Kaiden has pulled himself to standing twice - first time in his crib, where he managed to flip himself right out onto the floor! Second time, he did it at his leapfrog table. Still waiting for him to do it again, but he will. He's much better at taking steps (assisted) and now chews food like a pro. It is SO nice not to have to basically mince his food. Self feeding - not so much. The most he does is stick his hands in the food and squish it. My mom said I did that too! He will reach for the sippy cup and attempt to drink from it. I want to try out a straw cup with him, but I have to find one that's not so darn difficult to get the liquid out of. Playtex has been recommended, but it's locating one that's the problem. Amazon.com, here I come I guess!
He gets into EVERYTHING!!! I've had to baby-proof at a higher level in the house . . . I admit, I leave tempting items just out of his reach so he will work a little harder.
Kaiden is so vocal now, chatters all the time - I just wish they were real words . . . it's now been slightly over 1 year from the time he very clearly said "Mama" 3x to me . . . well, now he reaches for me so I'll take what I can get. LOL
The diaper venture is going pretty well, had 10 sales so far and more interested. Slow start, but that's how it goes with a new product. All the feedback I've gotten has been positive . . . I hope this takes off a bit, the extra income would be nice. Not to mention I love to sew! LOL I am working on animal themed diapers too, made a few and now people are requesting them - but I'm still working on the design. The animals are easy to add, but I've got to get the pattern set where I like it first.
Happy Holidays everyone!
Friday, December 24, 2010
Friday, November 5, 2010
it's been awhile!
Kaiden has now mastered sitting up, it's his new favorite activity and he keeps popping up like a little gopher! He gets into EVERYTHING now too!
I've been busy making diapers. I have a new one-size design that has been modified oh, 5 or 6 times, but I'm pretty happy with it, finally. I think there will be one more change, which won't affect function; it will just make it easier to sew shut once it's flipped right side out.
Went to the new JoAnn Fabric store in Austin - they closed the store here and opened a new one there - about 25 minutes away or so. Holy cow, the new store is HUGE and they have SO much new stuff!!! I got enough material to make 32 diapers . . . well not quite. I need to go back next week when they have their grand opening sale and use their coupon for the flannel that wasn't on sale today.
I'm getting my Etsy store up and running soon . . . watch out world, you've got some new diapers!!
I've been busy making diapers. I have a new one-size design that has been modified oh, 5 or 6 times, but I'm pretty happy with it, finally. I think there will be one more change, which won't affect function; it will just make it easier to sew shut once it's flipped right side out.
Went to the new JoAnn Fabric store in Austin - they closed the store here and opened a new one there - about 25 minutes away or so. Holy cow, the new store is HUGE and they have SO much new stuff!!! I got enough material to make 32 diapers . . . well not quite. I need to go back next week when they have their grand opening sale and use their coupon for the flannel that wasn't on sale today.
I'm getting my Etsy store up and running soon . . . watch out world, you've got some new diapers!!
Wednesday, October 20, 2010
some happy news!
Yesterday Kaiden sat up all by himself!! Of course, I missed it.
I changed his diaper, left him on his back on the floor and left the room to take care of the dirty diaper. Came back to see him sitting up, and not where I left him! He hasn't yet repeated the action, but if he did it once, I'm sure he can do it again!
These last few weeks Kaiden hasn't really done anything new; instead he's been refining his motor skills. PT has him cruising furniture and 4 point creeping (assisted). He can now go from a sitting position forward into a 4 point position, then does a belly flop - which is much better than him letting himself fall over onto his side, then twisting to get onto his belly.
He had stopped with the self feeding and is now back to grabbing the spoon if he feels I'm not feeding him fast enough! I should just let him have the spoon and the bowl and walk away and see what he does . . . but I think Lola will end up with his food if I do that!
With motivation (my fork???) he will inchworm thru the house - from the living room into the dining room and up over the threshold into the kitchen. I don't know why he likes forks so much . . . I don't let him play with it, I give him a spoon as reward instead! Safer for all involved!
He has tentatively started exploring. He normally sticks to inchworming around his play area and has now ventured into the dining room a few times; tonight he was fascinated by the wallpaper. Then played tug with Lola and one of her toys . . . too cute! Got that on video.
Not much else to report right now . . . I did read something regarding nightshades where nicotine works synergystically with solanine to do something . . . nicotine is in nightshades (as is solanine). As previously mentioned, solanine is in blueberries, but I'm pretty sure nicotine isn't. Have to dig further into that.
I changed his diaper, left him on his back on the floor and left the room to take care of the dirty diaper. Came back to see him sitting up, and not where I left him! He hasn't yet repeated the action, but if he did it once, I'm sure he can do it again!
These last few weeks Kaiden hasn't really done anything new; instead he's been refining his motor skills. PT has him cruising furniture and 4 point creeping (assisted). He can now go from a sitting position forward into a 4 point position, then does a belly flop - which is much better than him letting himself fall over onto his side, then twisting to get onto his belly.
He had stopped with the self feeding and is now back to grabbing the spoon if he feels I'm not feeding him fast enough! I should just let him have the spoon and the bowl and walk away and see what he does . . . but I think Lola will end up with his food if I do that!
With motivation (my fork???) he will inchworm thru the house - from the living room into the dining room and up over the threshold into the kitchen. I don't know why he likes forks so much . . . I don't let him play with it, I give him a spoon as reward instead! Safer for all involved!
He has tentatively started exploring. He normally sticks to inchworming around his play area and has now ventured into the dining room a few times; tonight he was fascinated by the wallpaper. Then played tug with Lola and one of her toys . . . too cute! Got that on video.
Not much else to report right now . . . I did read something regarding nightshades where nicotine works synergystically with solanine to do something . . . nicotine is in nightshades (as is solanine). As previously mentioned, solanine is in blueberries, but I'm pretty sure nicotine isn't. Have to dig further into that.
Thursday, October 14, 2010
I don't get it.
from: http://www.craigsams.com/pages/tobac.html:
WHAT ARE ACETYLCHOLINESTERASE INHIBITORS?
• The chemical that transmits nerve impulses from one nerve ending to the next is acetylcholine - once it has transmitted a nerve impulse it has done its job and is no longer needed so it is broken down by an enzyme called acetylcholinesterase and recycled.
• Solanine (or tomatine from tomatoes) slows the production of this acetylcholinesterase, so acetylcholine isn't broken down as fast as it's being produced.
• Acetylcholine builds up causing a 'traffic jam' of stimulation at the receptor nerve endings.
• The nerve endings become overstimulated
• This overstimulation can lead to muscle weakness, muscle twitching, hypertension, increased intestinal contractions and increased secretions of tear, sweat, saliva, gastric and intestinal glands.
• All nightshade foods contain solanine, a strong acetylcholinesterase inhibitor.
~~~~~~~~~~~~~
Yet, studies done regarding dementia are using acetylcholinesterase inhibitors because with dementia (and Down Syndrome) there isn't enough acetylcholine in the brain.
So does Kaiden have an adequate supply of acetylcholine, and the nightshades were inhibiting acetylcholinesterase, thereby causing a buildup of acetylcholine in his brain? Or did he not have enough acetylcholine . . . which doesn't really make sense because then you would think a bigger supply of acetylcholinesterase inhibitors would help - as with the dementia studies. Yet we all know what happens: Kaiden + nightshades = seizures and impaired cognitive function. Not that he isn't still delayed developmentally . . . but the astounding progress he has made since being nightshade free would make one think that he didn't have enough acetylcholinesterase, and too much choline. But when I began giving him choline supplements, he didn't get worse, he developed further.
There is so much to this, I wonder if I'll ever figure this whole thing out.
WHAT ARE ACETYLCHOLINESTERASE INHIBITORS?
• The chemical that transmits nerve impulses from one nerve ending to the next is acetylcholine - once it has transmitted a nerve impulse it has done its job and is no longer needed so it is broken down by an enzyme called acetylcholinesterase and recycled.
• Solanine (or tomatine from tomatoes) slows the production of this acetylcholinesterase, so acetylcholine isn't broken down as fast as it's being produced.
• Acetylcholine builds up causing a 'traffic jam' of stimulation at the receptor nerve endings.
• The nerve endings become overstimulated
• This overstimulation can lead to muscle weakness, muscle twitching, hypertension, increased intestinal contractions and increased secretions of tear, sweat, saliva, gastric and intestinal glands.
• All nightshade foods contain solanine, a strong acetylcholinesterase inhibitor.
~~~~~~~~~~~~~
Yet, studies done regarding dementia are using acetylcholinesterase inhibitors because with dementia (and Down Syndrome) there isn't enough acetylcholine in the brain.
So does Kaiden have an adequate supply of acetylcholine, and the nightshades were inhibiting acetylcholinesterase, thereby causing a buildup of acetylcholine in his brain? Or did he not have enough acetylcholine . . . which doesn't really make sense because then you would think a bigger supply of acetylcholinesterase inhibitors would help - as with the dementia studies. Yet we all know what happens: Kaiden + nightshades = seizures and impaired cognitive function. Not that he isn't still delayed developmentally . . . but the astounding progress he has made since being nightshade free would make one think that he didn't have enough acetylcholinesterase, and too much choline. But when I began giving him choline supplements, he didn't get worse, he developed further.
There is so much to this, I wonder if I'll ever figure this whole thing out.
Thursday, September 30, 2010
more nightshade ramblings
I'm rambling because I need a place to put down my thoughts so I can come back to them later when I try to think back and remember what I've all come across!
From: http://www.suite101.com/content/nightshades-a59252
Both cayenne and wolfberries, however, are the exception to the nightshade rule: Neither has significant toxicity and despite warnings about other nightshades, both wolfberries and cayenne pepper are universally recommended for health.
Interestingly, cayenne pepper doesn't affect Kaiden - it's in his vitamins. I thought when we first started to eliminate nightshades I might have to find different vitamins for him. And solanine is in blueberries - and they are one of Kaiden's favorite fruits - and they don't affect Kaiden either - at least not seizure-wise. Now, wolfberries (aka goji berries) DID cause an increase in Kaiden's seizure activity . . . at the time I had no idea they were part of the nightshade family - but then again, at that time I didn't realize nightshades were causing his seizures.
Cayenne has mixed results regarding arthritis. Some swear by it and become pain-free, and others, it only makes their arthritis worse.
I wish I knew exactly what was in each member of the nightshade family . . . they each contain the alkaloids of which there are several different ones, what other foods contain those alkaloids - but what else those foods contain that the alkaloids don't cause problems for certain conditions yet do for others. Of course, I still have yet to look up to see what the difference between an alkaloid and a glycoalkaloid is, same as with choline and acteylcholine.
I could stay up all night researching . . . but for right now I'd rather play with my special little boy.
From: http://www.suite101.com/content/nightshades-a59252
Both cayenne and wolfberries, however, are the exception to the nightshade rule: Neither has significant toxicity and despite warnings about other nightshades, both wolfberries and cayenne pepper are universally recommended for health.
Interestingly, cayenne pepper doesn't affect Kaiden - it's in his vitamins. I thought when we first started to eliminate nightshades I might have to find different vitamins for him. And solanine is in blueberries - and they are one of Kaiden's favorite fruits - and they don't affect Kaiden either - at least not seizure-wise. Now, wolfberries (aka goji berries) DID cause an increase in Kaiden's seizure activity . . . at the time I had no idea they were part of the nightshade family - but then again, at that time I didn't realize nightshades were causing his seizures.
Cayenne has mixed results regarding arthritis. Some swear by it and become pain-free, and others, it only makes their arthritis worse.
I wish I knew exactly what was in each member of the nightshade family . . . they each contain the alkaloids of which there are several different ones, what other foods contain those alkaloids - but what else those foods contain that the alkaloids don't cause problems for certain conditions yet do for others. Of course, I still have yet to look up to see what the difference between an alkaloid and a glycoalkaloid is, same as with choline and acteylcholine.
I could stay up all night researching . . . but for right now I'd rather play with my special little boy.
Monday, September 27, 2010
Mother Nature can't make it simple . . .
Right, so we now have this connection between nightshade foods and Down Syndrome (at least in my opinion anyway). However, Mother Nature doesn't make it that simple.
Take blueberries, for instance. They are touted as a brain food; studies showing that they help improve learning and memory loss, and are sold in supplement form targeting alzheimer's. What you may not know is that blueberries also contain solanine, one of the glycoalkaloids found in nightshade foods. Now if solanine is part of what is so detrimental . . . how can blueberries do so much good for the brain?
More research in my future! I should have a degree in biochemistry by the time I'm done.
Take blueberries, for instance. They are touted as a brain food; studies showing that they help improve learning and memory loss, and are sold in supplement form targeting alzheimer's. What you may not know is that blueberries also contain solanine, one of the glycoalkaloids found in nightshade foods. Now if solanine is part of what is so detrimental . . . how can blueberries do so much good for the brain?
More research in my future! I should have a degree in biochemistry by the time I'm done.
Friday, September 24, 2010
Nightshades and Down Syndrome. Dammit, I KNEW IT!!!
This is really pissing me off, seriously. If I can find this connection . . . why the F can't the western medical community find it??? And do they listen to me when I try to tell them?? Noooooo . . . I don't have a medical degree, let alone a degree past an AA from a community college. That doesn't mean I'm not smart or thorough, just that I personally found college to be a waste of my time and money. But that's a different subject . . .
I found the connection today . . . it's out there . . . already known . . . just nobody's put the two together. I was doing some more reading about the Paleo Diet (which Kaiden is on) to get the specifics of why nightshades aren't part of the Paleo Diet. For one, they are considered a "New World food", meaning they were not available to our early ancestors, so therefore they were not eaten. Now this website: http://www.eczemacure.info/blog/2010/06/14/paleo-diet-potatoes-leaky-gut-and-other-autoimmune-disease/, talks about potatoes (a nightshade food) and how the alkaloids do damage:
"Potatoes contain two glycoalkaloid saponins: ?-chaconine and ?-solanine which may adversely affect intestinal permeability and aggravate inflammatory bowel disease11, 12. Even in normal healthy adults, a meal of mashed potatoes results in the rapid appearance of both ?-chaconine and ?-solanine in the bloodstream13. The toxicity of these two glycoalkaloids is dose dependent – meaning that the greater the concentration in the bloodstream, the greater is their toxic effect. At least 12 separate cases of human poisoning from potato consumption, involving nearly 2000 people and 30 fatalities have been recorded10. Potato saponins can be lethally toxic once in the bloodstream in sufficient concentrations because these glycoalkaloids inhibit a key enzyme (acetyl cholinesterase) required for the synthesis of acetylcholine, a neurotransmitter required for nerve impulse conduction10."
Got that last part? Let me copy/paste it again:
"Potato saponins can be lethally toxic once in the bloodstream in sufficient concentrations because these glycoalkaloids inhibit a key enzyme (acetyl cholinesterase) required for the synthesis of acetylcholine, a neurotransmitter required for nerve impulse conduction10."
Now let's move over to the subject of Down Syndrome . . .
From http://einstein-syndrome.com/biochemistry_101/cell_biology/, a very informative website regarding Down Syndrome:
"Acetylcholine has many functions in the body, including activation of muscle fiber, release of hormones, and learning/memory. The reason that acetylcholine is of interest to us is that there are fewer acetylcholine receptors in the brain in Down syndrome. It is thought that this contributes to some of the memory and learning problems seen in Down syndrome, because nerves are being stimulated less frequently. Finally, it may explain some of the endocrine (hormone) problems seen in Down syndrome, such as short stature, since release of Growth Hormone is affected by acetylcholine (essentially, the nerves are not talking to the portion of the brain that releases the hormone.) To counter this problem, supplementary choline and inositol is included in the TNI formula. These chemicals are used by the body to make acetylcholine."
not only that . . . but this!
From http://www.dukehealth.org/health_library/news/421:
"Duke University Medical Center researchers tried the Alzheimer's drug on individuals with Down Syndrome because they realized both disorders result, in part, from an insufficient supply of a brain neurotransmitter called acetylcholine."
If all this information is known and readily available . . . WHY am I the only person who seems to have made this connection???? OMFG is all I have to say . . . while beating my head against the wall.
SOMEBODY PLEASE READ THIS AND PASS IT ON!!!
I found the connection today . . . it's out there . . . already known . . . just nobody's put the two together. I was doing some more reading about the Paleo Diet (which Kaiden is on) to get the specifics of why nightshades aren't part of the Paleo Diet. For one, they are considered a "New World food", meaning they were not available to our early ancestors, so therefore they were not eaten. Now this website: http://www.eczemacure.info/blog/2010/06/14/paleo-diet-potatoes-leaky-gut-and-other-autoimmune-disease/, talks about potatoes (a nightshade food) and how the alkaloids do damage:
"Potatoes contain two glycoalkaloid saponins: ?-chaconine and ?-solanine which may adversely affect intestinal permeability and aggravate inflammatory bowel disease11, 12. Even in normal healthy adults, a meal of mashed potatoes results in the rapid appearance of both ?-chaconine and ?-solanine in the bloodstream13. The toxicity of these two glycoalkaloids is dose dependent – meaning that the greater the concentration in the bloodstream, the greater is their toxic effect. At least 12 separate cases of human poisoning from potato consumption, involving nearly 2000 people and 30 fatalities have been recorded10. Potato saponins can be lethally toxic once in the bloodstream in sufficient concentrations because these glycoalkaloids inhibit a key enzyme (acetyl cholinesterase) required for the synthesis of acetylcholine, a neurotransmitter required for nerve impulse conduction10."
Got that last part? Let me copy/paste it again:
"Potato saponins can be lethally toxic once in the bloodstream in sufficient concentrations because these glycoalkaloids inhibit a key enzyme (acetyl cholinesterase) required for the synthesis of acetylcholine, a neurotransmitter required for nerve impulse conduction10."
Now let's move over to the subject of Down Syndrome . . .
From http://einstein-syndrome.com/biochemistry_101/cell_biology/, a very informative website regarding Down Syndrome:
"Acetylcholine has many functions in the body, including activation of muscle fiber, release of hormones, and learning/memory. The reason that acetylcholine is of interest to us is that there are fewer acetylcholine receptors in the brain in Down syndrome. It is thought that this contributes to some of the memory and learning problems seen in Down syndrome, because nerves are being stimulated less frequently. Finally, it may explain some of the endocrine (hormone) problems seen in Down syndrome, such as short stature, since release of Growth Hormone is affected by acetylcholine (essentially, the nerves are not talking to the portion of the brain that releases the hormone.) To counter this problem, supplementary choline and inositol is included in the TNI formula. These chemicals are used by the body to make acetylcholine."
not only that . . . but this!
From http://www.dukehealth.org/health_library/news/421:
"Duke University Medical Center researchers tried the Alzheimer's drug on individuals with Down Syndrome because they realized both disorders result, in part, from an insufficient supply of a brain neurotransmitter called acetylcholine."
If all this information is known and readily available . . . WHY am I the only person who seems to have made this connection???? OMFG is all I have to say . . . while beating my head against the wall.
SOMEBODY PLEASE READ THIS AND PASS IT ON!!!
Monday, September 20, 2010
been a few days!
Let's see, since the last time I updated, we took another cabin vacation, where Kaiden learned how to push himself forward with his feet!
His cognitive skills with hearing are moving along nicely too. Kaiden looks at me when I say his name, and responds to a few phrases. "Give it to Mom", "Let's go eat", "Come to Mom", and of course the words he already recognizes - eat, drink, Lola. I used to supplement words with signs, and now the signs are just supplements to words. He will whip his little head around when he hears a noise, looking for the source. My favorite though, is that when I say "come to Mom" while he's laying on his belly on the floor playing with toys, he will push himself up, and work his way over towards me, staying pushed up, indicating that he understands I want to pick him up. I've been working with him in that I will not pick him up unless he pushes himself up first - or, if he's laying on his back or in a sitting position, he has to lift his arms up before I will pick him up. He's got it down now!
Onto the topic of food . . . with Nick's help, we did 95% of the final garden harvest yesterday. Everything got picked, cleaned, washed, and appropriately stored. There's still one producing zucchini plant, two producing crookneck squash plants and a few 2nd crop radishes out there but everything else has been cleared and the space tilled for next summer. The shallots went crazy this year after Nick transplanted them, so I gave away about half of them yesterday and planted some seed heads within the garden. The shallot patch currently resides next to the garage, and if the seed heads take off in the garden, I'll move the rest of the patch over. We had a volunteer raspberry bramble and grapevine show up this year and grow well, let's hope they stick around and start producing next year!
I tried a new recipe yesterday for a rutabaga/parsnip/maple syrup dish, modified from one I found on the internet. Modified of course to remove the nightshade components. It was very good, but next time I will change it further to suit my tastes with the addition of ingredients as well as slightly changing how it is cooked to get the desired texture. A very rustic dish that was delicious served with my special turkey, and spiced pears for dessert. Thanksgiving, anyone??
His cognitive skills with hearing are moving along nicely too. Kaiden looks at me when I say his name, and responds to a few phrases. "Give it to Mom", "Let's go eat", "Come to Mom", and of course the words he already recognizes - eat, drink, Lola. I used to supplement words with signs, and now the signs are just supplements to words. He will whip his little head around when he hears a noise, looking for the source. My favorite though, is that when I say "come to Mom" while he's laying on his belly on the floor playing with toys, he will push himself up, and work his way over towards me, staying pushed up, indicating that he understands I want to pick him up. I've been working with him in that I will not pick him up unless he pushes himself up first - or, if he's laying on his back or in a sitting position, he has to lift his arms up before I will pick him up. He's got it down now!
Onto the topic of food . . . with Nick's help, we did 95% of the final garden harvest yesterday. Everything got picked, cleaned, washed, and appropriately stored. There's still one producing zucchini plant, two producing crookneck squash plants and a few 2nd crop radishes out there but everything else has been cleared and the space tilled for next summer. The shallots went crazy this year after Nick transplanted them, so I gave away about half of them yesterday and planted some seed heads within the garden. The shallot patch currently resides next to the garage, and if the seed heads take off in the garden, I'll move the rest of the patch over. We had a volunteer raspberry bramble and grapevine show up this year and grow well, let's hope they stick around and start producing next year!
I tried a new recipe yesterday for a rutabaga/parsnip/maple syrup dish, modified from one I found on the internet. Modified of course to remove the nightshade components. It was very good, but next time I will change it further to suit my tastes with the addition of ingredients as well as slightly changing how it is cooked to get the desired texture. A very rustic dish that was delicious served with my special turkey, and spiced pears for dessert. Thanksgiving, anyone??
Tuesday, August 24, 2010
Ramblings for the day
The endocrinologist has determined that Kaiden's throid levels are completely normal for his age. YAY!! Not that I had any real doubt . . .
He has started to get into another 4-point position - this time with his feet, not his knees, with his little butt up in the air. He hasn't figured out how to move in that position yet though. It's so much fun to watch him inchworm himself to his toys - and under them. This morning we practiced putting wood blocks into a bucket.
Here's the continuation of the list of accomplishments - last posting was for 7/19.
7/22/10 can pick up wooden blocks and fling them
7/23/10 consistently grabs for sippy cup on table during mealtime when he wants a drink
Now grabs handfuls of food out of the bowl and waves them around.
7/25/10 Opens mouth now when grabbing handfuls of food, gets much closer to his mouth before dropping it.
7/27/10 loves to pick up and examine his books
8/3/10 can army crawl in a circle, pivoting on belly
Brings food right to mouth and tries to get it in mouth now
8/6/10 took several unassisted giant alternating steps forward while the PT held him upright.
Can now “inchworm” to get toys out of reach.
8/13/10 purposely putting objects inside something. In this case, his wooden blocks into the base of the excersaucer. Now can put them into a bucket.
8/20/10 straightens legs and puts butt in air while in rocking 4-point position.
8/23/10 flinging blocks ahead and inchworming after them
Exploring his environment, not just his toys & books
***********************
I must admit today that I am disappointed. I contacted a couple more places to talk about the benign myoclonic seizure/nightshade foods connection, and although I was delighted that one party responded and was interested, they didn't seem very interested. Basically a "we'll keep an eye out if ever somebody else mentions it too".
Well, that's kind of my whole point, isn't it?? To mention it to others to see if they will try it? If they don't know and nobody ever tells them, how can they try it? I feel like I could have stumbled on an amazing medical discovery here and the western medical world just.isn't.interested.
Should I be suprised about that? After all, this would be a monetary loss for the pharmaceutical industry. No anticonvulsant meds. And a loss for the doctors, because if this works, and their patients don't need meds therefore developing no side effects that need to be monitored, and well, then they lose a patient. Maybe this just seems too easy, too good to be true. I didn't go to medical school, therefore I should not ever have figured this out, right?
All right, enough of me complaining. On to cooking!
Tonight I made beef stroganoff - not in the traditional way, but definitely just as tasty (or in my opinion, better!) I substituted olive oil for butter, coconut milk for sour cream, skipped the paprika, and served it over shredded fried zucchini rather than rice or noodles. Oh soooo gooooood!!!!
He has started to get into another 4-point position - this time with his feet, not his knees, with his little butt up in the air. He hasn't figured out how to move in that position yet though. It's so much fun to watch him inchworm himself to his toys - and under them. This morning we practiced putting wood blocks into a bucket.
Here's the continuation of the list of accomplishments - last posting was for 7/19.
7/22/10 can pick up wooden blocks and fling them
7/23/10 consistently grabs for sippy cup on table during mealtime when he wants a drink
Now grabs handfuls of food out of the bowl and waves them around.
7/25/10 Opens mouth now when grabbing handfuls of food, gets much closer to his mouth before dropping it.
7/27/10 loves to pick up and examine his books
8/3/10 can army crawl in a circle, pivoting on belly
Brings food right to mouth and tries to get it in mouth now
8/6/10 took several unassisted giant alternating steps forward while the PT held him upright.
Can now “inchworm” to get toys out of reach.
8/13/10 purposely putting objects inside something. In this case, his wooden blocks into the base of the excersaucer. Now can put them into a bucket.
8/20/10 straightens legs and puts butt in air while in rocking 4-point position.
8/23/10 flinging blocks ahead and inchworming after them
Exploring his environment, not just his toys & books
***********************
I must admit today that I am disappointed. I contacted a couple more places to talk about the benign myoclonic seizure/nightshade foods connection, and although I was delighted that one party responded and was interested, they didn't seem very interested. Basically a "we'll keep an eye out if ever somebody else mentions it too".
Well, that's kind of my whole point, isn't it?? To mention it to others to see if they will try it? If they don't know and nobody ever tells them, how can they try it? I feel like I could have stumbled on an amazing medical discovery here and the western medical world just.isn't.interested.
Should I be suprised about that? After all, this would be a monetary loss for the pharmaceutical industry. No anticonvulsant meds. And a loss for the doctors, because if this works, and their patients don't need meds therefore developing no side effects that need to be monitored, and well, then they lose a patient. Maybe this just seems too easy, too good to be true. I didn't go to medical school, therefore I should not ever have figured this out, right?
All right, enough of me complaining. On to cooking!
Tonight I made beef stroganoff - not in the traditional way, but definitely just as tasty (or in my opinion, better!) I substituted olive oil for butter, coconut milk for sour cream, skipped the paprika, and served it over shredded fried zucchini rather than rice or noodles. Oh soooo gooooood!!!!
Friday, August 6, 2010
one giant step for mankind . . . or is that Kaiden?
Today Kaiden took several unassisted giant alternating steps forward while is physical therapist just held him upright. He decided to do the steps all on his own! It was pretty funny, he lifted his knees so high he looked like he was marching! All I could think of was Neil Armstrong, "that's one small step for man; one giant leap for mankind".
Yesterday Kaiden had his 18 month well visit. It went pretty well; it was very informative. His pediatrician was very impressed at his recent progress. She wanted to know if we had done a follow up with the neurologist yet. I said no, we never heard back from the guy after sending the letter. She still wants us to do a follow up. Nick and I don't see the point - we took Kaiden to the neurologist because he was having seizures. He hasn't had a seizure for more than 2 months since I figured out the whole nightshade thing; his cognitive progress is nothing short of absolutely amazing for an individual with Down Syndrome - why should we waste our time and money for an appointment so they can give us the official "all clear"? Just more money in their pocket, less in ours. She thinks we should consider the Mayo Clinic's neurology department . . . uh, no. I may call them with the nightshade connection information but as far as Nick & I are concerned, no member of this family will set foot in a Mayo establishment for treatment unless it is an absolutely life or death situation. And even in that event, if we are able to speak, we will request a transfer to Fairview. We have never had a good experience with Mayo doctors (they almost killed me twice, and I am not kidding about that) so they are not an option in our book.
Back to Kaiden's well visit: his pediatrician was also telling me how the nervous system forms from the head down to the toes. She was able to witness just how well Kaiden sits upright unassisted and said she could see that his nervous system has now reached his lower lumbar region and that his hips are next. Which will be nice, since that's the one area left that's keeping him from walking. The ligaments/tendons are just too flexible yet so he's still wobbly.
Kaiden has lost almost 3 lbs since his 15 month well visit, down to 19 lbs 11 oz from 22 lbs 7 oz. The pediatrician was concerned, but you have to understand Kaiden used to be pretty chubby and very inactive in comparision to a typical child of his age. Now that he is very active, he's slimmed down and looks like a normal-weight little boy. Taking our unique situation into consideration, the pediatrician is less concerned, but wants us to return in 3 months for a weight check just in case there's an underlying condition that is causing him to lose weight, rather than solely his newfound activity level. I had to laugh though, she asked me to walk her through a typical day's meals and I only got as far as breakfast before she decided I was feeding him good enough! She also asked about his diaper contents, I assume to rule out that I'm starving the poor child. He goes through 7 diapers a day. He also has nice normal solid poop, too, in case anybody was wondering!
I had them do a thyroid panel since he's supposed to have his thyroid tested yearly. Kaiden was put on Synthroid shortly after birth, but his endocrinologist said he thought the doctors tested his thyroid too early after birth and he probably never needed it. The level rises after birth, then comes back down and levels out and he thinks they tested it before it leveled out. The Synthroid made his thyroid go the opposite direction, so the endocrinologist took him off the meds and Kaiden's levels evened out by themselves and remained stable. He has been off Synthroid for over a year.
Although Kaiden displays absolutely zero signs or symptoms of a thyroid malfuction, the results came back as mostly normal, one level slightly elevated. This could be due to several things - the choice that seems obvious to the western medical community is the fact he has Down Syndrome, and it is very common in those with Down Syndrome for the thyroid not to function correctly. I doubt they will look past that unless I step in - which of course I will do! Among the things nightshade foods can do to a person, they can also cause a copper deficieny. I did find quite a few links with Google about people's thyroid malfunction in conjunction with eating nightshade foods. Kaiden has been off nightshades for just over 2 months, and it can take up to 6 months for the nightshade effects to completely leave the system. Will they bother testing his copper levels? I highly doubt it. I will take a stand though - if they want him back on thyroid meds, they are going to have to wait until Kaiden has been nightshade free for 6 full months, THEN they can retest his thyroid. And I'm willing to bet that his levels will be just fine.
The thyroid level could also be associated with his recent weight loss. I'm not concerned - Kaiden is one happy, healthy, very active little boy who continues to make cognitive strides. Am I supposed to put him on meds with side effects to dampen down his newfound activity level? Yeah, right, I don't think so!
Kaiden also had his annual eye exam - also warranted by the doctors because he has Down Syndrome. It tested as perfect last year, and remains perfect this year! I hope he inherited his father's vision and not mine!
More fun to report: Kaiden has now discovered Lola's toys. She was quite put out that Kaiden has taken her toys! She gave me the most pitiful look until Kaiden dropped her toy, and then she gently snuck it away from him.
And now to cooking . . . . The pediatrician thinks I need to fatten Kaiden back up a little, she actually said he's TOO healthy. She thinks his caloric intake isn't enough for his new activity level. It's not like I'm starving him - I have tried time and time again to offer him snacks between meals and he refuses them If the bowl is empty and he indicates he wants more, I make him more food and feed him until he refuses more.
I understand that fat is essential to brain development, but the kid's not gaunt. He's still chubby - just a normal-weight chubby, not rolls-of-fat chubby like he was. And with his cognitive progression, he's definitely doing fine! She asked how much fat I feed him, and I told her I don't cut the fat off his meats, and I save the extra meat drippings from the meats I cook and give it to him just so he gets all the nutrition I can possibly give him. I cook with olive and canola oil, and Kaiden gets lots of seeds & nuts. He also gets some avacado every day. I also told her what I've done for my milk supply to make my breastmilk thick and rich rather than thin and watery. She didn't have much more to suggest except to try to look for some olive butter but that I would probably have to order it from overseas. Then on the way home I thought . . . I have cocoa butter and coconut oil . . . I use them to make lotion but they are very edible and good for you . . . I can make my own chocolate! Yummy!!! Uh-oh, Kaiden could become a chocoholic like I am.
Now the funny part is that Kaiden must have heard and understood her say he should eat more. I tell him that all the time, that if he wants more I will happily give him more! But NOOOOO . . . apparently it takes someone else to tell him . . . because since the appointment his food intake has gone up quite a bit. What a funny kid!
Yesterday Kaiden had his 18 month well visit. It went pretty well; it was very informative. His pediatrician was very impressed at his recent progress. She wanted to know if we had done a follow up with the neurologist yet. I said no, we never heard back from the guy after sending the letter. She still wants us to do a follow up. Nick and I don't see the point - we took Kaiden to the neurologist because he was having seizures. He hasn't had a seizure for more than 2 months since I figured out the whole nightshade thing; his cognitive progress is nothing short of absolutely amazing for an individual with Down Syndrome - why should we waste our time and money for an appointment so they can give us the official "all clear"? Just more money in their pocket, less in ours. She thinks we should consider the Mayo Clinic's neurology department . . . uh, no. I may call them with the nightshade connection information but as far as Nick & I are concerned, no member of this family will set foot in a Mayo establishment for treatment unless it is an absolutely life or death situation. And even in that event, if we are able to speak, we will request a transfer to Fairview. We have never had a good experience with Mayo doctors (they almost killed me twice, and I am not kidding about that) so they are not an option in our book.
Back to Kaiden's well visit: his pediatrician was also telling me how the nervous system forms from the head down to the toes. She was able to witness just how well Kaiden sits upright unassisted and said she could see that his nervous system has now reached his lower lumbar region and that his hips are next. Which will be nice, since that's the one area left that's keeping him from walking. The ligaments/tendons are just too flexible yet so he's still wobbly.
Kaiden has lost almost 3 lbs since his 15 month well visit, down to 19 lbs 11 oz from 22 lbs 7 oz. The pediatrician was concerned, but you have to understand Kaiden used to be pretty chubby and very inactive in comparision to a typical child of his age. Now that he is very active, he's slimmed down and looks like a normal-weight little boy. Taking our unique situation into consideration, the pediatrician is less concerned, but wants us to return in 3 months for a weight check just in case there's an underlying condition that is causing him to lose weight, rather than solely his newfound activity level. I had to laugh though, she asked me to walk her through a typical day's meals and I only got as far as breakfast before she decided I was feeding him good enough! She also asked about his diaper contents, I assume to rule out that I'm starving the poor child. He goes through 7 diapers a day. He also has nice normal solid poop, too, in case anybody was wondering!
I had them do a thyroid panel since he's supposed to have his thyroid tested yearly. Kaiden was put on Synthroid shortly after birth, but his endocrinologist said he thought the doctors tested his thyroid too early after birth and he probably never needed it. The level rises after birth, then comes back down and levels out and he thinks they tested it before it leveled out. The Synthroid made his thyroid go the opposite direction, so the endocrinologist took him off the meds and Kaiden's levels evened out by themselves and remained stable. He has been off Synthroid for over a year.
Although Kaiden displays absolutely zero signs or symptoms of a thyroid malfuction, the results came back as mostly normal, one level slightly elevated. This could be due to several things - the choice that seems obvious to the western medical community is the fact he has Down Syndrome, and it is very common in those with Down Syndrome for the thyroid not to function correctly. I doubt they will look past that unless I step in - which of course I will do! Among the things nightshade foods can do to a person, they can also cause a copper deficieny. I did find quite a few links with Google about people's thyroid malfunction in conjunction with eating nightshade foods. Kaiden has been off nightshades for just over 2 months, and it can take up to 6 months for the nightshade effects to completely leave the system. Will they bother testing his copper levels? I highly doubt it. I will take a stand though - if they want him back on thyroid meds, they are going to have to wait until Kaiden has been nightshade free for 6 full months, THEN they can retest his thyroid. And I'm willing to bet that his levels will be just fine.
The thyroid level could also be associated with his recent weight loss. I'm not concerned - Kaiden is one happy, healthy, very active little boy who continues to make cognitive strides. Am I supposed to put him on meds with side effects to dampen down his newfound activity level? Yeah, right, I don't think so!
Kaiden also had his annual eye exam - also warranted by the doctors because he has Down Syndrome. It tested as perfect last year, and remains perfect this year! I hope he inherited his father's vision and not mine!
More fun to report: Kaiden has now discovered Lola's toys. She was quite put out that Kaiden has taken her toys! She gave me the most pitiful look until Kaiden dropped her toy, and then she gently snuck it away from him.
And now to cooking . . . . The pediatrician thinks I need to fatten Kaiden back up a little, she actually said he's TOO healthy. She thinks his caloric intake isn't enough for his new activity level. It's not like I'm starving him - I have tried time and time again to offer him snacks between meals and he refuses them If the bowl is empty and he indicates he wants more, I make him more food and feed him until he refuses more.
I understand that fat is essential to brain development, but the kid's not gaunt. He's still chubby - just a normal-weight chubby, not rolls-of-fat chubby like he was. And with his cognitive progression, he's definitely doing fine! She asked how much fat I feed him, and I told her I don't cut the fat off his meats, and I save the extra meat drippings from the meats I cook and give it to him just so he gets all the nutrition I can possibly give him. I cook with olive and canola oil, and Kaiden gets lots of seeds & nuts. He also gets some avacado every day. I also told her what I've done for my milk supply to make my breastmilk thick and rich rather than thin and watery. She didn't have much more to suggest except to try to look for some olive butter but that I would probably have to order it from overseas. Then on the way home I thought . . . I have cocoa butter and coconut oil . . . I use them to make lotion but they are very edible and good for you . . . I can make my own chocolate! Yummy!!! Uh-oh, Kaiden could become a chocoholic like I am.
Now the funny part is that Kaiden must have heard and understood her say he should eat more. I tell him that all the time, that if he wants more I will happily give him more! But NOOOOO . . . apparently it takes someone else to tell him . . . because since the appointment his food intake has gone up quite a bit. What a funny kid!
Thursday, July 29, 2010
the interesting thing about grains . . .
Refined grains make you gassy. At least in my experience anyway! In the typical American diet, we consume so much refined grain - and when we eat raw fresh veggies - which, let's face it, most do not eat . . . most people eat some cooked to death version of vegetables . . . we all think fresh raw veggies give us gas. Oh, sure, we can purchase some gas-reducing product and hope it works . . . but most would just avoid the fresh raw veggies.
Well, in switching to a grain-free diet, I eat all the fresh raw vegetables I want. And I'm not gassy! I sure used to be though, with the old way of eating. And I found that when I caved and ate something with refined grains, that same gastrointestinal distress - bloating and gas, came right back. Since this happened each time I caved and consumed refined grains, and went away each time I gave them up, the only conclusion I can come to is that it is the GRAIN, not the fresh raw vegetables, that causes the gastrointestinal distress.
Let me be clear, this is moreso the case with the beat-to-death refined grains rather than whole grains.
And it makes sense . . . those beat-to-death refined grains slow down digestion, leaving your food to sit there and ferment in your gut (gas, bloating). If you stop consuming grain, nothing slows down your digestion and the food can move along at the rate it's supposed to.
The true whole grains will still slow down digestion, but not as bad as refined grains. I'm pretty careful now, and really avoid grains - whole or refined. And I no longer miss them.
Well, in switching to a grain-free diet, I eat all the fresh raw vegetables I want. And I'm not gassy! I sure used to be though, with the old way of eating. And I found that when I caved and ate something with refined grains, that same gastrointestinal distress - bloating and gas, came right back. Since this happened each time I caved and consumed refined grains, and went away each time I gave them up, the only conclusion I can come to is that it is the GRAIN, not the fresh raw vegetables, that causes the gastrointestinal distress.
Let me be clear, this is moreso the case with the beat-to-death refined grains rather than whole grains.
And it makes sense . . . those beat-to-death refined grains slow down digestion, leaving your food to sit there and ferment in your gut (gas, bloating). If you stop consuming grain, nothing slows down your digestion and the food can move along at the rate it's supposed to.
The true whole grains will still slow down digestion, but not as bad as refined grains. I'm pretty careful now, and really avoid grains - whole or refined. And I no longer miss them.
Sunday, July 25, 2010
I forgot to mention . . .
**UPDATE to this post - the vitamins' ingredient list now no longer contains cayenne**
Kaiden is 99.999999% nightshade free, not truly 100%. His vitamins, Dr. Christopher's Kid-E-Mins, contains cayenne extract. Maybe the extract doesn't contain the alkaloids, or maybe it's at a low enough dosage, or maybe cayenne peppers just don't bother him. Not all members of nightshade foods affect people the same way. Some may only be affected by one or two members, while others have problems with most or all of them.
I had rarely used cayenne pepper in cooking, and probably not at all since Kaiden was born. I was primarily using chili peppers, chili powder, Mexican chili powder, paprika, tomatoes and frozen bell peppers on a regular basis. I know that fresh bell peppers, eggplant, and paprika did a number on him, and I suspect chili peppers/powders did too - but I used them primarily in dishes that had tomatoes in them - so which was it - or was it all of it?
I don't even give Kaiden the full dosage of his vitamins - only 1/3 the recommended dosage - so the amount of cayenne extract he's getting is extremely tiny. Still, I worry, even though he's been seizure free for almost 2 months now.
I'm still debating the whole vaccination issue as well. I know we can fill out forms with the school district and Kaiden doesn't have to be vaccinated. Nick would like him vaccinated; I'm on the fence. At any rate, I want him seizure free for a full year before we revisit the issue. If we choose to proceed, I do have some bentonite clay, and he will have clay baths following any vaccinations to remove the toxins from his system. And he will only get 1 vaccine at a time. He'll be far behind, but hey, it's my choice, not society's. And I think I've already proven I have some idea of what I'm doing! ;-)
Kaiden is 99.999999% nightshade free, not truly 100%. His vitamins, Dr. Christopher's Kid-E-Mins, contains cayenne extract. Maybe the extract doesn't contain the alkaloids, or maybe it's at a low enough dosage, or maybe cayenne peppers just don't bother him. Not all members of nightshade foods affect people the same way. Some may only be affected by one or two members, while others have problems with most or all of them.
I had rarely used cayenne pepper in cooking, and probably not at all since Kaiden was born. I was primarily using chili peppers, chili powder, Mexican chili powder, paprika, tomatoes and frozen bell peppers on a regular basis. I know that fresh bell peppers, eggplant, and paprika did a number on him, and I suspect chili peppers/powders did too - but I used them primarily in dishes that had tomatoes in them - so which was it - or was it all of it?
I don't even give Kaiden the full dosage of his vitamins - only 1/3 the recommended dosage - so the amount of cayenne extract he's getting is extremely tiny. Still, I worry, even though he's been seizure free for almost 2 months now.
I'm still debating the whole vaccination issue as well. I know we can fill out forms with the school district and Kaiden doesn't have to be vaccinated. Nick would like him vaccinated; I'm on the fence. At any rate, I want him seizure free for a full year before we revisit the issue. If we choose to proceed, I do have some bentonite clay, and he will have clay baths following any vaccinations to remove the toxins from his system. And he will only get 1 vaccine at a time. He'll be far behind, but hey, it's my choice, not society's. And I think I've already proven I have some idea of what I'm doing! ;-)
Saturday, July 24, 2010
Life is about to get very messy!
Kaiden has discovered he can pick up big fistfuls of food. Oh YAY!! Most of me is thrilled that he is on his way to self-feeding . . . but the other tiny part of me will miss the somewhat less messy option of me spoon feeding him instead. I may have to temporarily move some of his feedings into the kitchen rather than the dining room - much easier to clean up after him. I'd like to keep him at the dining room table so he can watch us eat, maybe I'll just have to get a floor mat to go over the big rug under the table.
He hasn't caught on yet that the handful of food should go into his mouth, but he'll get there. I've been re-directing his hand, but right now he drops the food just before it gets to his mouth. I swear he will learn to eat with a spoon before he learns to eat with his hands! Not that that's a bad thing . . . He is also consistently reaching for the sippy cup when he wants a drink and doing much better at holding it up to his mouth while drinking rather than trying to drink but pulling it away at the same time, like his hands just didn't know what they were doing yet.
Oh my . . . what a time-saver self feeding will be when he masters it! I can pump while he eats instead afterward.
He has also discovered wooden blocks and is enamored with them. He picks them up, rolls them around, and flings them.
Kaiden is not crawling yet. He is still going crazy rocking on all 4's . . . now more so up on hands and knees rather than elbows and knees so it shouldn't be too much longer. He's getting much better at scooting backward and can go forward a little.
All this, in less than 2 months of being seizure free . . . while I am thrilled the University of MN was so interested in Kaiden's story, I wonder how far it will go there - if they will actually share the info with their colleagues, or even with their patients - or if it will just get scoffed at and disregarded. I am thinking I need to make a list of all the states & their universities, and start making more phone calls. Somebody with authority needs to do a study with variables. We've done so much with Kaiden's diet but who knows how much of a role being grain free, dairy free, and having Down Syndrome plays into the whole nightshade foods-seizure connection.
He hasn't caught on yet that the handful of food should go into his mouth, but he'll get there. I've been re-directing his hand, but right now he drops the food just before it gets to his mouth. I swear he will learn to eat with a spoon before he learns to eat with his hands! Not that that's a bad thing . . . He is also consistently reaching for the sippy cup when he wants a drink and doing much better at holding it up to his mouth while drinking rather than trying to drink but pulling it away at the same time, like his hands just didn't know what they were doing yet.
Oh my . . . what a time-saver self feeding will be when he masters it! I can pump while he eats instead afterward.
He has also discovered wooden blocks and is enamored with them. He picks them up, rolls them around, and flings them.
Kaiden is not crawling yet. He is still going crazy rocking on all 4's . . . now more so up on hands and knees rather than elbows and knees so it shouldn't be too much longer. He's getting much better at scooting backward and can go forward a little.
All this, in less than 2 months of being seizure free . . . while I am thrilled the University of MN was so interested in Kaiden's story, I wonder how far it will go there - if they will actually share the info with their colleagues, or even with their patients - or if it will just get scoffed at and disregarded. I am thinking I need to make a list of all the states & their universities, and start making more phone calls. Somebody with authority needs to do a study with variables. We've done so much with Kaiden's diet but who knows how much of a role being grain free, dairy free, and having Down Syndrome plays into the whole nightshade foods-seizure connection.
Friday, July 23, 2010
A word about radishes . . .
In one word, yum!!
I planted some Purple Plum radishes this year along with some Cherry Belle's. While the Cherry Belle's produced as expected, the Purple Plum's did not. It took longer for the root bulb to form, and in most cases, didn't form at all. What they did, however, was go to seed quickly and produced many seed pods.
Did you know the entire radish plant is edible? Most people just eat the bulbous root and throw the rest away. Don't do that . . . you're wasting an excellent meal! The roots can be sliced and sauteed. Sautee with some onion & asparagus, add in the chopped radish leaves and stir over low heat until just wilted. Add salt & pepper and serve!
Back to the Purple Plums . . . I tried eating a seed pod and was very pleasantly suprised - they are incredibly tasty! They taste just like the root, except they are juicier - somewhat like a nice crisp juicy string bean - except it tastes like radish. The flowers are edible too. They give just a hint of a radish flavor, and would make a lovely (and beautiful) addition to any salad.
So the next time your garden gets out of hand and you think the radishes are beyond eating . . . they're not. They're even tastier! Even Lola liked them. ;-)
I planted some Purple Plum radishes this year along with some Cherry Belle's. While the Cherry Belle's produced as expected, the Purple Plum's did not. It took longer for the root bulb to form, and in most cases, didn't form at all. What they did, however, was go to seed quickly and produced many seed pods.
Did you know the entire radish plant is edible? Most people just eat the bulbous root and throw the rest away. Don't do that . . . you're wasting an excellent meal! The roots can be sliced and sauteed. Sautee with some onion & asparagus, add in the chopped radish leaves and stir over low heat until just wilted. Add salt & pepper and serve!
Back to the Purple Plums . . . I tried eating a seed pod and was very pleasantly suprised - they are incredibly tasty! They taste just like the root, except they are juicier - somewhat like a nice crisp juicy string bean - except it tastes like radish. The flowers are edible too. They give just a hint of a radish flavor, and would make a lovely (and beautiful) addition to any salad.
So the next time your garden gets out of hand and you think the radishes are beyond eating . . . they're not. They're even tastier! Even Lola liked them. ;-)
Tuesday, July 20, 2010
Latest updates to Kaiden's accomplishements
Even better news for the day . . . this morning I got a call back from the University of MN's Neurology dept - they wanted to hear Kaiden's story and asked for this blog address!! I am really excited that somebody in the medical community finally listened, and maybe, just mabye this will go somewhere and can help others - either with benign myoclonic seizures, Down Syndrome, or both!
The last date posted for Kaiden's accomplishments was June 25th. Here's the most recently updated additions to the list!!
6/29/10
Deliberately and clearly signed eat when it was not mealtime. – around 9:45pm. I offered him water because of the time frame and he drank it all. Afterward he signed eat again and took more water.
(Vacation 7/2 – 7/11, not exactly sure of dates of accomplishments while on vacation)
7/3/10
Sits up unassisted on the floor for long periods of time, 45 min or so with no help balancing.
7/5/10
Tries to get our plates/cups while we are eating
Reaches for toys while supposed to be eating
7/9/10
Scooting backward
Signs eat when we are eating and he is not.
Bites down on spoon during feedings and won’t let go.
7/13/10
Stood up straight, at full extension in his walker and lifted his arms all the way up reaching for me to pick him up.
7/14/10
Reaches for everything now!
Weight bearing with arms straight, hands on thighs while in sitting position, rocking back and forth at the same time.
Grabbing bowl of food and trying to fling it off highchair
7/15/10
Purposeful toy play, figured out how to use a lever to get a toy to spin.
7/19/10
Stood for about 20 seconds on his own, and reached for Nick while falling.
Took a couple steps holding onto Nick
Now able to stand and support himself against his Leapfrog table while playing with it.
The last date posted for Kaiden's accomplishments was June 25th. Here's the most recently updated additions to the list!!
6/29/10
Deliberately and clearly signed eat when it was not mealtime. – around 9:45pm. I offered him water because of the time frame and he drank it all. Afterward he signed eat again and took more water.
(Vacation 7/2 – 7/11, not exactly sure of dates of accomplishments while on vacation)
7/3/10
Sits up unassisted on the floor for long periods of time, 45 min or so with no help balancing.
7/5/10
Tries to get our plates/cups while we are eating
Reaches for toys while supposed to be eating
7/9/10
Scooting backward
Signs eat when we are eating and he is not.
Bites down on spoon during feedings and won’t let go.
7/13/10
Stood up straight, at full extension in his walker and lifted his arms all the way up reaching for me to pick him up.
7/14/10
Reaches for everything now!
Weight bearing with arms straight, hands on thighs while in sitting position, rocking back and forth at the same time.
Grabbing bowl of food and trying to fling it off highchair
7/15/10
Purposeful toy play, figured out how to use a lever to get a toy to spin.
7/19/10
Stood for about 20 seconds on his own, and reached for Nick while falling.
Took a couple steps holding onto Nick
Now able to stand and support himself against his Leapfrog table while playing with it.
Monday, July 19, 2010
back from vacation!
Okay so we got back a week ago! We had a wonderful time, fishing was great except for having to throw back all those oversize walleyes, darn it! Nick brought home a trophy 36" 13lb northern pike which will be very tasty when shared with family & friends. Overall, we brought home 7 northerns & 3 walleye, 2 of which we shared with the neighbors for looking after our place while we were gone.
Kaiden continues to make strides, he can now sit up all by himself for long periods of time playing with toys. He does bang his head on the floor a bit, which I have been told is just a sensory learning thing (now that he can really feel stuff!) and he will outgrow it in time. At least the carpet is padded!
The little stinker is now grabbing the food bowl away from me as I feed him and tries to fling it onto the floor . . . uh-uh, not gonna happen little guy. Mama went out to Walmart and got a bowl with a suction cup bottom today. Try it now, HA! I really need to set him up in the kitchen with food in the bowl and let him have at it. Pudding play, it's called - or in our case with Kaiden's diet, applesauce play. I may need the garden hose when he's done . . .
Kaiden is firmly in the 12 - 15 month developmental range now - still closer to 12 month but making strides every day! I still have not heard one word back from his neurologist. I think he's a lost cause. So, today I contacted a different neurologist with the University of Minnesota- or rather, his nurse, and left a message. I hope I hear back. Also, in reading the local paper today, there was an article on a local family with a child with epilepsy and so I gave them a call. It was great to connect with another family, and I really hope they try eliminating nightshade foods . . . it certainly can't hurt!
I realize it's up to me to get the word out . . . difficult when the local media says "we are not interested at this time" and the doctors don't respond. I guess that's what Facebook, blogs, and message forums are for! Every now and then I try looking up "nightshade" and "benign myoclonic seizures" in Google and the only things that come up are the things I've personally posted. Maybe if I post enough somebody else will see it. I just have to be persistant. If anyone has any suggestions, I'd love to hear them!
Kaiden continues to make strides, he can now sit up all by himself for long periods of time playing with toys. He does bang his head on the floor a bit, which I have been told is just a sensory learning thing (now that he can really feel stuff!) and he will outgrow it in time. At least the carpet is padded!
The little stinker is now grabbing the food bowl away from me as I feed him and tries to fling it onto the floor . . . uh-uh, not gonna happen little guy. Mama went out to Walmart and got a bowl with a suction cup bottom today. Try it now, HA! I really need to set him up in the kitchen with food in the bowl and let him have at it. Pudding play, it's called - or in our case with Kaiden's diet, applesauce play. I may need the garden hose when he's done . . .
Kaiden is firmly in the 12 - 15 month developmental range now - still closer to 12 month but making strides every day! I still have not heard one word back from his neurologist. I think he's a lost cause. So, today I contacted a different neurologist with the University of Minnesota- or rather, his nurse, and left a message. I hope I hear back. Also, in reading the local paper today, there was an article on a local family with a child with epilepsy and so I gave them a call. It was great to connect with another family, and I really hope they try eliminating nightshade foods . . . it certainly can't hurt!
I realize it's up to me to get the word out . . . difficult when the local media says "we are not interested at this time" and the doctors don't respond. I guess that's what Facebook, blogs, and message forums are for! Every now and then I try looking up "nightshade" and "benign myoclonic seizures" in Google and the only things that come up are the things I've personally posted. Maybe if I post enough somebody else will see it. I just have to be persistant. If anyone has any suggestions, I'd love to hear them!
Thursday, July 1, 2010
July already?
How did that happen? Time sure flies. Kaiden is really rocking away up on all 4's now. We're thinking he might actually start crawling within the next week or two!
We're off for a bit on vacation, leaving tomorrow morning and back on the 11th. Happy 4th!!
We're off for a bit on vacation, leaving tomorrow morning and back on the 11th. Happy 4th!!
Wednesday, June 30, 2010
6/30/2010
Just a quickie for now . . . last night Kaiden very clearly signed "eat" looking directly at me. Too bad for him, it was almost 10pm so he only got a sippy of water since I was trying to get him to go to sleep. Not only did he down that, he signed "eat" again and took a little more before finally retiring for the night. I am so proud of him for clearly communicating his needs!!
Just a few minutes ago Nick informed me that Kaiden managed to go forward a little bit while up on all fours . . . only time will tell what the rest of the evening will bring!
Just a few minutes ago Nick informed me that Kaiden managed to go forward a little bit while up on all fours . . . only time will tell what the rest of the evening will bring!
Tuesday, June 29, 2010
Why Kaiden is one special kid
This part is the history behind Kaiden's conception, aka our TTC journey. If you're squeamish, turn away now! Don't worry, it's not pornographic but it is a bit graphic.
I'll start this out with what we went through, and end it with my beliefs because of what happened.
We first started not trying, not preventing in Dec of '04. No pregnancies . . . we thought that the stress from my job (not my job per say, but the people I worked for) was part of the reason I wasn't getting pregnant. Since we planned for me to be a stay-at-home mom anyway, Nick highly encouraged me to quit my job and just stay home. After much consideration (and many frustrating events at work) I finally agreed and left in Feb '06.
A short four months later, we had our first pregnancy. Within a week of finding out, I knew something was wrong. I had excruciating pain in my left side and spotting. I went to the local clinic several times, and each time they sent me away saying I was "just having a miscarriage" and to go home and wait it out. I read about other women's experiences of miscarriage and it didn't fit at all. I felt strongly that I had an ectopic pregnancy with internal bleeding. After 3 weeks of trying to convince the doctors, they finally agreed that it was ectopic, and I was bleeding internally. And they still sent me home, and told me to set up my surgery for the next day with Outpatient Surgery. That was a disaster. Nobody knew what procedures were scheduled, who was doing the surgery, or what was going on. During the surgery, the nurses reported to Nick a bunch of conflicting information. They were taking the ovary, they weren't taking the ovary, or was it the tube?? After the surgery, the doctor came out to Nick and said, (and I quote) "she only needs one" and left. One what? One ovary, one tube, what?? Nobody would answer my questions after the surgery and the doctor claimed he never received my (several) messages. I had to watch my surgery video and compare it to others online to figure out what happened in there. At the post-op appointment, the doctor dropped another bombshell: It was twins. One in the left tube, half of which they removed, and the other was in the uterus, very deteriorated (this is called a heterotopic pregnancy). So deteriorated that it didn't test positive as a "product of conception". He also said that he didn't have to remove my left tube, but did it anyway because I still had my right tube and that one was fine.
After this, we began actively trying to conceive and 5 months after the surgery, I was pregnant again. And one week later, the spotting began and I miscarried and thought it was over. Turns out it wasn't. I was suprised to find out at my follow up doctor appointment (I went to a different clinic this time) that I was still indeed pregnant. The doctor felt it was another ectopic, but refused to do an ultrasound to confirm and encouraged me to terminate. Without confirmation, I refused to terminate the pregnancy. What if they were wrong? Turns out I was wrong and they were right, it was another ectopic and this time I lost the entirety of my right tube. Since I had also miscarried, it meant this was another heterotopic pregnancy. One is rare, but two back to back is extremely rare.
We moved on to IVF (invitro fertilization) and I became pregnant for the 3rd time at the end of 2007 with the transfer of 2 fresh embryos. I gave the local clinic another chance. Given my history, I asked they be extremely thorough and careful in the event of another ectopic or heterotopic pregnancy. Even with IVF, the risk exists. Instead, they assured me that would never happen and only did a quick sweep for the first fetal ultrasound. The nurse practitioner (who "specializes in ultrasounds") saw one sac in the uterus that was behind in development. Looking back, I know I ruptured the very next day. Because they only did a quick look, they never saw the healthy baby with a heartbeat that had implanted into the tiny opening where my right tube would be if I still had one. It ruptured out of my uterus and I lost half my blood volume into my abdomen. I didn't know it at the time. The symptoms I had I associated with being pregnant and having been on IVF meds - fatigue, bloating, constipation. It wasn't until 3 days later when I noticed a sharp pain in my shoulder when I bent over and took a breath at the same time. I happened to mention it to my RE's (reproductive endocrinologist, IVF doctor) nurse as we talked about blood test results. They told me to go straight to the ER, as it sounded like a blood clot, which can be a side effect of the IVF meds.
We went to the ER, and it took them 7 hours to find the problem. They did a cat scan and an abdominal ultrasound. During the ultrasound, the tech was able to find the baby's heartbeat (mind you, we didn't know about baby #2 - I thought it was the sac in the uterus the nurse practitioner saw at my first fetal ultrasound) and I was elated. I did notice that the placement didn't look right, but the ultrasound tech wasn't concerned so I blew it off. Later that night the on-call OB performed another ultrasound and confirmed our worst fears. The healthy baby was not in my uterus. I was rushed into surgery, where they took the healthy baby and stitched me back up, leaving the sac that was behind in development within the uterus. It didn't have a good prognosis.
After this mess of gross incompentence for which we filed complaints, I chose to be monitored by a clinic that specialized in high risk pregnancies. If the baby in utero was going to develop, I was very high risk having just had a ruptured uterus. The baby did not develop; it became what is known as a blighted ovum, an empty sac. Because of the rupture, I could not have a D&C and I refused meds to terminate as my RE said those meds could interfere with our chances of conceiving in the future with IVF. So I waited it out . . . 8 long weeks . . . finally at 15 weeks gestation, I miscarried the empty sac. This was now our 3rd consecutive heterotopic pregnancy. So rare it is totally unheard of . . . try to find somebody else who has been through that!
The RE felt my body was healed enough to do a FET (frozen embryo transfer, we had 3 frozen embryos left) and we proceeded in June of '08. (Sadly, we lost our beloved female rottie Iria to osteosarcoma a week and a half before the transfer. Honey, our rescued female rottie then entered our lives although she later succumbed to blastomycosis from her days as a stray.) The RE's office had a bit of miscommunication - we only wanted 1 embryo thawed and transferred, and they thawed two. As it turns out, it didn't matter. The first one totally disintegrated upon thawing and the second lost 3 of its 7 cells. So they thawed the last embryo, which came through perfectly. They transferred what I like to call 1 1/2 embryos, and I became pregnant with Kaiden. We don't know which embryo he resulted from but it could have been either. All we knew was that I was finally pregnant the right way, in the right place, and I was being monitored at a clinic that specialized in high risk pregnancies.
The pregnancy itself was fairly uneventful at first, with some dehydration induced spotting that lasted for 3 weeks. As all women are, they offered the option of having an amnio done at 12 weeks to test for various things. We declined. Kaiden was our last embryo and we were out of money to go another round of IVF and I wasn't about to do anything that could possibly cause a miscarriage. An amnio carries that risk. At the 19 week ultrasound it was determined without a doubt that we were having a boy - Kaiden was not shy and put the goods on display for all to see!! The doctors also noticed Kaiden had a shortened nasal bone and told us we now had a 10% chance Kaiden could have Down Syndrome and sent me to Maternal Fetal Medicine for another look and the offer of an amnio, which I refused. They said, as all doctors seem to these days, that if it came back as positive, we could terminate. I told them, after all we've been through, who cares if Kaiden has Down Syndrome! We WANT this child, no matter what, period!
The pregnancy progressed. I must be the luckiest woman alive, during all 4 pregnancies - especially Kaiden's pregnancy, I never got sick. I felt great and had tons of energy - so much I had trouble sleeping. My only discomfort stemmed from carrying him so high that he kicked me under my ribcage. And he was so high that heartburn was constant. Then I began hemorrhaging at 7 months. Although mostly painless, the amount of gushing blood was frightening. The first time was maybe 1/2 cup (it was at this time we lost our wonderful rescued female rottie Honey as she succumbed to blasto. I was not allowed to grieve for her because every time I got upset, the contractions would start. Soon after, our current female rottie Lola entered our lives). The second time was probably a full cup. The third time, I don't even know how much it was but I knew it was very bad. Nick later said the upstairs looked like a murder scene from me running from the bedroom to the bathroom where I continued to gush blood into the toilet. At that point, I knew I wasn't coming home from the hospital until Kaiden was born, which was supposed to be another 3 weeks away. (Because of the previous rupture, I was to have a scheduled c-section at 36 weeks so I wouldn't go into labor and rupture again.)
The placenta had other plans. All the bleeding irritated my uterus so bad I went into premature labor and no meds would stop it. Finally, the doctors decided to see how I did without meds since they weren't doing any good. They said if I had more than 6 contractions in an hour, Kaiden would be born early. Shortly after stopping the meds, I began having 6 contractions per minute and was freaking out over the possibility of another rupture. Within a couple hours, Kaiden was born via emergency c-section. I only got a glimpse of him as they rushed him to the NICU. I have to say, the c-section was an interesting experience - I got to ask the doctor all sorts of questions about my insides while she literally had her hands in there and could answer me.
Kaiden spent 6 weeks in the NICU to finish growing. Overall, he did very well and exceeded his doctors' expectations at every turn. He got to come home on March 10th, 4 days before his original full-term due date.
My spiritual beliefs differ from the norm. I was raised Catholic, and no longer consider myself so. I believe we schedule certain events/people into our lives before we incarnate, specifically to learn from them. Not predestination by any means . . . I believe it is up to us what we learn from the experience - and if we don't learn what we wanted to learn we may repeat that experience whether in this life or the next. So what does this mean in regards to Kaiden? Looking back over it all . . . if we had conceived early on rather than waiting so long to even think about it . . . we probably would have agreed to an amnio and if the baby had tested positive for Down Syndrome . . . we may have chosen to terminate. Not saying we would have, but doctors so highly encourage parents to do so. What if every successive pregnancy had turned out the same way, a baby with Down Syndrome? I think we went through what we went through to ensure we would want our baby no matter what. And I suppose it helped that we didn't have the financial option of trying again if the FET failed. Kaiden chose us as parents, and we chose him to be our son long before we set foot on earth. That's what I believe.
Even Lola chose Kaiden before he was born. We went to the breeder to see a 4 month old pup as we knew Carl, our (sadly, very recently deceased) senior male rottie, needed a companion. This pup completely ignored us. The breeder then brought out a 3 month old pup, who immediately barreled toward me and gently put her gigantic paws on my pregnant belly. Then she went to Nick, then to the other pups to play. She repeatedly came back to me and and placed her paws on my belly. We took her home. I even have a picture of her snoozing cuddled up, with her head resting on my belly.
Kaiden is one incredibly special, very much loved little boy! I couldn't ask for a more perfect child. Even with his latest accomplishement of exorcist-style temper tantrums! :)
I'll start this out with what we went through, and end it with my beliefs because of what happened.
We first started not trying, not preventing in Dec of '04. No pregnancies . . . we thought that the stress from my job (not my job per say, but the people I worked for) was part of the reason I wasn't getting pregnant. Since we planned for me to be a stay-at-home mom anyway, Nick highly encouraged me to quit my job and just stay home. After much consideration (and many frustrating events at work) I finally agreed and left in Feb '06.
A short four months later, we had our first pregnancy. Within a week of finding out, I knew something was wrong. I had excruciating pain in my left side and spotting. I went to the local clinic several times, and each time they sent me away saying I was "just having a miscarriage" and to go home and wait it out. I read about other women's experiences of miscarriage and it didn't fit at all. I felt strongly that I had an ectopic pregnancy with internal bleeding. After 3 weeks of trying to convince the doctors, they finally agreed that it was ectopic, and I was bleeding internally. And they still sent me home, and told me to set up my surgery for the next day with Outpatient Surgery. That was a disaster. Nobody knew what procedures were scheduled, who was doing the surgery, or what was going on. During the surgery, the nurses reported to Nick a bunch of conflicting information. They were taking the ovary, they weren't taking the ovary, or was it the tube?? After the surgery, the doctor came out to Nick and said, (and I quote) "she only needs one" and left. One what? One ovary, one tube, what?? Nobody would answer my questions after the surgery and the doctor claimed he never received my (several) messages. I had to watch my surgery video and compare it to others online to figure out what happened in there. At the post-op appointment, the doctor dropped another bombshell: It was twins. One in the left tube, half of which they removed, and the other was in the uterus, very deteriorated (this is called a heterotopic pregnancy). So deteriorated that it didn't test positive as a "product of conception". He also said that he didn't have to remove my left tube, but did it anyway because I still had my right tube and that one was fine.
After this, we began actively trying to conceive and 5 months after the surgery, I was pregnant again. And one week later, the spotting began and I miscarried and thought it was over. Turns out it wasn't. I was suprised to find out at my follow up doctor appointment (I went to a different clinic this time) that I was still indeed pregnant. The doctor felt it was another ectopic, but refused to do an ultrasound to confirm and encouraged me to terminate. Without confirmation, I refused to terminate the pregnancy. What if they were wrong? Turns out I was wrong and they were right, it was another ectopic and this time I lost the entirety of my right tube. Since I had also miscarried, it meant this was another heterotopic pregnancy. One is rare, but two back to back is extremely rare.
We moved on to IVF (invitro fertilization) and I became pregnant for the 3rd time at the end of 2007 with the transfer of 2 fresh embryos. I gave the local clinic another chance. Given my history, I asked they be extremely thorough and careful in the event of another ectopic or heterotopic pregnancy. Even with IVF, the risk exists. Instead, they assured me that would never happen and only did a quick sweep for the first fetal ultrasound. The nurse practitioner (who "specializes in ultrasounds") saw one sac in the uterus that was behind in development. Looking back, I know I ruptured the very next day. Because they only did a quick look, they never saw the healthy baby with a heartbeat that had implanted into the tiny opening where my right tube would be if I still had one. It ruptured out of my uterus and I lost half my blood volume into my abdomen. I didn't know it at the time. The symptoms I had I associated with being pregnant and having been on IVF meds - fatigue, bloating, constipation. It wasn't until 3 days later when I noticed a sharp pain in my shoulder when I bent over and took a breath at the same time. I happened to mention it to my RE's (reproductive endocrinologist, IVF doctor) nurse as we talked about blood test results. They told me to go straight to the ER, as it sounded like a blood clot, which can be a side effect of the IVF meds.
We went to the ER, and it took them 7 hours to find the problem. They did a cat scan and an abdominal ultrasound. During the ultrasound, the tech was able to find the baby's heartbeat (mind you, we didn't know about baby #2 - I thought it was the sac in the uterus the nurse practitioner saw at my first fetal ultrasound) and I was elated. I did notice that the placement didn't look right, but the ultrasound tech wasn't concerned so I blew it off. Later that night the on-call OB performed another ultrasound and confirmed our worst fears. The healthy baby was not in my uterus. I was rushed into surgery, where they took the healthy baby and stitched me back up, leaving the sac that was behind in development within the uterus. It didn't have a good prognosis.
After this mess of gross incompentence for which we filed complaints, I chose to be monitored by a clinic that specialized in high risk pregnancies. If the baby in utero was going to develop, I was very high risk having just had a ruptured uterus. The baby did not develop; it became what is known as a blighted ovum, an empty sac. Because of the rupture, I could not have a D&C and I refused meds to terminate as my RE said those meds could interfere with our chances of conceiving in the future with IVF. So I waited it out . . . 8 long weeks . . . finally at 15 weeks gestation, I miscarried the empty sac. This was now our 3rd consecutive heterotopic pregnancy. So rare it is totally unheard of . . . try to find somebody else who has been through that!
The RE felt my body was healed enough to do a FET (frozen embryo transfer, we had 3 frozen embryos left) and we proceeded in June of '08. (Sadly, we lost our beloved female rottie Iria to osteosarcoma a week and a half before the transfer. Honey, our rescued female rottie then entered our lives although she later succumbed to blastomycosis from her days as a stray.) The RE's office had a bit of miscommunication - we only wanted 1 embryo thawed and transferred, and they thawed two. As it turns out, it didn't matter. The first one totally disintegrated upon thawing and the second lost 3 of its 7 cells. So they thawed the last embryo, which came through perfectly. They transferred what I like to call 1 1/2 embryos, and I became pregnant with Kaiden. We don't know which embryo he resulted from but it could have been either. All we knew was that I was finally pregnant the right way, in the right place, and I was being monitored at a clinic that specialized in high risk pregnancies.
The pregnancy itself was fairly uneventful at first, with some dehydration induced spotting that lasted for 3 weeks. As all women are, they offered the option of having an amnio done at 12 weeks to test for various things. We declined. Kaiden was our last embryo and we were out of money to go another round of IVF and I wasn't about to do anything that could possibly cause a miscarriage. An amnio carries that risk. At the 19 week ultrasound it was determined without a doubt that we were having a boy - Kaiden was not shy and put the goods on display for all to see!! The doctors also noticed Kaiden had a shortened nasal bone and told us we now had a 10% chance Kaiden could have Down Syndrome and sent me to Maternal Fetal Medicine for another look and the offer of an amnio, which I refused. They said, as all doctors seem to these days, that if it came back as positive, we could terminate. I told them, after all we've been through, who cares if Kaiden has Down Syndrome! We WANT this child, no matter what, period!
The pregnancy progressed. I must be the luckiest woman alive, during all 4 pregnancies - especially Kaiden's pregnancy, I never got sick. I felt great and had tons of energy - so much I had trouble sleeping. My only discomfort stemmed from carrying him so high that he kicked me under my ribcage. And he was so high that heartburn was constant. Then I began hemorrhaging at 7 months. Although mostly painless, the amount of gushing blood was frightening. The first time was maybe 1/2 cup (it was at this time we lost our wonderful rescued female rottie Honey as she succumbed to blasto. I was not allowed to grieve for her because every time I got upset, the contractions would start. Soon after, our current female rottie Lola entered our lives). The second time was probably a full cup. The third time, I don't even know how much it was but I knew it was very bad. Nick later said the upstairs looked like a murder scene from me running from the bedroom to the bathroom where I continued to gush blood into the toilet. At that point, I knew I wasn't coming home from the hospital until Kaiden was born, which was supposed to be another 3 weeks away. (Because of the previous rupture, I was to have a scheduled c-section at 36 weeks so I wouldn't go into labor and rupture again.)
The placenta had other plans. All the bleeding irritated my uterus so bad I went into premature labor and no meds would stop it. Finally, the doctors decided to see how I did without meds since they weren't doing any good. They said if I had more than 6 contractions in an hour, Kaiden would be born early. Shortly after stopping the meds, I began having 6 contractions per minute and was freaking out over the possibility of another rupture. Within a couple hours, Kaiden was born via emergency c-section. I only got a glimpse of him as they rushed him to the NICU. I have to say, the c-section was an interesting experience - I got to ask the doctor all sorts of questions about my insides while she literally had her hands in there and could answer me.
Kaiden spent 6 weeks in the NICU to finish growing. Overall, he did very well and exceeded his doctors' expectations at every turn. He got to come home on March 10th, 4 days before his original full-term due date.
My spiritual beliefs differ from the norm. I was raised Catholic, and no longer consider myself so. I believe we schedule certain events/people into our lives before we incarnate, specifically to learn from them. Not predestination by any means . . . I believe it is up to us what we learn from the experience - and if we don't learn what we wanted to learn we may repeat that experience whether in this life or the next. So what does this mean in regards to Kaiden? Looking back over it all . . . if we had conceived early on rather than waiting so long to even think about it . . . we probably would have agreed to an amnio and if the baby had tested positive for Down Syndrome . . . we may have chosen to terminate. Not saying we would have, but doctors so highly encourage parents to do so. What if every successive pregnancy had turned out the same way, a baby with Down Syndrome? I think we went through what we went through to ensure we would want our baby no matter what. And I suppose it helped that we didn't have the financial option of trying again if the FET failed. Kaiden chose us as parents, and we chose him to be our son long before we set foot on earth. That's what I believe.
Even Lola chose Kaiden before he was born. We went to the breeder to see a 4 month old pup as we knew Carl, our (sadly, very recently deceased) senior male rottie, needed a companion. This pup completely ignored us. The breeder then brought out a 3 month old pup, who immediately barreled toward me and gently put her gigantic paws on my pregnant belly. Then she went to Nick, then to the other pups to play. She repeatedly came back to me and and placed her paws on my belly. We took her home. I even have a picture of her snoozing cuddled up, with her head resting on my belly.
Kaiden is one incredibly special, very much loved little boy! I couldn't ask for a more perfect child. Even with his latest accomplishement of exorcist-style temper tantrums! :)
Kaiden's accomplishments
It has now been almost 4 weeks since Kaiden had his last seizure. And holy cow, has his development run with the wind! In this short amount of time, Kaiden has gained 4 - 6 months of development and now functions at about a 12 month level. If you take his prematurity into account, he's now only 3.5 months behind, if not, he's about 5 months behind.
Below is his accomplishments list, to date being seizure free. Prior to this, he had been functioning at about the same level as when the seizures started, right around the 6 - 7 month age range. He never regressed, but he didn't make much progress either. At 11 months, he said his first word (Mama) 3 times, and even now still has yet to repeat it. His other accomplishment, around 11 - 12 months was beginning stay in an upright sitting position unassisted, as well as banging his little hands on toys within his reach. The toy play began to progress after we started the calcium supplement around 12 months.
5/29/10 seizure free
5/31/10 noted that Kaiden is now smiling & giggling again without direct interaction, haven't seen that in months
Kaiden is standing and able to hold onto something all by himself for support for a few seconds rather than immediately falling over
Responds to tickling instead of no response whatsoever to tickling
6/1/10 able to get picture of Kaiden standing holding onto edge of pack & play by himself
6/3/10 therapists say Kaiden is signing “eat”, tried to teach him signs last year to no avail, had just started up again 1 – 2 weeks ago
6/8/10 Kaiden trying to crawl, lifting his belly off the floor, arms shaking with effort . . . trying to bring knees under him
6/9/10 consistently bouncing to music, responding to sound (hearing test showed hearing in perfect order, just not realizing sounds have meaning, concern about auditory nerve function)
Laughing at toys
6/10/10 signed “more”
really enjoying his books and toys that make noise
rolling to and reaching out for toys
6/11/10 pulling toys toward himself to play with
6/12/10 very chattery while looking around, like he has his own language
Immediately looking for eye contact upon us entering a room and verbally greeting
6/13/10 Showing preference for toys by throwing the one he doesn’t want
6/15/10 has been very consistent in the last 2 weeks in waiting for me to take off his diaper to poop, thinking it wouldn’t hurt to start some toilet training
6/16/10 pulled himself into a full 4-point position
Playing with the water from the sprayer during bath
6/18/10 deliberately picked up loaded spoon, managed to get it in his mouth, and then banged the now-empty spoon around for awhile. Happened at lunch and again at dinner, repeated results 6/19/10 – 6/20/10, even going for (and drinking from) my glass.
6/23/10 rocking motion while in 4 point position
Signed "drink"
6/25/10 temper tantrums, exorcist-style with screaming/flailing. And since Kaiden is extra flexible with Down Syndrome, his little head really can just about revolve!
Kaiden has come so far that many people have commented exactly what we have been wondering - is it possible . . . is it even remotely possible that nightshade foods have something to do with the developmental delays with Down Syndrome? It could make sense, with them not being able to process foods as well. Not saying that this is a cure, by any means!! But, if it helps Kaiden . . . we could have stumbled onto something HUGE. Or we could be an isolated case.
With that, I've been trying to get the word out. If there is even the remotest chance that this will help somebody else, I have to try. This blog, my JM friends, Facebook, and now to try the real world. I did send a very detailed letter to Kaiden's neurologist stating my findings. It's been 3 weeks and no response. His pediatrician called the day she read the letter to say how thrilled she was!
I tried the closest local news station, emailed them Friday night . . . no response yet but we also had a slew of nasty weather. They may have lost power and who knows, either the email got eaten or maybe they are just not interested. I emailed another news station today, ironically it's the same news guy that tried to help us out when Lola got lost - he switched jobs and is now at this station. I hope to hear back from him, he was really nice. If not, though, I will keep trying until I find some way to get it out there.
Kaiden's physical therapist said we need to get on Oprah, better yet, Rachel Ray so I can show them the tasty recipes I've come up with that work with Kaiden's dietary needs. Of course, she just wants to go with! Hahahaha . . . we love her to death so that would be fine with me!
Below is his accomplishments list, to date being seizure free. Prior to this, he had been functioning at about the same level as when the seizures started, right around the 6 - 7 month age range. He never regressed, but he didn't make much progress either. At 11 months, he said his first word (Mama) 3 times, and even now still has yet to repeat it. His other accomplishment, around 11 - 12 months was beginning stay in an upright sitting position unassisted, as well as banging his little hands on toys within his reach. The toy play began to progress after we started the calcium supplement around 12 months.
5/29/10 seizure free
5/31/10 noted that Kaiden is now smiling & giggling again without direct interaction, haven't seen that in months
Kaiden is standing and able to hold onto something all by himself for support for a few seconds rather than immediately falling over
Responds to tickling instead of no response whatsoever to tickling
6/1/10 able to get picture of Kaiden standing holding onto edge of pack & play by himself
6/3/10 therapists say Kaiden is signing “eat”, tried to teach him signs last year to no avail, had just started up again 1 – 2 weeks ago
6/8/10 Kaiden trying to crawl, lifting his belly off the floor, arms shaking with effort . . . trying to bring knees under him
6/9/10 consistently bouncing to music, responding to sound (hearing test showed hearing in perfect order, just not realizing sounds have meaning, concern about auditory nerve function)
Laughing at toys
6/10/10 signed “more”
really enjoying his books and toys that make noise
rolling to and reaching out for toys
6/11/10 pulling toys toward himself to play with
6/12/10 very chattery while looking around, like he has his own language
Immediately looking for eye contact upon us entering a room and verbally greeting
6/13/10 Showing preference for toys by throwing the one he doesn’t want
6/15/10 has been very consistent in the last 2 weeks in waiting for me to take off his diaper to poop, thinking it wouldn’t hurt to start some toilet training
6/16/10 pulled himself into a full 4-point position
Playing with the water from the sprayer during bath
6/18/10 deliberately picked up loaded spoon, managed to get it in his mouth, and then banged the now-empty spoon around for awhile. Happened at lunch and again at dinner, repeated results 6/19/10 – 6/20/10, even going for (and drinking from) my glass.
6/23/10 rocking motion while in 4 point position
Signed "drink"
6/25/10 temper tantrums, exorcist-style with screaming/flailing. And since Kaiden is extra flexible with Down Syndrome, his little head really can just about revolve!
Kaiden has come so far that many people have commented exactly what we have been wondering - is it possible . . . is it even remotely possible that nightshade foods have something to do with the developmental delays with Down Syndrome? It could make sense, with them not being able to process foods as well. Not saying that this is a cure, by any means!! But, if it helps Kaiden . . . we could have stumbled onto something HUGE. Or we could be an isolated case.
With that, I've been trying to get the word out. If there is even the remotest chance that this will help somebody else, I have to try. This blog, my JM friends, Facebook, and now to try the real world. I did send a very detailed letter to Kaiden's neurologist stating my findings. It's been 3 weeks and no response. His pediatrician called the day she read the letter to say how thrilled she was!
I tried the closest local news station, emailed them Friday night . . . no response yet but we also had a slew of nasty weather. They may have lost power and who knows, either the email got eaten or maybe they are just not interested. I emailed another news station today, ironically it's the same news guy that tried to help us out when Lola got lost - he switched jobs and is now at this station. I hope to hear back from him, he was really nice. If not, though, I will keep trying until I find some way to get it out there.
Kaiden's physical therapist said we need to get on Oprah, better yet, Rachel Ray so I can show them the tasty recipes I've come up with that work with Kaiden's dietary needs. Of course, she just wants to go with! Hahahaha . . . we love her to death so that would be fine with me!
Monday, June 7, 2010
Kaiden's diet
As individuals with Down Syndrome are more likely to be lactose and gluten intolerant, I made the decision to go not only dairy free, but completely legume and grain free. I'm not crazy. This is how our ancestors ate. This is also the ancient Taoist diet - and I mean ancient, before the 5 sacred grains. Think, if you were a caveman or part of a nomadic tribe . . . you picked it fresh and ate it as you went. Basically what's called the "paleo diet" or the "raw" diet . . . except I cook our meats . . . I say cavemen had fire and knew how to use it! I do cook some veggies as well, and I do know that anything heated higher than 118F, the heat begins to destroy essential enzymes and nutrients.
Dairy free? But didn't you know you can get soy milk, almond milk, or rice milk you say? What is this obsession people have with drinking milk? Milk comes from animals . . . not plants - that's not milk and never will be. It just looks like milk to make those who are lactose intolerant feel more normal, like they are drinking milk like anybody else. Who first looked at a cow and decided that should be our primary source of calcium instead of fresh foods anyway? And why are people today so squeamish about breastmilk? It's human milk, meant for human children to consume. It's best suited to their needs. Cow's milk is best suited to calves. Soy and rice are grains, so they aren't even an option in my book. Yes, I do realize there are situations where breastmilk is not an option . . . you do what you gotta do.
Grain free you say? Why? Well, because grains inhibit absorbtion of certain nutrients, calcium being one of them. Calcium is essential to the nervous system and as Kaiden was already having trouble with that, why make it harder for him? Grains are not an essential part of our diet. They're just convenient these days. We also stay away from as much processed foods as possible.
A little vent here . . . I don't think the government wants us to be healthy . . . think about the FDA and what they have approved as food - all sorts of non-food artificial colors, preservatives, flavorings, etc. And, if we all stopped eating processed foods, dairy, and grains, think of all those people who would be out of jobs. Farmers . . . unless they switched to growing something else. People who work in the factories that make our processed "foods". People who work in the factories that make the packaging. People would be healthier, so there would be much less need for doctors, nurses, clinics, hospitals, etc. But I digress . . .
Back to Kaiden's diet. If we take away dairy, legumes, grains, and now nightshade foods, what the heck is left to feed him, you say? Plenty! Kaiden eats:
Beef
Chicken
Turkey
Pork
Fish
Walnuts
Pecans
Sunflower seeds
Sesame seeds
Almonds
Pine nuts
Coconut
Acorn squash
Butternut squash
Spaghetti squash
Summer squash
Zucchini
Cauliflower
Rutabaga
Turnip
Asparagus
Kohlrabi
Cucumbers
Radishes
Cabbage
Celery
Mushrooms
All lettuces/leafy greens including Spinach
Fresh/dried herbs
Onion
Garlic
Apples
Apricots
Bananas
Pears
Cranberries (sweetened)
Cherries
Blackberries
Raspberries
Blueberries
Mangoes (frozen, got a rash from fresh)
Strawberries
Pineapple
Avocados
Grapes
Hemp – yes, you can eat it! You can get it dried/powdered like you buy your spices & herbs.
Maple syrup
I use olive oil to cook with.
Kaiden drinks my breastmilk as well as water. Juices are fine but he doesn’t get them that often, once/twice per week usually or less:
Apple
Orange
Blueberry
Grape (purple, healthier for you than white)
Prune
Did you know you can actually get fresh squeezed, not-from-concentrate juices at Walmart? Priced decently too.
Technically, maple syrup, olive oil, and juices are processed foods. But any processed foods I buy I make sure are 100% natural - just real food, no other crap.
There's plenty more fresh foods out there than the short list above. It's true, once you switch to whole foods, you lose your taste for processed foods. I actually feel ill now after eating processed foods with crap ingredients. Oreos are my nemesis . . . and yes, I do realize some of that passes thru my breastmilk to Kaiden. That's why they are very rare treats.
Dairy free? But didn't you know you can get soy milk, almond milk, or rice milk you say? What is this obsession people have with drinking milk? Milk comes from animals . . . not plants - that's not milk and never will be. It just looks like milk to make those who are lactose intolerant feel more normal, like they are drinking milk like anybody else. Who first looked at a cow and decided that should be our primary source of calcium instead of fresh foods anyway? And why are people today so squeamish about breastmilk? It's human milk, meant for human children to consume. It's best suited to their needs. Cow's milk is best suited to calves. Soy and rice are grains, so they aren't even an option in my book. Yes, I do realize there are situations where breastmilk is not an option . . . you do what you gotta do.
Grain free you say? Why? Well, because grains inhibit absorbtion of certain nutrients, calcium being one of them. Calcium is essential to the nervous system and as Kaiden was already having trouble with that, why make it harder for him? Grains are not an essential part of our diet. They're just convenient these days. We also stay away from as much processed foods as possible.
A little vent here . . . I don't think the government wants us to be healthy . . . think about the FDA and what they have approved as food - all sorts of non-food artificial colors, preservatives, flavorings, etc. And, if we all stopped eating processed foods, dairy, and grains, think of all those people who would be out of jobs. Farmers . . . unless they switched to growing something else. People who work in the factories that make our processed "foods". People who work in the factories that make the packaging. People would be healthier, so there would be much less need for doctors, nurses, clinics, hospitals, etc. But I digress . . .
Back to Kaiden's diet. If we take away dairy, legumes, grains, and now nightshade foods, what the heck is left to feed him, you say? Plenty! Kaiden eats:
Beef
Chicken
Turkey
Pork
Fish
Walnuts
Pecans
Sunflower seeds
Sesame seeds
Almonds
Pine nuts
Coconut
Acorn squash
Butternut squash
Spaghetti squash
Summer squash
Zucchini
Cauliflower
Rutabaga
Turnip
Asparagus
Kohlrabi
Cucumbers
Radishes
Cabbage
Celery
Mushrooms
All lettuces/leafy greens including Spinach
Fresh/dried herbs
Onion
Garlic
Apples
Apricots
Bananas
Pears
Cranberries (sweetened)
Cherries
Blackberries
Raspberries
Blueberries
Mangoes (frozen, got a rash from fresh)
Strawberries
Pineapple
Avocados
Grapes
Hemp – yes, you can eat it! You can get it dried/powdered like you buy your spices & herbs.
Maple syrup
I use olive oil to cook with.
Kaiden drinks my breastmilk as well as water. Juices are fine but he doesn’t get them that often, once/twice per week usually or less:
Apple
Orange
Blueberry
Grape (purple, healthier for you than white)
Prune
Did you know you can actually get fresh squeezed, not-from-concentrate juices at Walmart? Priced decently too.
Technically, maple syrup, olive oil, and juices are processed foods. But any processed foods I buy I make sure are 100% natural - just real food, no other crap.
There's plenty more fresh foods out there than the short list above. It's true, once you switch to whole foods, you lose your taste for processed foods. I actually feel ill now after eating processed foods with crap ingredients. Oreos are my nemesis . . . and yes, I do realize some of that passes thru my breastmilk to Kaiden. That's why they are very rare treats.
Sunday, June 6, 2010
Introduction
I wanted to start this blog to find a public place to talk about my son's conditions in hopes of reaching others suffering from the same thing. Kaiden has Down Syndrome, and was diagnosed with benign myoclonic seizures on September 22, 2009. The seizures had been going on for about a month and I had already noted that sweet potatoes and carrots seemed to intensify his seizure activity. The neurologist we saw blew it off and told me diet had nothing to do with it. In his official report to Kaiden's pediatrician, he wrote "I doubt an underlying metabolic abnormality".
What frustrates me the most is western medicine's take on Down Syndrome . . . anything that comes up, they say, "well, he has Down Syndrome so of course he's going to have issues. Deal with it." Now, there is plenty of evidence out there that the extra chromosome causes metabolic issues, they don't process nutrients correctly/as efficiently as the non-Down Syndrome population. Yet there is little information out there about what to do about it . . . it's more so presented as "yes, we know about it, but there's nothing you can do so we aren't going to try. Get over it." . There is, however, Targeted Nutrition Intervention, which targets the mental development. There are a few companies that sell nutritional supplements designed for Down Syndrome based on the research of Dr. Henry Turkel & Dr. Jack Warner, but at a pretty high price. Some parents swear by it, some don't. More on that later.
Something else interesting I found . . . Down's individuals seem to have some of the same dietary needs as autistic individuals - lactose intolerant, gluten intolerant, etc. Again, there is little information on what to do about this in regards to Down Syndrome . . . yet there is tons of info out there for the autistic community.
Let me get back to the beginning . . . Kaiden was born via c-section at 33 weeks and 3 days due to an overly large placenta that seemed intent upon evicting him and spent 6 weeks in the NICU to finish growing. Due to some issues with the NICU nurses, I ended up exclusively pumping for Kaiden rather than breastfeeding. Never, EVER, let the NICU nurses give your infant a fast flow nipple if you intend to breastfeed. Good luck getting them back to the breast after that! I am still angry they did it without my permission. Had I known, I would never have let them. Anyway . . .at Kaiden's 6 month well visit, he was found to be severely anemic (due to his prematurity and him not yet being on solid foods, getting exclusively breastmilk). His hemoglobin had dropped to 5. Scary thing, I hadn't noticed. Sure, he was a little pale, but he has my skin tone and blonde hair. I had a tan and had kept him out of the sun. The pediatrician did note that his iron level did not seem to bother him, he was happy and active and was hitting milestones.
Unfortunately, at that appointment, I let them vaccinate him with the Hep B and D-TAP vaccines . . . the CDC states that any ill child should not be vaccinated at that time . . . the Hep B vax contains yeast. The D-TAP hasn't been definitively proven but there seems to be a correlation between infants getting the D-TAP vax and developing seizures. Kaiden was also prescribed an iron supplement and I was instructed to start him on solids whether or not he was ready. Most iron supplements for children are filled with sugar. Gee, guess what yeast feeds on . . . then a couple weeks later I went on antibiotics that were supposed to be safe for breastfeeding . . . and BAM all of a sudden, Kaiden had a massive yeast overload. The antibiotics I took were the last straw for his little system, wiped the good bacteria in his gut right out. Stinky, sticky, yeasty diapers, cradle cap, and projectile vomiting. Because he didn't have thrush, his pediatrician blew me off 3 times about it, said there was no way Kaiden could have a yeast infection. Poor kid, you could tell he felt just awful . . . and then within a few days the (benign myoclonic) seizures started.
I tried everything under the sun to find the cause of the seizures . . . I looked at the vaccines he'd been given, the dosage of the iron supplement, the antibiotics I had taken . . . all of which had seizures as a possible side effect. However, the details do not go into the type of seizure. I had noted that carrots and sweet potatoes intensified his seizure activity and stopped feeding him those foods. I had found some evidence that some (not most) individuals with Down Syndrome do not process beta carotene well, and came across an individual with epilepsy that said carrots did it for them.
(As an aside, I stopped the iron supplements and began giving Kaiden a tiny dosage of powdered kelp instead for his iron. Worked wonders, his hemoglobin is and remains excellent. It's super cheap and full of all sorts of good nutrition . . . DON'T waste your money with iron supplements when you can use FOOD to do it! You just have to be careful to give TINY doses if you're going to use if for an extended period of time.)
The seizures continued. The neurologist started Kaiden on vitamin B6, but said he would most likely need topiramate to control the seizures with repeat EEG's and a future MRI. We were told that benign myoclonic seizures would not affect Kaiden cognitvely, but as there was a concern it was actually West Syndrome, we were to watch carefully in the event of cognitive regression. Because of the side effects of western medicine, we chose not to go that route.
The vitamin B6 did absolutely nothing for Kaiden's seizures. At their worst, he was having 6 clusters per day with one spasm every 10 - 15 seconds for anywhere from 10 - 45 minutes. The longer the clusters lasted, the more time between spasms until they finally stopped. He would scream and cry after each spasm. These clusters would happen at random times of the day and night. As a parent, you feel so frustrated and want to cry right along with them . . . you feel powerless to stop it, yet you can't cushion them forever. The seizures would throw Kaiden forward violently, and he would smack his forehead on his toys, hard enough to bruise. I kept my homemade salve on hand, which kept away the bruising. The best way to describe these is like taking a bow, very hard and fast, and without your permission.
Because I am a huge fan of natural remedies, and not a fan of western medicine, we started giving Kaiden Native Remedies' Epi-Still and Triple Complex Nerve Tonic. The nerve tonic made him happier, no doubt about that. Epi-Still significantly reduced, but not eliminated his seizures. It reduced them down to an average of 4 - 10 single spasms per day over the course of 3 months and he didn't cry nearly as much when having a seizure.
The more research I did into seizures and the nervous system, I decided to try giving Kaiden calcium supplements to help support the nervous system along with the Native Remedies supplements. The calcium supplement also contained vitamin D3, magnesium, and vitamin K. This was about a week before his first birthday. Overnight, I noticed Kaiden was more alert and active and loud! This is where I began looking into Targeted Nutrition Intervention. I hadn't gotten into it previously as the reports I read said the Down's children would begin reaching milestones reported by happy parents . . . but that they also typically reached them at the same time as those not taking the supplements. The idea behind it is that Down's individuals do not process nutrients correctly/as efficiently as the non-Down's population does and that they need extra nutrients to compensate. It's not about mega doses, but finding the right dosage for the individual. Since I saw results overnight with just a calcium supplement, I wanted to try it all.
Because Kaiden was sensitive to certain foods, I researched as much as I possibly could and began slowly adding supplements to his routine rather than just buying a pre-made blend. My goal was to get him to the point we could go with a premade blend but I had to try all those ingredients separately. And I'm glad I did, found somethings he didn't tolerate well. I will note, that the over-the-counter supplements, even in infant doses, gave Kaiden really loose stools. Which, of course, he would let loose while bouncing in his excersaucer. Yay, poop down his legs and up his back!! Good thing it was winter and it was all contained in his sleeper! YUCK! And it didn't matter if we used cloth or disposables . . . there wasn't a diaper in the world that could hold it in. Maybe a garbage bag and duct tape, I don't know!
Eventually I moved Kaiden to a whole foods vitamin by my favorite company, Dr. Christopher's. Along with their Kid-E-Mins, Kaiden also gets their Kid-E-Calc (calcium) and when we ran out of the Native Remedies supplements, I gave him Dr. Christopher's Ear & Nerve Tonic and Kid-E-Trac (emotional wellbeing, helps the child to focus). He also gets choline bitratrate, TMG, tryptophan, and grapeseed extract. I don't really think the tryptophan does anything for him, so when we run out, I do not plan to continue that one.
The Kid-E-Mins & Kid-E-Calc made one HUGE difference noticeable within 48 hours . . . nice, normal SOLID poop! Soooooo much better!!!! The Ear & Nerve tonic . . . overnight Kaiden's balance improved and I could actually carry him around with one arm without him falling backward. What a relief!
Back to the seizures . . . I didn't notice a reduction in the amount of seizures, but rather a decrease in their severity. He was still having on average 4 - 10 single spasms per day but most of them were pretty mild. He would have a few though, that would lock him up for 2 - 3 seconds. Completely locked up, couldn't breathe . . . sometimes it would take a minute or two for Kaiden to snap out of it once it was over.
And back my belief that diet has everything to do with his seizures, no matter what the neurologist said . . . as far as the carrots & sweet potatoes went, it's not like I gave them to him once and noted activity . . . I tried on 3 separate occasions with the same, repeated result. A day and a half later each time, his seizure activity spiked. So I stopped giving him those foods. By now, Kaiden was pretty well on table foods. I had thought that he was spiking after eating spaghetti and tacos, but wasn't sure as the activity didn't seem much worse than average. One weekend, I ate an eggplant dish from Buca. It was super tasty, and a HUGE dish - took me 3 days to eat it all. And boy, did Kaiden's seizure activity spike. It was really bad, poor little guy. Once I finally figured out it was the eggplant doing it (I had never eaten eggplant before), I pumped & dumped all my fresh milk and gave Kaiden frozen breastmilk for a few days, and his seizure activity went back down as expected. Several months later, in late April 2010, I tried some fresh green peppers since Kaiden was doing well on table foods. (Kaiden had been sensitive to when I ate fresh green peppers all along, giving him a rash and made him painfully gassy. I stopped eating those long before the seizures started.) I ate a tiny amount on a Subway sandwich and didn't notice any significant difference in Kaiden, so a few days later I had a good helping of them at Chipotle. A day and a half later . . . on Mother's Day no less . . . Kaiden's seizure activity spiked like it had done with the eggplant. He spent Mother's Day having seizures and screaming. For several days after that I would literally walk around the house saying, "what the F do eggplant and green peppers have in common that Kaiden reacts so badly to them?" Then finally, I got the bright idea to type in Google, "green pepper eggplant have in common". And the connection came up . . . they are both members of the nightshade (solanaceae) family. As are tomatoes (remember spaghetti & tacos?), potatoes, all peppers - sweet and hot, paprika, ground cherries, and lots more foods I wasn't familiar with. It was like the lightbulb finally clicked on.
Being into natural remedies, I am familiar with some of the properties of deadly nightshade but never thought about foods of the nightshade family. I was using tomatoes, paprika, and chili peppers on a regular basis. Nightshade foods cause the body to excrete calcium, and calcium is essential to the nervous system. It is one of those plants that is used to treat in tiny doses, but in high doses causes the problem you are trying to treat. Eating nightshade foods = high doses.
I immediately eliminated nightshade foods from my & Kaiden's diets, and within a few days, saw a significant reduction in his seizure activity. Then I ate a grilled chicken sandwich from Dairy Queen (contained mayo, which has paprika in it, and a slice of tomato). A day and a half later, Kaiden's seizure activity spiked. When it went back down, I ate a hamburger with mustard (contains paprika) and as expected, a day and a half later his seizure activity spiked again. That was enough of a "lab test" for me, and I completely eliminated nightshade foods for both of us. Kaiden's seizure activity dropped again, and on May 28th 2010, he had his last seizure.
Within one week of being seizure free, Kaiden has become so much more alert, so much happier . . . he used to smile all the time before the seizures started and during the time he had them, a smile was a pretty rare thing. He smiles and giggles all the time now, it brings me to tears! Also within that first week, Kaiden began standing, supporting himself by holding onto something rather than relying on us to hold him upright. He began signing back his first "word", the sign for "eat".
And the neurologist said diet had nothing to do with it.
What frustrates me the most is western medicine's take on Down Syndrome . . . anything that comes up, they say, "well, he has Down Syndrome so of course he's going to have issues. Deal with it." Now, there is plenty of evidence out there that the extra chromosome causes metabolic issues, they don't process nutrients correctly/as efficiently as the non-Down Syndrome population. Yet there is little information out there about what to do about it . . . it's more so presented as "yes, we know about it, but there's nothing you can do so we aren't going to try. Get over it." . There is, however, Targeted Nutrition Intervention, which targets the mental development. There are a few companies that sell nutritional supplements designed for Down Syndrome based on the research of Dr. Henry Turkel & Dr. Jack Warner, but at a pretty high price. Some parents swear by it, some don't. More on that later.
Something else interesting I found . . . Down's individuals seem to have some of the same dietary needs as autistic individuals - lactose intolerant, gluten intolerant, etc. Again, there is little information on what to do about this in regards to Down Syndrome . . . yet there is tons of info out there for the autistic community.
Let me get back to the beginning . . . Kaiden was born via c-section at 33 weeks and 3 days due to an overly large placenta that seemed intent upon evicting him and spent 6 weeks in the NICU to finish growing. Due to some issues with the NICU nurses, I ended up exclusively pumping for Kaiden rather than breastfeeding. Never, EVER, let the NICU nurses give your infant a fast flow nipple if you intend to breastfeed. Good luck getting them back to the breast after that! I am still angry they did it without my permission. Had I known, I would never have let them. Anyway . . .at Kaiden's 6 month well visit, he was found to be severely anemic (due to his prematurity and him not yet being on solid foods, getting exclusively breastmilk). His hemoglobin had dropped to 5. Scary thing, I hadn't noticed. Sure, he was a little pale, but he has my skin tone and blonde hair. I had a tan and had kept him out of the sun. The pediatrician did note that his iron level did not seem to bother him, he was happy and active and was hitting milestones.
Unfortunately, at that appointment, I let them vaccinate him with the Hep B and D-TAP vaccines . . . the CDC states that any ill child should not be vaccinated at that time . . . the Hep B vax contains yeast. The D-TAP hasn't been definitively proven but there seems to be a correlation between infants getting the D-TAP vax and developing seizures. Kaiden was also prescribed an iron supplement and I was instructed to start him on solids whether or not he was ready. Most iron supplements for children are filled with sugar. Gee, guess what yeast feeds on . . . then a couple weeks later I went on antibiotics that were supposed to be safe for breastfeeding . . . and BAM all of a sudden, Kaiden had a massive yeast overload. The antibiotics I took were the last straw for his little system, wiped the good bacteria in his gut right out. Stinky, sticky, yeasty diapers, cradle cap, and projectile vomiting. Because he didn't have thrush, his pediatrician blew me off 3 times about it, said there was no way Kaiden could have a yeast infection. Poor kid, you could tell he felt just awful . . . and then within a few days the (benign myoclonic) seizures started.
I tried everything under the sun to find the cause of the seizures . . . I looked at the vaccines he'd been given, the dosage of the iron supplement, the antibiotics I had taken . . . all of which had seizures as a possible side effect. However, the details do not go into the type of seizure. I had noted that carrots and sweet potatoes intensified his seizure activity and stopped feeding him those foods. I had found some evidence that some (not most) individuals with Down Syndrome do not process beta carotene well, and came across an individual with epilepsy that said carrots did it for them.
(As an aside, I stopped the iron supplements and began giving Kaiden a tiny dosage of powdered kelp instead for his iron. Worked wonders, his hemoglobin is and remains excellent. It's super cheap and full of all sorts of good nutrition . . . DON'T waste your money with iron supplements when you can use FOOD to do it! You just have to be careful to give TINY doses if you're going to use if for an extended period of time.)
The seizures continued. The neurologist started Kaiden on vitamin B6, but said he would most likely need topiramate to control the seizures with repeat EEG's and a future MRI. We were told that benign myoclonic seizures would not affect Kaiden cognitvely, but as there was a concern it was actually West Syndrome, we were to watch carefully in the event of cognitive regression. Because of the side effects of western medicine, we chose not to go that route.
The vitamin B6 did absolutely nothing for Kaiden's seizures. At their worst, he was having 6 clusters per day with one spasm every 10 - 15 seconds for anywhere from 10 - 45 minutes. The longer the clusters lasted, the more time between spasms until they finally stopped. He would scream and cry after each spasm. These clusters would happen at random times of the day and night. As a parent, you feel so frustrated and want to cry right along with them . . . you feel powerless to stop it, yet you can't cushion them forever. The seizures would throw Kaiden forward violently, and he would smack his forehead on his toys, hard enough to bruise. I kept my homemade salve on hand, which kept away the bruising. The best way to describe these is like taking a bow, very hard and fast, and without your permission.
Because I am a huge fan of natural remedies, and not a fan of western medicine, we started giving Kaiden Native Remedies' Epi-Still and Triple Complex Nerve Tonic. The nerve tonic made him happier, no doubt about that. Epi-Still significantly reduced, but not eliminated his seizures. It reduced them down to an average of 4 - 10 single spasms per day over the course of 3 months and he didn't cry nearly as much when having a seizure.
The more research I did into seizures and the nervous system, I decided to try giving Kaiden calcium supplements to help support the nervous system along with the Native Remedies supplements. The calcium supplement also contained vitamin D3, magnesium, and vitamin K. This was about a week before his first birthday. Overnight, I noticed Kaiden was more alert and active and loud! This is where I began looking into Targeted Nutrition Intervention. I hadn't gotten into it previously as the reports I read said the Down's children would begin reaching milestones reported by happy parents . . . but that they also typically reached them at the same time as those not taking the supplements. The idea behind it is that Down's individuals do not process nutrients correctly/as efficiently as the non-Down's population does and that they need extra nutrients to compensate. It's not about mega doses, but finding the right dosage for the individual. Since I saw results overnight with just a calcium supplement, I wanted to try it all.
Because Kaiden was sensitive to certain foods, I researched as much as I possibly could and began slowly adding supplements to his routine rather than just buying a pre-made blend. My goal was to get him to the point we could go with a premade blend but I had to try all those ingredients separately. And I'm glad I did, found somethings he didn't tolerate well. I will note, that the over-the-counter supplements, even in infant doses, gave Kaiden really loose stools. Which, of course, he would let loose while bouncing in his excersaucer. Yay, poop down his legs and up his back!! Good thing it was winter and it was all contained in his sleeper! YUCK! And it didn't matter if we used cloth or disposables . . . there wasn't a diaper in the world that could hold it in. Maybe a garbage bag and duct tape, I don't know!
Eventually I moved Kaiden to a whole foods vitamin by my favorite company, Dr. Christopher's. Along with their Kid-E-Mins, Kaiden also gets their Kid-E-Calc (calcium) and when we ran out of the Native Remedies supplements, I gave him Dr. Christopher's Ear & Nerve Tonic and Kid-E-Trac (emotional wellbeing, helps the child to focus). He also gets choline bitratrate, TMG, tryptophan, and grapeseed extract. I don't really think the tryptophan does anything for him, so when we run out, I do not plan to continue that one.
The Kid-E-Mins & Kid-E-Calc made one HUGE difference noticeable within 48 hours . . . nice, normal SOLID poop! Soooooo much better!!!! The Ear & Nerve tonic . . . overnight Kaiden's balance improved and I could actually carry him around with one arm without him falling backward. What a relief!
Back to the seizures . . . I didn't notice a reduction in the amount of seizures, but rather a decrease in their severity. He was still having on average 4 - 10 single spasms per day but most of them were pretty mild. He would have a few though, that would lock him up for 2 - 3 seconds. Completely locked up, couldn't breathe . . . sometimes it would take a minute or two for Kaiden to snap out of it once it was over.
And back my belief that diet has everything to do with his seizures, no matter what the neurologist said . . . as far as the carrots & sweet potatoes went, it's not like I gave them to him once and noted activity . . . I tried on 3 separate occasions with the same, repeated result. A day and a half later each time, his seizure activity spiked. So I stopped giving him those foods. By now, Kaiden was pretty well on table foods. I had thought that he was spiking after eating spaghetti and tacos, but wasn't sure as the activity didn't seem much worse than average. One weekend, I ate an eggplant dish from Buca. It was super tasty, and a HUGE dish - took me 3 days to eat it all. And boy, did Kaiden's seizure activity spike. It was really bad, poor little guy. Once I finally figured out it was the eggplant doing it (I had never eaten eggplant before), I pumped & dumped all my fresh milk and gave Kaiden frozen breastmilk for a few days, and his seizure activity went back down as expected. Several months later, in late April 2010, I tried some fresh green peppers since Kaiden was doing well on table foods. (Kaiden had been sensitive to when I ate fresh green peppers all along, giving him a rash and made him painfully gassy. I stopped eating those long before the seizures started.) I ate a tiny amount on a Subway sandwich and didn't notice any significant difference in Kaiden, so a few days later I had a good helping of them at Chipotle. A day and a half later . . . on Mother's Day no less . . . Kaiden's seizure activity spiked like it had done with the eggplant. He spent Mother's Day having seizures and screaming. For several days after that I would literally walk around the house saying, "what the F do eggplant and green peppers have in common that Kaiden reacts so badly to them?" Then finally, I got the bright idea to type in Google, "green pepper eggplant have in common". And the connection came up . . . they are both members of the nightshade (solanaceae) family. As are tomatoes (remember spaghetti & tacos?), potatoes, all peppers - sweet and hot, paprika, ground cherries, and lots more foods I wasn't familiar with. It was like the lightbulb finally clicked on.
Being into natural remedies, I am familiar with some of the properties of deadly nightshade but never thought about foods of the nightshade family. I was using tomatoes, paprika, and chili peppers on a regular basis. Nightshade foods cause the body to excrete calcium, and calcium is essential to the nervous system. It is one of those plants that is used to treat in tiny doses, but in high doses causes the problem you are trying to treat. Eating nightshade foods = high doses.
I immediately eliminated nightshade foods from my & Kaiden's diets, and within a few days, saw a significant reduction in his seizure activity. Then I ate a grilled chicken sandwich from Dairy Queen (contained mayo, which has paprika in it, and a slice of tomato). A day and a half later, Kaiden's seizure activity spiked. When it went back down, I ate a hamburger with mustard (contains paprika) and as expected, a day and a half later his seizure activity spiked again. That was enough of a "lab test" for me, and I completely eliminated nightshade foods for both of us. Kaiden's seizure activity dropped again, and on May 28th 2010, he had his last seizure.
Within one week of being seizure free, Kaiden has become so much more alert, so much happier . . . he used to smile all the time before the seizures started and during the time he had them, a smile was a pretty rare thing. He smiles and giggles all the time now, it brings me to tears! Also within that first week, Kaiden began standing, supporting himself by holding onto something rather than relying on us to hold him upright. He began signing back his first "word", the sign for "eat".
And the neurologist said diet had nothing to do with it.
Subscribe to:
Posts (Atom)