Maybe . . . just maybe carotatoxin is why carrots gave Kaiden seizures. I'm still not exactly sure yet - but carotatoxin is a fatty alcohol found in carrots, celery, parsley, and panax ginseng. In high amounts (or in those sensitive to it??) it can cause neurotoxical problems, including muscle tremors.
Celery and parsley do not affect Kaiden, but we tried giving him panax ginseng in a VERY tiny amount a couple weeks ago to see if it would help his circulation, and therefore help the lymphedema in his fingers. Within 36 hours, Kaiden stopped sleeping at night . . . way too much stimulation for him! I gave it a full week to see if it would help his fingers . . . it didn't, so took him off of it. Within 36 hours - now, I don't know if this was because I took him off of it, or if it was a buildup of having taken it for a week - but he got very, very twitchy, seemed uncomfortable, was rather cranky, and was banging his head rhythmically, every 3 seconds. When I saw that the head banging was rhythmic, I was immediately concerned that it could be benign myoclonic seizure activity again - only he didn't seem to be upset by the activity like he was before. Thankfully it only lasted 1 day.
This renewed my research into why carrots and sweet potatoes gave him seizures. I understand why nightshades did, but not why carrots and sweet potatoes did. I'd been thinking it was the high amount of beta carotene, as that's all I could really find in common for the two, and I knew that carrots did affect some epileptic individuals.
Interestingly enough, ancient Chinese wisdom says not to eat carrots after consuming ginseng, for the carrots will undo the good of the ginseng. I wonder if maybe it would be too high of a dosage of carotatoxin with the two together.
Now, carotatoxin is not necessarily a bad thing! It's purported to be anti-cancer and it would take eating a lot of carrots to affect most humans negatively.
One interesting thing of note - carrot juice doesn't seem to affect Kaiden, just actual pieces of carrot. Cooking carrots (which is the only way he ever got carrot pieces, was cooked) apparently concentrates the amount of carotatoxin by up to 25%. Some great info on carrots can be found here: http://www.carrotmuseum.co.uk/falcarinol.html
I still haven't found anything on sweet potatoes, but I'll keep looking!
Speaking of the lymphedema . . . it's almost gone; his fingers are almost back to normal. Being as it's happened twice now at the same time of year, at exactly the same time of year his circulation gets bad . . . I also noticed that even though we keep our house at a constant temperature and kept him indoors, cold fronts moving in seemed to make it worse! Maybe part of it has to do with not just the weather but the natural forces affecting the weather. Food for thought.
Friday, April 5, 2013
Tuesday, March 19, 2013
Communication
Kaiden's non-verbal. Has been since Dec 18th, 2009. At that time, he had 3 words: apple, asshole (oops!) and Mama; Mama being the only word said with intention. Kaiden jargons a lot, and has for several years now, but while conscious for the most part has lost the ability to form words, thanks to the seizures. He occasionally says "mum mum mum" for Mama, but it's pretty rare. He can say "hi" when greeting people, but always drops off the H, so it is only the "i" sound. He said "jet" upon being shown a flashcard of a jet a few times, but that was quite awhile ago already. Anything you ask him to say now, comes out sounding like "yeh" or "eh".
He can, however, speak clearly and coherently in his sleep. I don't remember the earlier words, as I assumed I was dreaming . . . until the night I was awake and heard him say "too hot" as he kicked off his blankets. Other words I remember hearing are "sister" (no idea on that one!) and "too early" when it was around 5am. He has the sweetest little boy voice . . . I long for the days when he'll be able to talk again. Many of his tantrums are driven by frustrations with communication.
Kaiden understands English perfectly, can follow directions, can make requests, can tell me things . . . but in order for me to understand him, I had to learn his language. Kaiden does not sign, either, and not for lack of me trying to teach him! Same with feeding, he just will not use his hands for anything other than what he wants to do. He does not imitate, yet learns from watching us. I cannot get him to imitate anything I'm doing when I ask him to do it, but there are so many things he's learned to do by watching us. Kaiden does not point, either. He will touch what he wants rather than point to it.
Right now we're working with the PECS (picture exchange communication system). He gets that, no problem. Last week the school gave me some of the same pictures they use with him. Today I showed him the pictures and asked whether he wanted grapes or blueberries for a snack. He got mad and wouldn't choose either. But when I expanded the choices to include a banana, the banana was immediately and clearly chosen.
Here's something that bugs the hell out of me. After chatting with a friend online who is a Speech and Language Pathologist, both of us feel that Kaiden has apraxia. After reading up on it, that might just be the problem with him not using his hands. He can certainly use his hands correctly, but only for some things. So, at school conferences last Friday I brought up the subject of apraxia and that I would like speech therapy for such implemented immediately, helping him learn to form words. I knew he was receiving 15 minutes of speech therapy once per week in the school setting for PECS; what I did not know was that Kaiden is "often only observed in the classroom setting" rather than direct one-on-one therapy. I was told by the speech therapist that since speech generally comes after gross motor skills (which I knew), basically not to worry about it until his gross motor skills improve. And . . . that she does not feel Kaiden has the cognitive skills yet to do that type of speech therapy. REALLY??? Kaiden's 4. Granted his motor skills aren't great, but that doesn't mean he can't think or learn! I said, well, then we'll be doing it at home then, because Kaiden has the cognitive skills, he wants to communicate, he can communicate in his own way, but if you can't understand his language, you can't understand HIM. I had to remind her not to look at this as Down Syndrome, but as a seizure injury, which she had completely forgotten . . . and was suprised when I told her (which I KNOW I've told her before!!!) that he can speak clearly in his sleep. After repeating my request for more therapy and stating my case on his cognitive skills, she reluctantly agreed to up his therapy sessions to two 15 minute sessions per week. She told me she felt he wasn't ready, that therapy for apraxia wouldn't do any good. Now, with Kaiden, he has his routines. He needs a long time to incorporate new stuff into his routines. I said, best to start now, so he gets it incorporated into his routine. NOW is the perfect time to start since he's learning and soaking up so much right now. He might not respond physically yet, he might fight you, but he's learning all the same. Why wait?
He can, however, speak clearly and coherently in his sleep. I don't remember the earlier words, as I assumed I was dreaming . . . until the night I was awake and heard him say "too hot" as he kicked off his blankets. Other words I remember hearing are "sister" (no idea on that one!) and "too early" when it was around 5am. He has the sweetest little boy voice . . . I long for the days when he'll be able to talk again. Many of his tantrums are driven by frustrations with communication.
Kaiden understands English perfectly, can follow directions, can make requests, can tell me things . . . but in order for me to understand him, I had to learn his language. Kaiden does not sign, either, and not for lack of me trying to teach him! Same with feeding, he just will not use his hands for anything other than what he wants to do. He does not imitate, yet learns from watching us. I cannot get him to imitate anything I'm doing when I ask him to do it, but there are so many things he's learned to do by watching us. Kaiden does not point, either. He will touch what he wants rather than point to it.
Right now we're working with the PECS (picture exchange communication system). He gets that, no problem. Last week the school gave me some of the same pictures they use with him. Today I showed him the pictures and asked whether he wanted grapes or blueberries for a snack. He got mad and wouldn't choose either. But when I expanded the choices to include a banana, the banana was immediately and clearly chosen.
Here's something that bugs the hell out of me. After chatting with a friend online who is a Speech and Language Pathologist, both of us feel that Kaiden has apraxia. After reading up on it, that might just be the problem with him not using his hands. He can certainly use his hands correctly, but only for some things. So, at school conferences last Friday I brought up the subject of apraxia and that I would like speech therapy for such implemented immediately, helping him learn to form words. I knew he was receiving 15 minutes of speech therapy once per week in the school setting for PECS; what I did not know was that Kaiden is "often only observed in the classroom setting" rather than direct one-on-one therapy. I was told by the speech therapist that since speech generally comes after gross motor skills (which I knew), basically not to worry about it until his gross motor skills improve. And . . . that she does not feel Kaiden has the cognitive skills yet to do that type of speech therapy. REALLY??? Kaiden's 4. Granted his motor skills aren't great, but that doesn't mean he can't think or learn! I said, well, then we'll be doing it at home then, because Kaiden has the cognitive skills, he wants to communicate, he can communicate in his own way, but if you can't understand his language, you can't understand HIM. I had to remind her not to look at this as Down Syndrome, but as a seizure injury, which she had completely forgotten . . . and was suprised when I told her (which I KNOW I've told her before!!!) that he can speak clearly in his sleep. After repeating my request for more therapy and stating my case on his cognitive skills, she reluctantly agreed to up his therapy sessions to two 15 minute sessions per week. She told me she felt he wasn't ready, that therapy for apraxia wouldn't do any good. Now, with Kaiden, he has his routines. He needs a long time to incorporate new stuff into his routines. I said, best to start now, so he gets it incorporated into his routine. NOW is the perfect time to start since he's learning and soaking up so much right now. He might not respond physically yet, he might fight you, but he's learning all the same. Why wait?
Saturday, March 2, 2013
Finger Feeding!!
FINALLY!!!
Kaiden has never, EVER finger fed in all of his 4+ years, until Monday. We've tried it time and time again, hand over hand, and it's always been a tantrum-filled struggle, but we kept at it. It's never been a matter of motor skills - he can easily bring his toys and hands to and into his mouth. With food, he'd pick it up, squish/explore it, drop it on the floor, throw it, feed it to the dog, feed it to me . . .but would NEVER feed himself. Because, apparently, food doesn't go into *your own* mouth with *your own* hands . . .
We've gotten tons and tons of advice from helpful people - friends, experienced moms, therapists, doctors . . . and the kid just would not do it. Uh-uh, no way, not gonna happen. While I appreciated the advice, none of it worked. Because again, this was not a matter of learning the skill or about the sensory part of touching food. He just plain-out refused to do it.
We've been doing lots of me finger feeding him lately, and he opens his mouth like a little baby bird. Sunday, I did hand over hand with him with grapes, and he didn't argue too bad. But it was ALL hand over hand. Then Monday, I did hand over hand for the first grape, and was going to continue to assist, but the second grape . . . all by himself. And he ate the rest of the whole damn bag all by himself! And has continued finger feeding since. He prefers foods that he can easily pick up - grapes, blueberries, raspberries . . . he didn't like cut up pieces of banana, just couldn't get a grip on the slippery little buggers.
Lest you think our feeding issues are over . . . ha, ha, ha . . . if the food is presented in a bowl or on a plate, there BETTER be a spoon involved (which is still hand over hand to scoop the food - again, not a matter of can't, but a matter of WON'T). He will not pick up the food off of dishes with his fingers - well, let me clarify that. He will not pick up HIS food off of dishes. He has no problem picking up MY food off of MY plate and putting it onto his. He will only finger feed off the table or a napkin. Eh, well, baby steps. At least snack time is easier!
Kaiden has never, EVER finger fed in all of his 4+ years, until Monday. We've tried it time and time again, hand over hand, and it's always been a tantrum-filled struggle, but we kept at it. It's never been a matter of motor skills - he can easily bring his toys and hands to and into his mouth. With food, he'd pick it up, squish/explore it, drop it on the floor, throw it, feed it to the dog, feed it to me . . .but would NEVER feed himself. Because, apparently, food doesn't go into *your own* mouth with *your own* hands . . .
We've gotten tons and tons of advice from helpful people - friends, experienced moms, therapists, doctors . . . and the kid just would not do it. Uh-uh, no way, not gonna happen. While I appreciated the advice, none of it worked. Because again, this was not a matter of learning the skill or about the sensory part of touching food. He just plain-out refused to do it.
We've been doing lots of me finger feeding him lately, and he opens his mouth like a little baby bird. Sunday, I did hand over hand with him with grapes, and he didn't argue too bad. But it was ALL hand over hand. Then Monday, I did hand over hand for the first grape, and was going to continue to assist, but the second grape . . . all by himself. And he ate the rest of the whole damn bag all by himself! And has continued finger feeding since. He prefers foods that he can easily pick up - grapes, blueberries, raspberries . . . he didn't like cut up pieces of banana, just couldn't get a grip on the slippery little buggers.
Lest you think our feeding issues are over . . . ha, ha, ha . . . if the food is presented in a bowl or on a plate, there BETTER be a spoon involved (which is still hand over hand to scoop the food - again, not a matter of can't, but a matter of WON'T). He will not pick up the food off of dishes with his fingers - well, let me clarify that. He will not pick up HIS food off of dishes. He has no problem picking up MY food off of MY plate and putting it onto his. He will only finger feed off the table or a napkin. Eh, well, baby steps. At least snack time is easier!
Friday, February 22, 2013
Lymphedema strikes again!
Okay, it really struck about a month ago, in the last half of January. About a week before his doctor's appointment. I let it go, because I wanted his osteopath to see it in progress, and to see if he had any other ideas on treating it than the way I know how to treat it: fruit only for a few days, slowly add back in veggies for a few days, then slowly add back in white (light protein) meats. He first developed lymphedema when he turned two, after being told by his then pediatrician to double his meat intake. Big mistake. Even bigger red flag when said pediatrician didn't seem one bit concerned that he had it; she was only concerned about the weight loss that came with treating it. Well, I treated it, got it taken care of, haven't seen it since - until right around his 4th birthday.
A few things of note:
Today, doing more research into lymphedema (primarily because I couldn't remember all I read 2 years ago), I came across mention that grapeseed extract is excellent for lymphedema because it helps bring down inflammation. Now, I know this kid's got big issues with inflammation. And I took him off grapeseed extract 2 months before the lymphedema came back. So, we started that back up tonight and will continue on with it. Too much starch, just like too much protein, also isn't good for lymphedema, so we'll be cutting back on that.
I also read on many websites that green tea is excellent, as is a juicing of celery, parsley, and spirulina. I went to the grocery store and picked up the parsley (have everything else already), green tea, and a Everyday Detox tea which promotes healthy liver function. Yes, I know it says not to use with children under the age of 12 - but, I feel comfortable with the ingredients, and it's not like he's going to get the adult dosage of 1 - 2 cups per day. If I can get him to take just a few sips per day, I'm good with that.
The osteopath had one other suggestion to detox him, a product called UltraClear. The kid's version is called UltraCare. So, I had them ship me some . . . and it turns out to be a rice-based "medical food" - basically formula. I called them back, asking for clarification on how this is supposed to help. Kaiden's liver enzymes came back a little high, meaning his kidneys are sluggish from the buildup of protein. Yes, I understand they like to use it when a child is on an elimination diet - but I am NOT giving him a rice (or soy, or dairy, or wheat, or corn) based formula for extra nutrition, when he's getting a crapton of nutrition already. Kaiden does NOT do well on over-the-counter vitamins. Just like he cannot tolerate bromelain. Been there, done that. All that is eliminated during this treatment is excess proteins and fats, because he has a buildup of protein and needs to flush it out! I have not eliminated his whole foods vitamins, amino acids, or other supplements. I feed him as often as he asks for food, sometimes 6x per day.
On top of it all, he came down with a cold yesterday afternoon, after attending preschool where I was informed that ALL the kids there were sick with a cold.
I've come to the conclusion that Kaiden must have what's called Primary Lymphedema, which is an incomplete or abnormal lymphatic system at birth. And apparently it's been noted to occasionally show up in children with Down Syndrome. But, man, you really gotta dig to find the info.
An anonymous quote I came across today seems appropriate: "Intelligence: Not because you think you know everything without questioning, but rather because you question everything you think you know."
A few things of note:
- in January and February every year, presumably from the Minnesota cold, Kaiden's circulation in his extremeties is terrible. His fingers and toes turn bluish purple and need some massage to keep the circulation going. Squeeze them a few times real quick, they go back to normal color. Doesn't seem to matter how warm I dress him.
- Last winter, when Kaiden turned 3, the winter was really, really mild. Warmer temps all winter long. No issues with lymphedema, and the circulation issue wasn't too bad.
- This winter has been cold again (like it should be!). When the lymphedema came back this time, it was right after a cold snap with sub zero temps during which Kaiden had pulled off his mitten while I carried him into preschool.
- 2 months prior, in early December 2012, I had removed the TMG from Kaiden's supplements (see earlier posts). Also at the same time, I eliminated grapeseed extract, as I couldn't tell if it was making a difference or not.
- Since we started amino acid therapy last summer, Kaiden upped himself to 4 meals per day, and therefore was getting more meat, but still portioned out to be not more than 1/3 of any meal, and not any with breakfast - staying well within the recommended 20 - 30% of daily intake. We still avoided beef and pork for the most part.
- This is the first winter Kaiden hasn't had any breastmilk. Not sure if that plays a role or not - inflammation, type of protein and fats.
- We were doing a lot more starches, in hopes that it would bulk up his runny poop. The more parsnips he ate, the firmer his runny poop was but it wasn't until we started the new bromelain-free digestive enzyme that his poop returned to normal.
Today, doing more research into lymphedema (primarily because I couldn't remember all I read 2 years ago), I came across mention that grapeseed extract is excellent for lymphedema because it helps bring down inflammation. Now, I know this kid's got big issues with inflammation. And I took him off grapeseed extract 2 months before the lymphedema came back. So, we started that back up tonight and will continue on with it. Too much starch, just like too much protein, also isn't good for lymphedema, so we'll be cutting back on that.
I also read on many websites that green tea is excellent, as is a juicing of celery, parsley, and spirulina. I went to the grocery store and picked up the parsley (have everything else already), green tea, and a Everyday Detox tea which promotes healthy liver function. Yes, I know it says not to use with children under the age of 12 - but, I feel comfortable with the ingredients, and it's not like he's going to get the adult dosage of 1 - 2 cups per day. If I can get him to take just a few sips per day, I'm good with that.
The osteopath had one other suggestion to detox him, a product called UltraClear. The kid's version is called UltraCare. So, I had them ship me some . . . and it turns out to be a rice-based "medical food" - basically formula. I called them back, asking for clarification on how this is supposed to help. Kaiden's liver enzymes came back a little high, meaning his kidneys are sluggish from the buildup of protein. Yes, I understand they like to use it when a child is on an elimination diet - but I am NOT giving him a rice (or soy, or dairy, or wheat, or corn) based formula for extra nutrition, when he's getting a crapton of nutrition already. Kaiden does NOT do well on over-the-counter vitamins. Just like he cannot tolerate bromelain. Been there, done that. All that is eliminated during this treatment is excess proteins and fats, because he has a buildup of protein and needs to flush it out! I have not eliminated his whole foods vitamins, amino acids, or other supplements. I feed him as often as he asks for food, sometimes 6x per day.
On top of it all, he came down with a cold yesterday afternoon, after attending preschool where I was informed that ALL the kids there were sick with a cold.
I've come to the conclusion that Kaiden must have what's called Primary Lymphedema, which is an incomplete or abnormal lymphatic system at birth. And apparently it's been noted to occasionally show up in children with Down Syndrome. But, man, you really gotta dig to find the info.
An anonymous quote I came across today seems appropriate: "Intelligence: Not because you think you know everything without questioning, but rather because you question everything you think you know."
Monday, February 11, 2013
Well, now, this is interesting!
I came across an article tonight: Miracle milk helps heal brain-injured formula-fed baby which tells the story of a brain injured 11 month old girl, given donor breast milk. It ends the article with a letter written by the girl's grand-aunt, who is a lactation consultant. In it she wrote some information about taurine, which is one of the amino acids that Kaiden is on.
"Research has shown that feeding medically challenged babies this nutrient-rich milk eases digestion, promotes growth and development, and helps to prevent infection. Breastmilk (your mom-made wonderfood) provides important vitamins and minerals for children including the brain-cell builder taurine. While taurine is not an essential amino acid, its high concentration in breast milk does seem to indicate a need that cannot be met by the child’s own body. How much taurine is in formula or cow’s milk? None! Yet extremely high levels of this “smart” substance are found in the brains of children, indicating that it is an important aid to brain growth. Ninety-six percent of brain growth occurs by the age of five years."
When I read that, up popped a flag in my brain - HEY LADY, PAY ATTENTION!! I thought about it for awhile . . . when Kaiden's seizures first stopped, he was 16 months old and still drinking quite a bit of breastmilk. When his seizures stopped, his development FLEW. He gained 4 - 6 months of development in 3 short weeks; after about 6 weeks, had gained 9 - 12 months of development. After that he still gained but at a slower pace. He was gradually drinking less and less breastmilk, and about 6 months later when he turned two, he didn't really want it anymore since we had introduced juice. He still drank some, but only because I mixed with with juice. This was the reason I stopped short of my goal of exclusively pumping until he was 3. He wanted juice a lot more than he wanted my milk. I knew I had enough in the big chest freezer, so I let the girls dry up. Kaiden continued to get breastmilk, little amounts that it was, until he was 3 1/2; by then it was maybe 4 oz per week, and we skipped a few weeks here and there. His development was slowing again, and I was concerned. Having seen what he was capable of, I could not figure out why he was slowing down. Allopathic medicine's answer was of course, that it's because he has Down Syndrome. Which, of course, I never listen to because I've seen how fast this kid can learn!
We started Kaiden on amino acid therapy in August 2012, starting with taurine, all because I'd read the book Carly's Voice and his osteopath and I got to talking about dietary therapies for autistic kids. We saw his development pick up the pace again. We added in GABA, and he was very unhappy and angry, and stopped what little bit of sleeping he was doing at night. We took him off the GABA and taurine and started theanine. The sleeping improved a little, but I felt his development had slowed again and so I wanted to try the taurine again. A little messing around with his supplements and their doses, figuring out he didn't need the TMG, led to him now being on theanine and taurine and his development is back to a good pace and as a bonus, he is sleeping thru the night!! At preschool they have told me repeatedly they just can't get over how far he has come in the last 2 months!
What did we do different 2 months ago? We put him back on taurine. And now, NOW I find out that's what he was getting from me in the form of breastmilk, back when he was drinking so much of it and his development was flying? Smack myself in the forehead! Well NO WONDER MOM!!! Not that Kaiden, at that age, could have formulated those thoughts and told me exactly what supplements he needed and at what dosages . . .but dang I sure wish he could have, would have saved a lot of time and questions! And he'd have gotten that much farther that much sooner. Well, this is what this blog is here for: to help other moms with kids with Down Syndrome, and kids with benign myoclonic seizures.
So, take it from me, a mom's who's been there and is still going down this road! You never know what you can accomplish unless you try - and that goes for your kids, too!
"Research has shown that feeding medically challenged babies this nutrient-rich milk eases digestion, promotes growth and development, and helps to prevent infection. Breastmilk (your mom-made wonderfood) provides important vitamins and minerals for children including the brain-cell builder taurine. While taurine is not an essential amino acid, its high concentration in breast milk does seem to indicate a need that cannot be met by the child’s own body. How much taurine is in formula or cow’s milk? None! Yet extremely high levels of this “smart” substance are found in the brains of children, indicating that it is an important aid to brain growth. Ninety-six percent of brain growth occurs by the age of five years."
When I read that, up popped a flag in my brain - HEY LADY, PAY ATTENTION!! I thought about it for awhile . . . when Kaiden's seizures first stopped, he was 16 months old and still drinking quite a bit of breastmilk. When his seizures stopped, his development FLEW. He gained 4 - 6 months of development in 3 short weeks; after about 6 weeks, had gained 9 - 12 months of development. After that he still gained but at a slower pace. He was gradually drinking less and less breastmilk, and about 6 months later when he turned two, he didn't really want it anymore since we had introduced juice. He still drank some, but only because I mixed with with juice. This was the reason I stopped short of my goal of exclusively pumping until he was 3. He wanted juice a lot more than he wanted my milk. I knew I had enough in the big chest freezer, so I let the girls dry up. Kaiden continued to get breastmilk, little amounts that it was, until he was 3 1/2; by then it was maybe 4 oz per week, and we skipped a few weeks here and there. His development was slowing again, and I was concerned. Having seen what he was capable of, I could not figure out why he was slowing down. Allopathic medicine's answer was of course, that it's because he has Down Syndrome. Which, of course, I never listen to because I've seen how fast this kid can learn!
We started Kaiden on amino acid therapy in August 2012, starting with taurine, all because I'd read the book Carly's Voice and his osteopath and I got to talking about dietary therapies for autistic kids. We saw his development pick up the pace again. We added in GABA, and he was very unhappy and angry, and stopped what little bit of sleeping he was doing at night. We took him off the GABA and taurine and started theanine. The sleeping improved a little, but I felt his development had slowed again and so I wanted to try the taurine again. A little messing around with his supplements and their doses, figuring out he didn't need the TMG, led to him now being on theanine and taurine and his development is back to a good pace and as a bonus, he is sleeping thru the night!! At preschool they have told me repeatedly they just can't get over how far he has come in the last 2 months!
What did we do different 2 months ago? We put him back on taurine. And now, NOW I find out that's what he was getting from me in the form of breastmilk, back when he was drinking so much of it and his development was flying? Smack myself in the forehead! Well NO WONDER MOM!!! Not that Kaiden, at that age, could have formulated those thoughts and told me exactly what supplements he needed and at what dosages . . .but dang I sure wish he could have, would have saved a lot of time and questions! And he'd have gotten that much farther that much sooner. Well, this is what this blog is here for: to help other moms with kids with Down Syndrome, and kids with benign myoclonic seizures.
So, take it from me, a mom's who's been there and is still going down this road! You never know what you can accomplish unless you try - and that goes for your kids, too!
Saturday, February 2, 2013
Poop - YAY!!
Yes, this one's about poop. What goes in must come out. And this kid eats A LOT. I mean in one day, sometimes in one meal, he eats more than most kids eat in a week. I've known for a long time that Kaiden's body doesn't digest food properly, which is part of the reason he eats so much. At our last doctor's visit, we finally found some bromelain-free digestive enzymes . . . and we are FINALLY back to solid poop! This excites me to no end!
Yes, I am excited by solid poop. Why? Well, Kaiden's 4 and is still in diapers. He knows when he needs a clean diaper and can tell me when he wants a diaper change, but he cannot yet tell me he needs to go. Well, he probably tries, but being non-verbal I'm sure I miss some cues. The great thing about cloth diapers is that the dirty ones smell less than dirty disposables. The less-than-solid poop he'd been having was pretty foul, even in cloth. This new solid stuff, I can hardly smell it. If I'm not right next to the kid when he does it, I have no idea that he's pooped until I go to check his diaper! And the best part . . . messy pooped on cloth diapers sometimes (okay, most of the time) require a diaper sprayer and that can get even more messy. Solid stuff just rolls right off. So much easier!
Solid poop also means that Kaiden eats less. Not a whole lot less, but less, because he's getting more out of what he eats. If he eats this much now, I don't even want to know how much he'll eat as a teenager. He'll probably skeletonize a few cows per week!
Weight update - in the last 3 months with the change in amino acid supplements (see last post) he has gained 0.2 pounds - not a whole lot, but it's at least something. I'm hoping he'll do even better now that his poop is so much better. Let me tell you how sick I am of people assuming I'm starving the poor child because he is so tiny. And of course they are full of unhealthy suggestions, none of which I will consider following because those suggestions are NOT healthy options. Stop the SAD, people. It's not good for you!
Yes, I am excited by solid poop. Why? Well, Kaiden's 4 and is still in diapers. He knows when he needs a clean diaper and can tell me when he wants a diaper change, but he cannot yet tell me he needs to go. Well, he probably tries, but being non-verbal I'm sure I miss some cues. The great thing about cloth diapers is that the dirty ones smell less than dirty disposables. The less-than-solid poop he'd been having was pretty foul, even in cloth. This new solid stuff, I can hardly smell it. If I'm not right next to the kid when he does it, I have no idea that he's pooped until I go to check his diaper! And the best part . . . messy pooped on cloth diapers sometimes (okay, most of the time) require a diaper sprayer and that can get even more messy. Solid stuff just rolls right off. So much easier!
Solid poop also means that Kaiden eats less. Not a whole lot less, but less, because he's getting more out of what he eats. If he eats this much now, I don't even want to know how much he'll eat as a teenager. He'll probably skeletonize a few cows per week!
Weight update - in the last 3 months with the change in amino acid supplements (see last post) he has gained 0.2 pounds - not a whole lot, but it's at least something. I'm hoping he'll do even better now that his poop is so much better. Let me tell you how sick I am of people assuming I'm starving the poor child because he is so tiny. And of course they are full of unhealthy suggestions, none of which I will consider following because those suggestions are NOT healthy options. Stop the SAD, people. It's not good for you!
Saturday, December 29, 2012
Our year is ending on a high note!
We're still figuring out what Kaiden needs as far as amino acids goes. As of the last post, we had suspended both the taurine and the GABA, and had him on theanine and were trying out digestive enzymes. Well, the digestive enzymes, even in a teeny tiny dose, had the same results as the first time we tried bromelaine = pretty darn nasty diarrhea. That's been suspended for now. The taurine had really helped with gut inflammation and made the skin on his arms and legs much smoother, less bumpy, so I wanted to reintroduce it at some point to see if we had the same results. A few weeks ago I got lazy with the rest of his supplement mix (the TMG, citicholine, grapeseed extract, and CoQ10) and Kaiden didn't get it for a few days. Suprisingly, he started sleeping better! His blood test last year showed he definitely needed to remain on both the choline and CoQ10 supplments, so those two I slowly reintroduced. He continued to sleep better, so while leaving out the TMG (which I was beginning to suspect as the insomnia culprit) with the doctor's approval I reintroduced the taurine. And not only did his skin almost immediately improve, he started - for the first time since the seizures stopped 2 1/2 years ago - sleeping thru the night! He still needs a fairly strict bedtime in order for this to happen, although his window of opportunity has now expanded to between 8 - 8:30pm. And even better, with the combination of the theanine and taurine, once again he is slowly putting on muscle tone. It's most noticeable on his skinny little chicken-wing upper arms, they are now almost the same circumference as his forearms. He had the Pop-eye look going on there for a long time! Best of all, he is now walking 95% of the time, both at preschool and at home! His gait is still awkward, but he's doing it!
Kaiden is a funny kid. He may be non-verbal and refuse to sign, but he finds ways to show me what he wants, what he's interested in. In the last month he began playing with the spelling functions of several of his toys, so we reintroduced his flashcards and he is totally loving it! He has his favorite cards, and one of them, "jet", he smiles at and has said either "jeh" or "et" on at least three separate occasions without prompting. He hands me the items he wants help with or wants to interact with me/with him. He knows exactly what I say to him and can certainly follow directions, but still has a difficult time with motor planning skills, getting his body to follow what his head tells him to do. He still does not self feed, finger feed, point, or do other simple things with his hands like wave "hi", but he can "high five", and he can pick up food with one hand and place it in the spoon in his other hand, and feed himself that way. He can pick up single cards out of a pile and place them into another pile. He can find/use the on/off buttons on any toy right away, no matter what they look like (and especially if they say "on/off"). I keep saying, I'm pretty sure he can read. Next up, simple math.
Now for some really exciting news on my end . . . the cookbook I've been working on since we started this journey is going to be printed early next year! A friend (who I got to know because both our sons had the same type of seizure) got me in touch with a printer who wants to help me realize this dream by printing my first 100 copies for free! I am beyond blessed here!!
Kaiden is a funny kid. He may be non-verbal and refuse to sign, but he finds ways to show me what he wants, what he's interested in. In the last month he began playing with the spelling functions of several of his toys, so we reintroduced his flashcards and he is totally loving it! He has his favorite cards, and one of them, "jet", he smiles at and has said either "jeh" or "et" on at least three separate occasions without prompting. He hands me the items he wants help with or wants to interact with me/with him. He knows exactly what I say to him and can certainly follow directions, but still has a difficult time with motor planning skills, getting his body to follow what his head tells him to do. He still does not self feed, finger feed, point, or do other simple things with his hands like wave "hi", but he can "high five", and he can pick up food with one hand and place it in the spoon in his other hand, and feed himself that way. He can pick up single cards out of a pile and place them into another pile. He can find/use the on/off buttons on any toy right away, no matter what they look like (and especially if they say "on/off"). I keep saying, I'm pretty sure he can read. Next up, simple math.
Now for some really exciting news on my end . . . the cookbook I've been working on since we started this journey is going to be printed early next year! A friend (who I got to know because both our sons had the same type of seizure) got me in touch with a printer who wants to help me realize this dream by printing my first 100 copies for free! I am beyond blessed here!!
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