Kaiden's current supplement list

It's been awhile since I've updated Kaiden's full supplement list here on the blog.  Keep in mind, this is what we're doing right now at the time of this writing - we're in the midst of some testing so things may change.

Kaiden is still getting:
Powdered kelp once every 8 days or so
Dr. Christopher's Kid-E-Mins (plant based)
Dr. Christopher's Kid-E-Calc (plant based)
Dr. Christopher's Kid-E-Trac (plant based)
Vitamin D3
CoQ10 (ubiquinone)
Citicholine
Taurine - recently reduced his dosage based on bloodwork, seeing if we still get the same results
L-theanine
Digestive enzymes - bromelain free

We are almost out of the ubiquinone, and the ubiquinol version of CoQ10 is supposed to be more effective.  To be honest, I've never seen any improvement with the ubiquinone, so we'll have to try the ubiquinol - but it's expensive!!

We recently did an amino acid panel, a fatty acid panel, and are currently awaiting results from the latest GI panel.   The fatty acids came back all good, but with the recommendation to try curcumin for metabolic inflammation.  Still researching what kind I want to try with him - most people recommend Nutrivene's Longvida curcumin because it's been shown to cross the blood-brain barrier, but there's several companies making bio-curcumin now, so there's lots to choose from. While turmeric isn't supposed to be quite as effective, I used to give it to our senior rottie, Carl, and it did wonders for his arthritis.  I can always try that in the meantime with Kaiden and see if we have any results. 

The amino acid panel showed Kaiden was a little high in taurine, so we reduced his dosage for now.  He showed low (near the bottom of acceptable range, but not below) in l-tyrosine, glycine, and threonine.  His osetopath recommended to giving him glysom and l-tyrosine. 

Right  now I'm waiting for the GI results to come in and to see if we need to run another CBC before making any additional changes.

Our feature in Albert Lea Magazine!!

Featured in 2013 Holiday issue of Albert Lea Magazine:

Albert Lea Magazine (see page 40!)

 

credit: Albert Lea Magazine

So excited about this!!  A reporter from the Albert Lea Tribune came over and interviewed me about Kaiden, his story, and my cookbook (with Kaiden's story in it): Cavemom's Cooking.  They featured our story in their magazine, Albert Lea Magazine, the Holiday 2013 issue!!  We're on page 40. :)

Treating immune mediated hemolytic anemia naturally

This post isn't about Kaiden, it's about our Rottweiler, Lola.  In April of this year, Lola went pale on us, dropped weight, and her breathing changed from deep to shallow.  I wasn't exactly sure what was all going on, I'd come across a few things, and the vet's blood tests confirmed immune mediated hemolytic anemia.

So what caused it?  I'm not 100% sure.  Lola has been raw fed for 3 1/2 years.  It can be caused by too much blood loss - from an accident, fleas, but even vaccines are blamed.  Lola never had an accident, but she did get fleas from one trip to Missouri a couple years ago.  It could have been the supermarket chickens, too, for all I know.  What if those chickens were the ones being fed arsenic laced food (it bursts the capillaries, making the meat more pink, and thus is supposedly more appealing)?  I suspect the chicken as being the main cause, but I'm just not sure.  Lots of people feed their raw fed dogs a diet of chicken, and don't have any issues.

Anyway, I chose to treat her holistically rather than put her on a corticosteroid, which prevents the release of substances in the body that cause inflammation, and suppress the immune system.  Kaiden was severely anemic at his 6 month well visit and I had better luck with holistic treatments than over the counter iron supplements.  With my own knowledge base and experiences in holistic care, I felt 1000% confident in treating her (and I still do!).

This post isn't intended for anyone to refuse their vet's care.  If you choose to treat how I did, that's all on you. ;-)  I just want to share what I did, so you can make your own informed decision should you find yourself in the same situation.

The following is what I gave to our vet's office, as they wanted a copy of it seeing how well Lola recovered.

Treating Immune Mediated Hemolytic Anemia Naturally

 

Amounts for Lola, a 70lb rottweiler

 

·         24 oz (12 oz twice per day) raw food – raw meat, raw bones, raw organs – beef: meat, tripe, liver; pork: meat, bones, brains, liver; deer liver

 

·         1/4 c liver detox tea, 3x per day – Lola likes the flavor of the Yogi brand, but there are several brands that make liver detox teas. You can get the tea at HyVee and Walmart.

 

·         1 Tbsp Beef blood, 3x per day. Sourced from Geneva Meats.

 

·         1/64 tsp (drop) powdered kelp, 3x per day.  I already had this on hand, but you can get it online or at Nature Valley Foods in Burnsville.

 

·         Slippery elm bark powder, 2x per day.  Sourced from Valley Natural Foods in Burnsville. 

 

·         Lightly cooked vegetables, 1x per day:

1.       Bring to boil in a little water, let steep a little, 1 – 3 minutes

2.       1 fresh leaf kale, chopped

3.       1 fresh stalk oregano, chopped

4.       1 fresh stalk sage, chopped

5.       1 fresh stalk parsley, chopped (I prefer curly parsley for this application)

6.       1 pinch dried red clover leaves/flowers (or 1 stalk fresh), chopped (MOST IMPORTANT!!) (also sourced from Valley Natural Foods in Burnsville)

7.       Sprinkle of sea salt – Real Salt brand (contains 60+ trace minerals) (sourced at Wintergreen Natural Foods; Hyvee also carries it)

Other support, just because it’s Lola and I wanted to do it:

Probiotics with breakfast

Digestive enzymes with each full meal

Hawthorne to support her heart (she has a heart murmur) 3x per day

 

DAILY MEALS

Breakfast:

12 oz raw food

1/4 c liver detox tea

1 Tbsp beef blood

1/64 tsp kelp

Slippery elm bark

Probiotics

Digestive enzymes

Hawthorne

 

Supper:

12 oz raw food

Lightly cooked vegetables

1/4 c liver detox tea

1 Tbsp beef blood

1/64 tsp kelp

Slippery elm bark

Probiotics

Digestive enzymes

Hawthorne

 

Bedtime:

1/4 c liver detox tea

1 Tbsp beef blood

 1 1/2 Tbsp pork brains, mashed

Hawthorne

 

NOTES:

I noticed that raw chicken aggravated the issue, even after the healing process began. It is my opinion that the chicken is most likely what caused the situation in the first place as that is what she was being fed previously.

 

Red clover is an important part of healing.  It thins, strengthens, and purifies the blood.  I feel it’s necessary and do not recommend skipping it.  I feel parsley is very important too; it is good for anemia.  Kelp was to quickly add iron to her diet, as was the beef blood.  Lola did not like the flavor of blood, so I mixed it in pork brains and her liver detox tea.

 

You have to be careful with dosages of kelp, as it can affect the thyroid.  After 2 – 3 weeks, I began lessening the dosage to once per week for a few more weeks, then stopped altogether. Kelp should only be used for the short term.

 

After 2 months of treatment, I stopped the kelp, slippery elm, beef blood, probiotics, digestive enzymes, as I felt they were no longer necessary. 

 

Between 2 – 4 months, I continued the leafy greens with red clover and detox tea at an average of once per week and will continuing that at least once every 2 weeks.  I will be giving her that for several more months at least.

 

Between the 3 – 4 month mark Lola’s coat was back to shiny, she began putting weight back on, and her breathing normalized (she is normally a slow deep breather when asleep, and went to fast shallow breathing, which was one flag that something was wrong).

 

I noticed it was right about the 4 month mark that Lola seemed to be back to 100%. Her gums went from pink-pink to red- pink, and her weight is back to normal.

 

August already!

Time flies!

Since I know you all want a Kaiden update:

• The amino acids and new digestive enzymes are continuing to do their job - he's now up to 26.5lbs, an average gain of 1lb per month.  It's nice seeing him fill out a bit!  I get so tired of people saying he's too skinny when it's a muscle tone issue, not a fat issue.  He eats as much as an adult does in a day (sometimes more!) - you'd think he'd be HUGE, but he's not. He just has very low muscle tone.  Strong, though . . . dang he can put up a fight when he doesn't want to do something I want him to do . . .

• He's now 4 1/2 and NAUGHTY!!!  OMG there are days . . . he is so mischievous . . . he does something naughty then quickly looks to see if I'm looking, and if I am . . . he laughs!  We've tried a variety of strategies to help him learn to behave better . . . let me tell you that 1 minute per year of age for time-out does NOT work for this kid.

• Kaiden had something that mimics the mumps a few weeks ago . . . not sure what it was . . . same symptoms, but his bloodwork came back negative.  But since then . . . it's like another switch has been flipped cognitively.  I know he understands everything we say but now his reactions are very quick.  Even for things he has to wait for, like telling him he has to wait for xx until yy.  When yy happens, he's RIGHT there, expecting xx, like right now, Mom!!

• I keep saying he displays many autistic tendencies, so he's finally getting evaluated at school for an educational diagnosis this fall.  Hopefully that will open more doors with therapy, as most look at him and only want to see Down Syndrome, and don't bother to look any further.  I demanded speech therapy (via the school therapist) for apraxia, and that will start this fall.  That whole situation still pisses me off.

• Interestingly enough . . . 5 hr energy drinks contain some of the amino acids he needs - as I learned when I forgot his supplements for our last cabin trip!  I was able to source some l-theanine and some bromelain-free digestive enzymes, but not the rest.  5 hr energy to the rescue!  It has taurine, citicholine, and some other amino acids as well as caffeine.  We were going to start vitamin B12 injections soon to see if that would help bring out his speech . . . well, the 5 hr energy contains A LOT of B12 . . . he definitely got much more vocal on it, but it wasn't speech, it was bleating like an animal.  A really really awful sound (a really loud, forced, EEEEHHHHHHHH!  over and over and over and over and repeat).  That we endured for several days.  All day long.

• We've done bloodwork, now awaiting results, for comprehensive amino acid levels.  Hopefully this will tell us what he needs, instead of just throwing money at expensive supplements that we can't return if they don't work for him.

Other than that, he's one smart adorable kid that love his books, educational videos, and flashcards!  It was really nice talking to his new nurse practitioner, when she asked if I thought that regular kids cartoons were just too simple for him (not too complex, but too simple!), for why he won't watch them.  I think part of it is that regular cartoons rely on make-believe and he just isn't into the whole pretending thing (another autistic trait).  His whole expression says, Mom, this is stupid and I don't want to watch it. 

I reiterate, again, that I hope this blog helps other parents of kids with Down Syndrome . . . feed them clean, utilize supplements, and don't wait to teach them anything . . . teach them just like you would any other kid - start early!  Just because they may not be able to react and show you what they've learned doesn't mean they don't know something, or cannot learn it!!!

Kaiden's story is getting out there!

My cookbook (with Kaiden's story in it), Cavemom's Cooking, has been printed and is up for sale on Etsy!  There's even a page for it on this blog. 

And more cool news: I did a guest post over on The Paleo Mama, sharing the short version of his story, which you can read here.

Carotatoxin (falcarinol)

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. 

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?

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!

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:

• 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.

The osteopath had recommended that we give the new digestive enzyme at least a week before trying anything else to treat it; he thought it just might take care of it on its own.  It didn't.  So I got the go-ahead with doctor's approval to do the same diet we did the last time.  Suprisingly, that didn't take care of either. I was giving him coconut milk, avocado, and chia seeds along with the fruit, since last time he got breastmilk with it (protein and fat).  Three days into the diet plan, his whole left hand became very hot and swelled up.  I was concerned about infection, but there doesn't seem to be any evidence of one.  I eliminated the coconut milk, avacado, and chia seeds and did strictly fruit only for 3 more days.  Then added in veggies for 3 days, and tonight added back in chicken.  Right now it involves 3 fingers on his left hand, a little swelling in the back of that hand, and 3 toes that while aren't swollen, aren't quite the right color either. The swelling has gone down some - it's nowhere as severe as when he was 2, but it's still there.  Thankfully they never got so swollen that the capillaries burst, turning his fingers black like last time. 

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."

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!

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!