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!!

Changed up the amino acid supplements

Friday we had his follow up appointment with the osteopath. Kaiden had not been sleeping well at all lately, even with cutting back on the GABA, so earlier this week I took him off the taurine and GABA completely to see if he'd sleep better. And in about 3 days, he did. Not great, but better than he has been. I don't want to give up on the amino acids, because he is gaining mobility, muscle tone, and able to focus better.

The doctor agreed we should suspend the taurine and the GABA for now, and try L-Theanine (another amino acid) and digestive enzymes for the time being. His last fecal screen (in July) showed inflammation in the gut (blood in the stool + elevated white blood cells); we also talked about my guess of what was causing his diaper rash. It was nice to hear as we discussed everything, "Your Mommy instincts have been right on, so if you see anything or have any more insights, give us a call!"

L-Theanine is supposed to help regulate his sleep cycle, and we are to give him one capsule at bedtime. Last night he got his first dose and he slept pretty well. He was up several times for water (up once for water is his normal sleep routine) but went quickly back to sleep each time. He did wake up earlier than we wanted to get up on a Saturday, so we brought him into bed with us to get a couple more hours of sleep, LOL!!!

I'm a little hesitant with the digestive enzymes; earlier on I had tried bromelain with him and he didn't tolerate it at all. But, he eats pineapple now with no issues so hopefully this will go okay. I had been thinking that in the last several months he's not getting as much nutrition out of his food as he should so this should help - as long as he tolerates it. Breakfast went well but the day's not over yet.

Next appointment is at the end of January. :)

Today's rant:

I get that most of the world is uneducated about what Down Syndrome really is or what it means, and that includes the so-called "experts". But it never fails to amaze me when people say "oh, (s)he must not have it that bad" or "oh, (s)he must only have it a little bit". It's not a viral or bacterial infection, people. It's an extra chromosome. Either you have it or you don't. "That bad" or "a little bit" largely depends on diet and therapies and how hard you make a person work instead of coddling them because you think they can't do anything or you feel sorry for them. Give them a chance. Give them MANY chances. From what I've observed and learned, it's not that people aren't cognitively capable . . . they might not be physically able but that doesn't mean their mind doesn't work.

When Kaiden began to show delays, it wasn't blamed on the illness that cropped up at the time - the yeast overload and then the seizures - in fact, we were told that the seizures WOULDN'T affect him. It was all blamed on the extra chromosome, we were told the delays were normal and we should expect them. But I'd see a glimmer in his eye, moments of clarity - sometimes only a moment, sometimes maybe an hour, where I knew beyond a shadow of a doubt he was in there, in that prison of a body. And once the seizures stopped . . . but I can't blame his delays all on the seizures. It was diet. Yes, diet. For him, nightshade foods. The seizures were merely a side effect of nightshade foods. He, unlike many of the population, has a very low level of tolerability. Highly sensitive.


My main goal of this blog is to get someone else to try eliminating nightshade foods - for Down Syndrome or any other "global delay" disorder. Just try it. Am I right? Or are we an isolated case? I'll never know, NOBODY will ever know, unless more people try it out.

GABA update

It's been 1 month since my last post. It's like the GABA builds up in Kaiden's system. We've cut down to 1/2 capsule in the morning, but he is back on the "up every hour on the hour for 3 hours, sleeps for 2 hours, then up, and may or may not go back to sleep" routine again. I mix his supplements in 8-day packs, so the next time I'll cut back to 1/4 capsule in the morning. At least with cutting back to the 1/2 capsule dosage, he is back to being happy. At the full recommended dose, he was a bitch and a half!!

Kaiden is walking pretty well, when he wants to walk. He can take 20+ steps on his own now, no problem. Because his right hip is loose, he swings his right leg out rather than bringing it straight forward and bending the knee appropriately. But we're working on it and he's getting there. :) GABA is also supposed to help with low muscle tone, and I noticed this morning during bath time that his skinny little chicken wing upper arms seem to be just the tiniest bit bigger. His thighs look a wee bit bigger too, but his diapers still fit the same. We still have 2 weeks to go before his followup appointment regarding the GABA. I wonder what will happen if I have to cut his dosage back so much that it's non-existant?

The experience with GABA has been interesting and a bit unexpected: his food related diaper rashes are absolutely GONE. I get that amino acids are broken down proteins, so thereby the gut doesn't have to work as hard to digest them and it allows the gut to heal . . . makes sense now that doubling his meats was too much protein in his system and caused an inflammatory gut reaction . . . I think. The rash was from his urine, so here then is my latest thought: too much meat = inflamed gut = not breaking down the excess protein = more protein in his urine = diaper rash???? Hopefully the doctor can answer that one for me.

On to GABA

Since we had positive results with the taurine, the doctor suggested we try GABA (http://en.wikipedia.org/wiki/Gamma-Aminobutyric_acid), the next step in amino acid therapy. It's supposed to help aid cognitive function as well as low muscle tone. The doctor said if the full recommended dose was "too sedating" for Kaiden, to cut back to a 1/2 dose, and to only give it at night.

O.M.G. the GABA is like crack for Kaiden!! Or speed, caffeine, whatever. He does NOT sleep with this stuff. Had to cut back to 1/2 a dose and only give it in the MORNING. It takes 5 hours for him to wind down just a little bit. Not that it makes him hyperactive, it's just that he WILL. NOT. sleep if he's been on it past noon. He gets his dose in his breakfast with all his other supplements. Normally, if he doesn't finish all his breakfast, I save it to add to his lunch or supper so that he gets all of his supplements for the day. Now though, with the GABA added in there . . . it better be gone by lunch and then nighttime sleep won't be horrible, but it won't be great. Cannot, CANNOT give it to him at night. Either way - lunch or supper - when he finally does go to sleep, he is up on the hour, every hour, for 3 hours and very very thirsty at each wake-up. Then he will sleep for another 2 hours. If he had it at lunch, then after that last wake-up he will sleep the rest of the night. If at supper . . . nope. After that last wake-up, he is UP for the day, even if it's 3am. Ooooh boy, not cool!!! Melatonin has zero effect on him, so that's not an option.

This is not normally how kids react to GABA . . . I guess for most kids it helps them sleep. LOL, I get the kid that refuses to sleep . . . but he's been this way since the seizures stopped over two years ago. After awhile, you get used to less sleep, but to be honest the paleo diet helps with that. I used to be able to nap anytime, and now I can't. If I nap, I'm up all night. The only way I'm tired during the day now is if Kaiden has a sleepless night and needs me to up be with him. Most of the time, if he's up, thankfully he's content to play in his room until morning. He cannot climb over the gate in the doorway . . . yet.

Anyway, it seems to be helping his mobility. He's up to 14 - 16 steps unassisted, when it's made into a game. On his own, when it's his own idea, about 4 steps. He'd rather crawl, it's easier and faster at this point. And man, can he scoot when he crawls!!! He's FAST!!

Our follow up appt for the GABA is on Oct 26th. We'll see what's recommended! :)

Taurine!

Can I say just how much I LOVE having a doctor that not only feels that Kaiden's weight and size is just fine (he's a tiny little guy, 23lbs dripping wet at 3 1/2 yrs old), but believes in and supports what I'm doing for Kaiden?? Not only that, but takes the time to think about it, and suggest new things to try. That, my friends, is priceless.

So, for awhile now I've suspected that Kaiden's nervous system is too "noisy". Eliminating nightshades went a really long way to calming that down. At Kaiden's last doctor appointment (July 25th) we talked about Carly, the girl with autism that everyone thought had the mental capacity of a 6yr old, but once she found a way to communicate (typing) instead it was discovered she was brilliant. Carly said that her autistic behaviors are from her needing to create sensory output to cancel out the massive amount of sensory input her nervous system lets in. While Kaiden has never been even so much as suggested to have autism, he displays many of the same behavioral traits. Hearing Carly say that it was to cancel out the noise . . . that made so much sense. That's what Kaiden's doing, and I was right! Well, so was another doctor that wrote a little-known paper about it . . . funny how autism gets all the publicity, and Down Syndrome falls by the wayside. Personally I think that is because autistic individuals look "typical" whereas Down's individuals have certain facial characteristics. Humans at their very basest instinctual level, do not like individuals that look different. Neither do wolves, who have a very similar society structure. But I digress . . .

After we talked about Carly, it was like watching the lightbulb click on and Kaiden's doctor said, "What about taurine?"

Taurine an acid containing an amino group that among other things that does quite a bit for the body. You can read about it here: http://en.wikipedia.org/wiki/Taurine. "Taurine is essential for cardiovascular function, and development and function of skeletal muscle, the retina and the central nervous system." It's been useful for epileptics. I have yet to understand it all, but at any rate it is supposed to help calm a noisy nervous system. It's also essential for normal skeletal muscle function among many other things.

He gave us a bottle to try, and since it didn't contain any excess ingredients that Kaiden can't have, we started it the next day. I didn't notice much of anything that first day, but the next day, Kaiden began free-standing and taking steps again, which while he does at preschool, he hasn't done at home since November of last year. His comprehension, performance, and attention has continually improved. When he stood up and hit his head on the table (LOL, he's getting taller!), he put his hand to the injured spot and whimpered a little. When given the drain cover for the tub at bath time, (he knows where it goes, but rarely gets it in the right place), he moved all his toys out of the way and made sure it was *exactly* in the right spot. When bathtime was over, he gave me every bath toy in the order I asked for them. When he had a tantrum at breakfast and pinched me (and received a verbal reprimand), he stopped, gave me the big "I'm sorry" eyes, then gave me a hug. When he indicated he wanted to watch a video (he likes "Your Baby Can Read" and "Teach 2 Talk" videos), he not only sat thru 1 video, but wanted to watch more and more and more, and didn't lose interest until the 4th one!

This is what I've been saying all along . . . I KNOW this kid is in there . . . it's just a matter of getting his body to cooperate.

June 2012 update

Kaiden is currently attending the summer school program for preschool.  And he loves it!!  He's been willingly walking from the truck, thru the parking lot, up the sidewalk, into the school.  He's never wanted to do that before (Mama, carry me!!!!).  Once in the classroom, he goes straight to the trampoline to play.  He's been practicing bouncing at home, in front of the bathtub.  Not jumping yet, but at least bouncing  - which is good, he needs to bend those little knees more!  When he walks, he forgets to bend his knees and walks stiff-legged.  He can walk with one hand on a handrail, or one hand attached to another human.  He'll take independent steps at preschool, but not at home.  He was up to 6 steps unassisted last November, but by January he decided he didn't want to do it anymore for whatever reason.

One thing he's learned that I am so proud of him for - he's finally found a way to communicate his needs.  This kid WILL NOT sign (nor will he point or finger feed, or do anything he doesn't want to do with his hands, yet he can use them to play just fine!), and although he is very vocal, he is non-verbal, meaning he doesn't make specific words or sounds for anything.  Now, he will bring me things he wants.  Need a toy turned on or fixed?  Bring it to Mama.  Need a diaper change?  Take a diaper out of the cabinet and throw it at Mama.  Hungry?  Grab a bib (or something food related) and bring it to Mama.  He's been doing this with books (Mama, read to me!) for quite some time, but now it has progressed into communication for all sorts of things.  He even attempts to throw Lola's toy to get her to chase it.  He can throw things with some weight, but the lightweight things don't go very far.

I've been told recently that in order to get the word out there about the effects nightshade foods have on those with Down Syndrome, I need to do it thru the blog.  Well, I'll never delete any of the info, that's for sure!  I may forget to update it as life with a 3yr old takes over, but we're still here!  Kaiden's made a ton of progress in the 2 years he's been seizure free, but is still delayed.  Aside from things that are muscle-tone related (mobility and speech), he's on par with a 2 yr old cognitive level, which puts him about a year behind.  And since he lost out on about 9 - 10 months of development when he had the seizures, he's doing pretty darn good!