Friday, August 12, 2011


oh yeah, I almost forgot - and how could I seeing as this has consumed us this week!

Monday Kaiden threw the worst all-day tantrum, ever.  All because I'd held his spoon in my left hand instead of my right, in hopes that he would begin to immitate me that way (mirror image) since I think he's right handed. 

So . . . after all that drama out of a 2 yr old where he clearly let me know he could, he just doesn't WANT to self feed. . . I'd had enough and decided he WILL begin self feeding, NOW. I've tried every method I could think of and nothing has worked; now I get to out-stubborn him.  I strongarmed him, and forced hand-over-hand feeding.  I had to pull his little arm away from his side, wrap his little fingers around the spoon, bend his little elbow, and force the spoon to his mouth.  Then get him to open his mouth and accept the food. And lots and lots of praise for anything that went right! I've been documenting his progress with pictures on Facebook.  Yesterday was the first day that didn't involve screaming and tears but we still had plenty of "mad face" and whining; today at lunch was the first meal that didn't involve screaming/tears/mad face/whining!  And we even had cooperation!  I only had to prompt him to pick up the spoon about 25% of the time. 

I imagine I'll be doing hand over hand guiding the spoon to his mouth for awhile until his aim is reliable but I'm okay with that.  We're making progress!

Clinoptilolite Zeolite, anyone?

Really, I was only looking for the ingredient list to Rockin' Green's new "ammonia bouncer" stuff, as we are currently experiencing some cloth diaper ammonia issues thanks to a laundring mistake I made in June.  Since no one else online can find the list, they must not list it on the package. I don't have a package, and I'm not going to order one just to find out - so I did my best looking at pictures of the package online.

** I get proprietary information and all, but is it fair to the consumer to list your product as all natural if you won't disclose the ingredients?  **

ANYWAY . . . since it didn't list what they use, I looked up "natural ammonia remover" and came up with clinoptilolite zeolite, which forms (over 50,000 years) when volcanic stuff meets seawater.  And then I read about its uses as a garden aid, dietary supplement for livestock, even dietary supplement for humans.  And it's been touted as a cure for everything (really, what natural product hasn't, these days!!) and says on many websites that it is used in the treatment of autism and down syndrome.  It doesn't say anything about clinical trials, just a few peoples' online testimony.  It's also sold as cat litter (not the clumping kind).  Oh, and don't forget, a cure for cancer.  (But don't inhale it or you'll likely end up with mesothelioma.)

What it does is adsorb (not absorb) ammonia (among many other things) and transport it out of the body.  With regard to cat litter, it's supposed to cut down the odor.  Alright, so since this stuff has so many widespread uses, I thought I'd try it.  If nothing else, it should make for great garden fertilizer!

I purchased a 25lb "garden aid" bag off Amazon (since nobody here in town carries it) for under $9.  Shipping was expensive due to the weight, but still cheaper than buying the exact same single ingredient sold as a dietary supplement for 4x the price, yet less than 1/25th the size.  Nice, right? 

So, I'll try adding it to the water when washing diapers.  Hopefully it will take care of the ammonia issue there.  I can sprinkle some out in Lola's outdoor area.  Should keep down what little stink we do have out there (although raw feeding has gone a long way to cutting down the stink!).  I'll probably even add some to the garden this fall as fertilizer.

And on to Kaiden . . . I'll give it a try myself first to see if I notice any difference - but in regards to T21, ammonia is supposed to accumulate in the brain thanks to the overabundance of glutamate from the extra chromosome.  And clinoptilolite zeolite is supposed to adsorb ammonia and transport it out of the body.  We'll see what happens.  If nothing else, it certainly can't hurt Kaiden unless he sticks his nose in the bag and inhales, repeatedly.

Sunday, August 7, 2011


This article recently came out:

"Memantine works, Costa hypothesizes, not by boosting the growth of brain cells but by normalizing how existing cells use the neurotransmitter glutamate. Because people with Down syndrome have three copies of all or most of the genes on Chromosome 21 instead of just two, they have about 50 percent more of any proteins encoded in that chromosome. One result, Costa has shown, is that the NMDA receptors of Ts65Dn mice are “hyperactive” — they overreact to stimuli. By responding to too many things, they learn too little; the signal is lost amid the noise. But giving memantine to quiet the noisy NMDA receptors, Costa has found, makes the brain cells react almost normally."

Since removing nightshades from Kaiden's diet stopped his seizures and had the side effect (if you can call a side effect!) of waking him up - this article has me fascinated.  There are nicotinic receptors in the brain that work with the acetylcholine and the glutamate and I've come across some interesting studies and information about how that all works together.  Nobody has applied it to T21, I'm sure . . . or at least if they have it certainly hasn't hit the internet.

Just based on my preliminary readings I think I was wrong about assuming nightshades dampened Kaiden's nervous system, not allowing enough sensory input - this has me now thinking that it allowed way too much sensory input and he couldn't filter it with the extra glutamate.  Less (or no) nightshades = less sensory input = less "noise" = sensory input he could handle.

 In case you are wondering WTF I am talking about, nicotine is a glycoalkaloid found in nightshade foods. (Yes, tobacco is a nightshade.  No smoking cigarettes for you kiddo, ever.  Don't even try it.)  The glycoalkaloid solanine is blamed for arthritis pain, among other things.  I wondered why Kaiden couldn't have nightshades but blueberries, which also contain solanine, and can affect those with arthritis pain - didn't affect his seizures at all.  Blueberries don't appear to contain nicotine.  And blueberries are touted as a brain food and sold as supplements for Alzheimer's patients.  There are studies out there for both solanine and nicotine as individual alkaloids being useful in treating Alzheimers.  But, nightshade foods contain them BOTH, not just one or the other. There are no studies that I can find that uses them both, together, in regards to Alzheimer's or Down Syndrome.  My current theory is that the two alkaloids work synergystically together, meaning that because they are ingested TOGETHER, they have a different outcome than if they were ingested SINGLY.

I have a ton of reading to sift thru to attempt in figuring this out.  But at least I have another avenue to look at because I was pretty much stalled where I was at.  Something to do with glutamate, acetylcholine, and nicotine in the brain.  I almost wish I had a degree in neurology; it would make for less work on my part in trying to understand what looks like English, but is almost completely unfamiliar to me.  Lots of new words to look up and then to understand what they do within the brain.

Should I care?  I don't know.  I think some parents would just be thrilled their child was doing so amazingly well in spite of the predictions thrown at them, and leave it at that.  No, darn it, I want to KNOW what the heck is going on in there . . . because if I can figure it out and have evidence & research to back it up, maybe I can get more parents to understand about nutrition and that western medicine, with its side effects, doesn't have to be the way to go.  There are better, healthier choices out there.

Monday, August 1, 2011


Kaiden loves to be read to.  So much so, that this past week he's been throwing crazy tantrums until somebody reads to him!  He will go pick out a book and bring it to me to read, which I love.  And then he wants me to read the same book about 800 more times in a row . . . he's funny about new books.  Wants nothing to do with them at first, takes a few reads to get used to them.  And OMG, don't even TRY to "read" him a picture book with no words!  He will throw that book across the room every time.

I purchased some foam board and Nick cut it down for me into some nice sized pieces.  There's 40 pieces, two sided, so that makes 80 sides we can use to put words on.  I'm hoping to find some stickers to go along with the words, but if not, I'll have to take pictures, have them printed, cut them out, and tape them on.  Yes, flashcards would be easier, but he chews on them; they don't last long. 

Then I need to get some (really I should go write this on the shopping list RIGHT NOW) brightly colored tape, maybe along the lines of painter's tape, that I can write words on and stick to things at Kaiden's eye level.

Kaiden is very vocal but still no words.  Not since Dec 18th, 2009 when he had already said "apple" "asshole" (oops!) and "Mama".  At this point we think the seizures damaged the connections for speech and it's up to us to help him form some new connections.  A big thanks goes out to another T21 Mama for the suggestion of using a Fisher Price Smart Cycle - as the motor skills grow, so do the speech skills.  After all, speech is a motor skill if you think about it.  Some therapists recommend a treadmill, but what fun is that for the kid??  And now for the financial aspect of it: CRAIGSLIST!!!  Those blasted things are $80 new at Walmart and that's just for the cycle without any games.  I found one on craigslist that comes with 3 games for only $10.  Sure, I'm the 3rd owner and it needs a little help staying on the highest height setting, but as long as it works, I'm good.

I can't remember if I've mentioned it without going back and reading previous entries, but Kaiden has now mastered crawling.  He rarely belly-crawls like he used to.  And if I see him do it, I tell him "you can get up and crawl".  He looks at me and then gets up and crawls.  He also crawls to me now when I tell him it's mealtime.  "Kaiden, are you hungry? C'mon, let's go eat lunch!"  He pops up like a gopher at me saying his name, and you can see it in his face he recognizes "hungry" "eat" and "go".  He recognizes a lot more words/phrases than that.  Getting him to cooperate is another story.  This morning's breakfast involved a tantrum where he tried to fling his plateful of food across the room.  I told him that was not allowed and not acceptable behavior and he didn't try it again.  Which brings me to another point.  Raising children is a lot like raising dogs.  Or at least how I raise our dogs.  Training is simple: be consistent. Use the same words/phrases for the same things.  Our first pair of dogs learned so many phrases over our many years together I rarely had to give them commands, I'd just talk to them; they knew exactly what I meant.  So with Kaiden I've done the same thing.  Used the same words/phrases for the things I want him to learn.  Be consistent. It pays off.  I even cross reference his books & toys with him.  Some of his favorite books are the "First 100 Words" books - just pictures of items with the item's name.  We have 3 of these books and while there are quite a few unique items to each book, there are also overlaps.  So we will look at more than one book at a time and I point out the same things, to show him they are the same.  And I'll even quote from his story books about relevant items.  His favorite book is "Moo, Baa, La La La" by Sandry Boynton.  He LOVES farm animals!  So when we see pictures of farm animals, I quote from the SB book and point out the animals in the order they are in the story book.  I hope by the time he's walking he still loves farm animals as much so I can take him to a farm to see them.  The MN Zoo has a great farm section.

Although I didn't hear them say it, Nick heard the Gillette's doctors say they thought Kaiden had the skill set of a typical 4yr old with T21.  The best quote I have resulted from a conversation with Kaiden's physical therapist: "Standard (American) diet + standard therapies = standard result."  What does this mean? The best nutrition and alternative therapies pays off!  Don't give me that crap of "of course he's going to be delayed, he has Down Syndrome".   We gave away the therapy books that we'd purchased upon learning Kaiden had T21.  So many people love those books and find them so helpful.  In fact, they are given to new parents of  T21 baby by the school system!  However . . .  let me tell you, we found those books to be condescending and depressing. They are "standard therapy" all the way.   We've made up our own activities based on what Kaiden shows us he wants to do.  We've created rough housing games that he loves to help him learn to better control his balance.  He is finally just showing the beginnings of the stage where he wants to do stuff himself.

He is still not self-feeding.  I sure wish he was!  I even bought fun toddler plates & spoons/forks.  He prefers them over the boring regular bowls (and let me know it!) and even allowed me ONE TIME to assist him in loading the spoon and bringing to and put into his mouth.  One time only.  I know he CAN do it . . . I've seen him do it once or twice all by himself. . . so hopefully now that he is in the beginning stages of "do it myself" he will begin to feed himself.  Hopefully.  Hell, I was hoping for that a year ago.  We'll see.

Kaiden is also obsessed with a potty training book.  I hate that word, potty. It's baby talk!! But since he loves the book, I might as well use the words the book uses to be consistent. Does he just like the pictures, or does he understand what the book is about? Who knows, but it sure can't hurt to try.  I will be sad though when we no longer have a child in diapers.  I love cloth diapers!! 

We more travel plans this month and have an eye appt coming up on 8/25.  I have no doubt that Kaiden's vision will still be perfect - but I want him checked every year anyway.  I hope he inherited his father's vision and not mine!

That's all for now :)