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-   -   My Kid is a Damn Nutter (http://cellar.org/showthread.php?t=18924)

xoxoxoBruce 12-19-2009 01:58 AM

You're a hero! Or is it heroess? Heroer? Heroine?
Aw fuck it, you done good. :notworthy

limey 12-19-2009 07:29 AM

Oi Clod! You missed out this bit ...

Quote:

It's the best gf ( gluten free) site I've ever seen.
First of all, she's brilliant, second- she's fabulous and third- did I say brilliant?
You rawk! We know it, she knows it, and soon the world will, too! :thumb:

Griff 12-19-2009 09:18 AM

Close to tears Clod, amazing.

Clodfobble 01-04-2010 10:53 PM

Big breakthrough with Minifobette!

As I mentioned a couple weeks ago, she'd sort of slipped back down into silence the longer she was on the liquid diet, and we couldn't figure out what was going on. I realized that if nothing else, it had been quite awhile since we'd done a full cleanout on her with magnesium citrate, and that's always been something she responds well to. So we started it... and stuff just kept coming out, and coming out, but in relatively small quantities. And along with the small bits and pieces of terrible stuff, she was losing clear liquids too, and you can't keep that up for very long without a risk of dehydration. So we took the nuclear option--on Christmas Eve, no less--and went at it from the other end with an enema (yes, they make them in pediatric sizes.)

Oh. My. God. The stuff that came out of her was truly unbelievable. She won't sit on the toilet, so you just have to squirt the bottle up there, and let her hang out in the bathtub until she's done. (And then get out the hardcore disinfectant to clean the tub.) First, there was the green liquid, which is what we normally see in her diapers... but then came the bright yellow mucous, the sheer quantity of which seemed to defy the laws of physics. When she was on the antifungals, we would see a little bit of this stuff come out, but never ever like this amount. Twenty minutes later, she was a changed kid. Tons of babbling and awareness. We've continued to do enemas every 3-4 days on her, and she's doing better and better. We're still seeing the mucous, but less each time. At this point she's pretty much back to where she was in the first few days of the liquid diet. We now have about ten words that she'll say with prompting, though none of them have become voluntary yet.

I don't know how regularly we'll have to keep doing the enemas once we get this particular buildup of mucous conquered, nor do we know for sure what caused it in the first place. Usually mucous is a sign of infection, and our best guess is that the liquid diet fed the pathogens to such a degree that the medications were powerless in the face of such a monstrosity. But if you can't kill it, I guess it works just as well to physically force it out, right? It's clear that the enemas get the cognitive results we want, and are a thousand times more effective than the laxatives, not to mention way cheaper ($1.74 a bottle? Are you kidding me?) so I'll be keeping a stock in the bathroom cabinet from now on. I worry on occasion that I sound like such a cruel mother, but then over the holidays my mother-in-law told me that when she was a kid, her parents would routinely give her enemas for constipation, as there weren't as many medical laxative options back then. They're certainly not fun, but they get the job done, and in the long run they're more gentle on the system than habitual use of any medication.


In other news, now that Minifob's having really solid poop again, we were able to do his chelation challenge test. I should hopefully have the results back in another few days, but I'm feeling a lot more optimistic about them than I was. The day after the challenge dose was an incredibly good day for him, and what's more, the weird cyst that he's had in his neck since he was a year old has suddenly shrunk by half. (It's hard to see in photos, but you can see it a couple of times in this video, most notably at around 40 seconds.) Neck cysts are another one of those things that are inexplicably very common in autistic kids, though I've never heard anyone specifically say theirs went away with chelation. Anyway, I'll post the results when I get them, as I promised to tw.

xoxoxoBruce 01-05-2010 03:58 AM

It's sooo much more fun to be going forward. :thumb2:

And just think, when they get to be those nasty teenage creatures, most mothers have to rely on the, I carried you for 9 months, plus I wiped your nose & ass. But you'll have so much more guilt inducing ammo. ;)

glatt 01-05-2010 08:08 AM

Yay for the steps forward! It's remarkable that an enema can cause speech improvements. I understand the connection, but still, it's not something I would have ever expected.

Clodfobble 02-27-2010 05:11 PM

Good news! We just re-ran Minifob's full IgG allergy panel, plus a handful of IgEs. After 3 months on nothing but elemental formula... we've gone from 27 foods ranked 3+ (most severe,) down to just 3! Walnut, sesame, and garlic. All pretty easily avoidable. There are a handful of mid-range foods we'll still be avoiding to be on the safe side, all of which are nuts or beans, but at least we can see the numbers are trending downward, and we got back those all-important fruits, vegetables, and cooking oils.

Oddly enough, his IgE allergies kind of got worse... on the one hand, his egg and peanut numbers got less severe, but on the other, new IgE allergies showed up for both milk and soy, despite the fact that he hasn't had a molecule of either since before the last time we ran the tests. We weren't going to be giving him either of those foods anyway, so he can be allergic to them all he wants, but it seems weird to me.

But overall, this is concrete proof that the whole elemental ordeal has made a difference for him. I mean, we've seen cognitive and behavioral improvements on it, but it could never be a permanent solution, so I was always afraid that we'd just lose all those gains again when we eventually had to reintroduce foods. But now we know it's (mostly) safe! Hooray!

Also, we ran Minifobette's numbers for the first time. The only foods she ranked at 3+ are pork, soy, and garlic (what is it with my kids and garlic?) Also, she technically has a cow's milk allergy, but it's not like we were going to be giving her that anyway.




Humorously, while I was searching for my previous posts in the thread regarding his allergies, I came across this one by Juniper:

Quote:

Originally Posted by Juniper
Diet modification too. Sometimes odd behaviors in children (and probably adults as well) are caused by allergies or sensitivities to food, such as gluten, wheat products, artificial dyes, etc.

Right there from the beginning, on page 2. Clairvoyant, she is.

classicman 02-27-2010 07:50 PM

Excellent news! Wow - I'm so happy for all of you.

xoxoxoBruce 02-27-2010 08:32 PM

:juggle: Many less balls to keep in the air... excellent.

jinx 02-27-2010 08:35 PM

So do you just slowly add food back in or... what now?

Clodfobble 02-28-2010 08:47 AM

Yeah, we start with chicken broth (homemade only, boiled with the bones, and no added starches,) then after increasing amounts for about a week, we move up to heavily steamed, pureed veggies, then bananas, then harder-to-digest fruits, then actual meat proteins. No more than one new food every 4-5 days. Meanwhile we taper off the formula to balance how many calories they're getting from the other stuff.

We already started with Minifobette. She drank a little of the broth at first out of curiosity, but after the first day she refused it. But she's always been the picky eater, very opposed to anything new, so I didn't think it was from digestive pain. When I make the big batch of broth, I freeze it in ice cube trays, so I can thaw as many tiny servings as I want and save the rest. We started adding one melted cube of broth at a time to her formula cups, and by now we're up to four, which is like 1/2 cup at a time, so she's holding steady at a total of 2 cups per day. Poop is still terrible, but adding the broth didn't change it in any way, so that's something I guess. We've obviously given up on the elemental formula fixing her digestion outright.

Monday is butternut squash day (version 2.) Version 1, I tried to give her a tiny piece of heavily steamed squash, about 1 cubic centimeter--and before she could even swallow it, she projectile vomited all over me. But it couldn't have been a digestive reaction to it, because like I said, she didn't even swallow it. It was just nausea from the new, unexpected taste. At this point she's so sensitive she can even tell when I switch to a new batch of broth. So instead I'm going to try putting a tablespoon of truly pureed, watered-down butternut squash in her formula along with the chicken broth, and slowly build up the flavors. Hopefully after that goes on for awhile she'll tolerate a semi-solid piece of it, and we can start scaling back the number of formula scoops in her cups until she's just drinking chicken broth and water.

The big thing we have to watch out for is the overlap schedule--we can't take away all of the formula until she's got a good amount of bananas going at least, because with just chicken broth and veggies she won't be getting any meaningful carbs (unless we used a starchy vegetable like sweet potatoes, which we're supposed to avoid in the beginning as they're harder to digest,) and baby brains need sugar far more than adult brains do.

classicman 02-28-2010 02:28 PM

Sounds like you have a good plan. Well organized and thought out. Looking forward to reading the updates.

jinx 03-30-2010 09:20 PM

New autism study in Houston


Quote:

Doctors have suspected a link between autism and digestive problems for years. Now Houston researchers are testing a drug with such potential, that the Food and Drug Administration has fast-tracked it. Scientists believe it may improve autistic behaviors.

Clodfobble 03-30-2010 11:55 PM

Cool. Sounds like they're giving the kids digestive enzymes. The article just says "the study medication... helps her digest protein," but they don't say which proteins. Gluten and casein are, of course, two major proteins. I know two kids who are just taking large amounts of DPP-IV (the enzyme that breaks down gluten and casein) instead of being on a GFCF diet. But there are also different enzymes for carbs, fats, and phenols (fruits & vegetables) which help different autistic kids to varying degrees. Minifob takes a broad-spectrum combination enzyme that has helped quite a bit over the months, while Minifobette is a phenol girl, all the way. She can eat meat hand over fist, but give her just a few bites of fruit and it's coming right back out again unless she's on the enzymes.

squirell nutkin 03-31-2010 09:43 AM

That is so fascinating. It's like a friggin detective job.


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