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Clodfobble 03-31-2010 10:56 AM

Yeah, there's a reason I have a stack of notebooks detailing every bite of food, every bowel movement, and every behavioral change the kids have had for over a year now... :)

Sadly, the part that excites me the most is that if enzyme products (as well as some of the other helpful supplements) do get classified as things you could be prescribed by a doctor, then we could get insurance coverage for them. Several of them cost more than a monthly copay.

squirell nutkin 03-31-2010 01:17 PM

What do you think about the papaya enymes? I imagine MiniFobette would be a no go. Are there any naturally occurring sources of these enzymes? Have you checked Standard Process?

Clodfobble 03-31-2010 02:45 PM

Yes, Minifob's multi-enzyme contains papain, and the same company makes formulations without it as well for those with specific allergies. Standard Process is a quality company in general, but a lot of their products actually contain gluten, and they won't certify any of them as completely gluten-free because of cross-contamination problems. Houston Enzymes not only certifies GFCF (as well as soy, starch, artificial anything, etc.) but they make them in chewable form for kids, which is a big help for us.

Many foods have some level of naturally-occuring enzymes, but it's a crazy web to figure out which foods help digest which other foods, and certain cooking processes destroy the enzymes altogether. Plus, eating papaya at every meal is less than ideal. :) Ideally, your body ought to be generating sufficient levels of enzymes by itself, but of course that's not always the case.

Clodfobble 04-05-2010 12:16 AM

Goddamn I hate waiting for lab results.

I mean, on a grander scheme, I like the fact that our doctors base their decisions on confirmed lab work. On the other, there are times when I am quite capable of interpreting the familiar symptoms, and I don't want to freaking wait for some piece of paper to tell me what I already know.

Case in point: Minifob has been having a major regression into his old OCD symptoms. We've suspected for awhile, based on specific improvements while on particular antibiotics, that part of his puzzle includes an autoimmune disease called PANDAS. Basically when PANDAS kids are exposed to strep, instead of getting a sore throat or a fever, they get OCD symptoms instead. Anyway, this flareup gave us the opportunity to test his strep titers to confirm it, which is great and all, but in the meantime I had to live with three weeks of severe door obsessions while I got an appointment with the doctor, went to get the bloodwork, waited for the results, and got another appointment with the doctor to go over the results and get the antibiotic prescription called in. And then the medical assistants were all off for Good Friday, so I don't get the antibiotic prescription called in until Monday. Pbbbt.

Meanwhile, we have also been waiting on stool test labwork for Minifobette to confirm that her 14-day course of Flagyl did not, in fact, clear up the aggressive bacterial infection she developed while on the liquid diet. I knew it hadn't, but again, all I can do is scoop the poop into the little vial with the plastic spoon, FedEx it off, and wait 4 weeks for everyone to get their shit together (ha ha ha) and find the misplaced results so they can finally tell me, "Oh, look, she's riddled with Enterobacter cloacae. She needs more antibiotics."

...And then the medical assistants were all off for Good Friday, so I don't get the antibiotic prescription called in until Monday. At least I only have to make one trip to the pharmacy, right?

monster 04-05-2010 09:17 AM

OH
MY
GOD

I'd've gone postal by now.

You deserve a sainthood for sure.

Clodfobble 04-05-2010 10:52 AM

It's okay. Other than the sudden OCD, Minifob is doing just awesome. Since we started the DMSA, he has gotten much better at conversations, started making spontaneous comments, ("Daddy, you need a shirt!"), and taught himself to read.

The autism community likes to use the "pieces of each kid's puzzle" metaphor, but I actually prefer to think of it as one huge game of whack-a-mole. Minifobette still has way too many moles up right now for us to be able to know much. When we took her off the liquid diet, I was ready to call the whole thing a huge failure for her--but then, the moment she got back on real foods, she started having solid brown poop (she'd been explosive liquid green for months before and all during the elemental diet.) So obviously it did something good for her, despite the infection... that's apparently one mole down we didn't even know about because it's been hiding in the shadow of the big ass bacterial mole. Smash that fucker down, and the board might be mostly clear, or there might be others, you just never know.

limey 04-05-2010 11:47 AM

Quote:

Originally Posted by Clodfobble (Post 645973)
It's okay. Other than the sudden OCD, Minifob is doing just awesome. Since we started the DMSA, he has gotten much better at conversations, started making spontaneous comments, ("Daddy, you need a shirt!"), and taught himself to read.

The autism community likes to use the "pieces of each kid's puzzle" metaphor, but I actually prefer to think of it as one huge game of whack-a-mole....

I love the imagery here :D. You RAWCK Clod, as I think I've said before, but it's worth saying again (and again). Here's sending you Vibes of Patience and Determination (just in case you need any ...).

Clodfobble 05-05-2010 10:19 PM

Today was a good day.

First, Mr. Clod managed to take the whole day off from work, so he could stay with Minifobette while I took Minifob to his two separate doctors appointments. And while he was here, he did like 4 hours of work clearing overgrowth in the back yard. Awesome.

But aside from not having to drag the girl-child along, the doctors appointments went really, really well. The first appointment was with an EarNose&Throat guy, because despite 20 days of Zithromax (total, not all in a row) we just can't seem to kill this strep infection. I was worried because 1.) Minifob's tonsils are not super-inflamed at this exact moment (the pediatrician who most recently saw them said, "certainly very large, but some people just have large tonsils..." :rolleyes:), 2.) as always, he has no fever, which usually gets us dismissed out of hand, and 3.) we've never seen this guy before, so he has no baseline to compare current OCD behaviors to the previous lack thereof. But this doctor was not only willing to take his behavioral history into account, he mentioned on his own that in his experience certain inflammatory diseases can lead to neurological symptoms, and that in fact, maybe it's coincidence, but he's removed tonsils from more Asperger's kids than he can even count. (Because of course the Aspie kids are far enough down the spectrum that they can actually speak up and say, "Hey, I'm in fucking pain here," but I digress.)

Anyway, long story short, he won't commit to removing the tonsils yet, but he'll do an adenoidectomy for sure. If, on the day of surgery, the tonsils look worse than they do now, he'll take them too. It's scheduled for the Monday after his 4th birthday party. I'm a little nervous about the anesthesia (though I've done my research on which are the best options for someone with his metabolic problems,) but overall I'm really excited that for once, there is a definitive solution to a problem: no more adenoids/tonsils, no more places for the strep to live, from now until forever. And if we do have to walk away with the tonsils still intact, at least we'll know that the hidden locale is eradicated, and any future infections will be in a place that a normal doctor can see the inflammation.

Then the second appointment was with the developmental optometrist. The joyful part there was he did the whole exam without any kind of complaint. He played the "eye games" and held the "camera" up to his face and stuck his chin in the focusing machine and even let the optometrist shine the refractor in his eyes. He downright enjoyed it, which I absolutely did not expect! End result is that he'll be getting glasses: first, to correct the astigmatism she found, but secondly, to give him a very slightly farsighted prescription for therapeutic purposes. The goal is that his eye muscles will have to deliberately relax in order to see through this ever-so-slightly "wrong" prescription, and she pointed me to a number of studies indicating that this can not only slow the onset of nearsightedness in children genetically predisposed to it, which he most certainly is, but it can also significantly reduce visual self-stimulation in children on the spectrum (poking the eyes, examining items peripherally or at an extremely close range, deliberately shining lights in the eyes, etc.) There are other tricks one can do with the lenses, such as giving them a prism shape that would warp the field of vision for a normal person, but for someone who is already seeing the world like a funhouse mirror, will make everything look normal. But we have to wait until he's able to take more detailed vision tests before we can determine if that's something that can help him.

But he looks so dang cute in his tiny wire frames! :)

monster 05-05-2010 11:00 PM

In awe, as ever.

xoxoxoBruce 05-06-2010 12:13 AM

You were overdue for a good one, congratulations.

On his best behavior... :idea:maybe he's allergic to his sister.

Clodfobble 05-23-2010 11:30 PM

2 Attachment(s)
The birthday party was a huge success! I couldn't be happier. The perfect number of kids showed up, everyone was well-entertained and well-worn-out, the weather was beautiful, and to top it all off I got to socialize with a mom who told me she's just decided to start their dietary journey, and we're going grocery shopping together in a couple of weeks to help her get started.

Here's a look at the awesome not-cake I made, and the even awesomer birthday boy. (And hey, a free cleavage shot, as a reward for putting up with this endless thread...)

5:45 AM tomorrow morning, we arrive at the hospital for his adenoidectomy, and hopefully tonsillectomy. That'll be fun, no doubt. I expect to be scarce for several days...

monster 05-23-2010 11:35 PM

That not-cake rocks. Boobies too. Surgery not so much, hopefully the results will make it worthwhile. Good luck to all concerned

Clodfobble 05-23-2010 11:38 PM

Thanks! I'm actually kinda sad about the boobies, they are a pitiful excuse of what they used to be. Almost worth having another kid just to get the gigantic nursing boobs back. [/but not quite]

kerosene 05-23-2010 11:38 PM

That not-cake looks delicious! And mini-fob has grown up so much! I still think of him as a little toddler. Great job, Clod. Also, good luck with the surgery.

monster 05-23-2010 11:53 PM

But those of us who get to keep the nursing boobies also get to keep the baby belly too....


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