Go Mom!

...and for Mom of the Year... the envelope please... Clodfobble!

http://cellar.org/2009/applause.gif

Excellent. Great work. You -as ever- have me in awe of your resiliance, resourcefulness and just general go-get-em-ness.

CLOD KICKS BUTT

I expect you've seen Elana's Pantry Clod, but maybe others following this thread in search of information haven't ...

Yes, both Elana and Ali are regular bookmarks of mine. Next in line to check out is Karina, but I only have so many hours in the day to slog through blog archives. :)

It's not so much that I think you need to know this stuff, as that this thread may be a useful resource for others treading your path .. here's another link, to "Gluten-Free girl ..."
And, by the way, Clod did I ever tell you that you're a marvellous, MARVELLOUS wonderful mum? Huh? Did I?

My daughter wants to be a nun!

Thanks, to all of you. I get uncomfortable when people start trumpeting my mothering skillz, because really, I'm not that amazing. At least I don't think I am. It's like lumberjim said, I'm plenty dysfunctional just like everyone else. And I'm not putting this stuff out there to make people aware of my situation personally, but rather the overarching situation of everyone I spend time with these days.

Lots of parents have to go above and beyond to care for their kids, the only thing that makes me different is I'm doing it against the advice of a lot of people. You guys start giving me all this credit, and my first thought is, "No! Didn't you see? I didn't do this; his doctor did this--despite the fact that 90% of other doctors say he's a quack!" It would be easier if I could feel only joy at his progress, rather than this undercurrent of betrayal. But I think the sense of betrayal also makes me fight harder for him, so I guess that's good too. Well, good for him. And good for my massage therapist's pocketbook. :)

OK so here's how it is clod. There aren't any bad parents on the cellar that I've noticed. And there are many good parents here, that I've noticed. I like to include myself in this group even though I know for sure that half of the stuff that happens in our day-to-day existance would win "suprisingly-different parenting" awards at best.

but you really have gone above and beyond for your kid. there are many autism-scale kids in our school and their parents are mostly not involved beyond saying "yup, whatever you recommend" And this is a school that attracts proactive parents. I dread to think what happens in the other schools in the district.

...anyway, we know you're not posting here to receive accolade, but it's impossible to read your progress and not say anything. It is wonderful, you are wonderful, and don't worry, karma will come back and bite you in the ass at some point. I bet your dress will be tucked into your knickers at minifobette's wedding and no-one will notice until the pictures are developped.....

Monster nailed it. There may be, "Lots of parents have to go above and beyond to care for their kids", but how many are there that are doing it by becoming the pharmacy's best customer? In fairness, because they may have been mislead, and probably because they haven't done the work involved to know better, rather than taking the easy way out.

Very true

you deserve all the accolades you can get clodfobble. :)

That she marches on against the pressure is what I admire. There are no experts in the field and more than a little cash grabbing going on. She is rolling the boulder to the top of the hill on her own and one day it'll stay put.

That's so beautifully put griff.

I snagged the article in Pediatrics; let me know if you'd like me to send it to you.

Yeah, I saw a writeup on it; they used a Denver model of relational interaction based off the older method of "floor-time." Which is all well and good, right up until you find out how much it costs... Admittedly, since it only takes 15 hours a week to be effective rather than the 40 recommended for ABA, the savings are relatively tremendous--it's like being allowed to buy a yacht for 60% off. :)

Heya Clod -- how are the kids doing on the 'elemental diet'? Is that working?
I hope everything is still going okay with school!

Clod, you've got your kids on elemental diets? That's interesting because I'm reading a book on Crohn's that recommends Total Enteral Nutrition as a means to remission.

Yes, both of them are on the elemental diet, specifically a brand called Elecare. It's been moderately helpful for the girl, who started a little over 8 weeks ago, but it's been absolutely fantastic for the boy, who will hit the 3 week mark tomorrow. We started on a Tuesday... by Thursday he was drinking it without bargaining, and by Friday he wasn't asking for real food at all, even when he saw my stepkids eating some of his favorite foods for lunch (we did try to keep him away so he wouldn't be jealous, but he got in the kitchen anyway.) By the time he went back to school on Monday, he was perfectly content to pull out his two drink bottles at lunch and snack time. Also, that morning he walked in and spontaneously greeted all his teachers and classmates by name, which previously he wouldn't do even with prompting. That's one more IEP goal checked off the list, and his speech and cognition have just continued climbing as the days go by.

Minifobette's been progressing, but it's of the three-steps-forward-two-steps-back variety. In the first few days after starting it, she was showing very big gains for her, with better eye contact, showing curiosity, and babbling constantly instead of being mostly silent. But then it sort of melted away again. We blamed the antifungal that she had just started, because often the antifungals can make you worse before they make you better. But she didn't ever get better, and when the course of antifungals was done, she only very slowly began getting some sounds back--she's still not where she was in those first few days. Plus, she's still having totally liquid poop, which is obviously bad. Minifob was having it too after he started the formula, but then I adjusted some of his supplements and added a vitamin called biotin, and his very next poop was 100% solid. Hooray! So I'm about to add biotin into Minifobette's cocktail to see if it does the same for her, but I have to wait a few days because we just started a different thing before the biotin did its magic on Minifob, and I'm trying to keep her variables as separate as I can.

Dar, have you ever heard of the Specific Carbohydrate Diet? It's a little less extreme (and a lot less expensive) than elemental formulas, and I've known some people who showed comparable digestive improvements on it, especially adults without additional food allergies to contend with. It's our next pitstop once we start reintroducing foods.

Yay! So glad to hear that there's progress!

No, but that's good info for an in-between choice.

How's the flavor of the Elecare?

Weeeell... The unflavored kind is super nasty. If you ever had your kids on baby formula, it's a lot like that. The vanilla flavor is okay--not great by any means, but mostly tolerable. Those are the only two flavors that Elecare comes in, but there's another brand called Neocate that comes in at least a half a dozen flavors, and supposedly those are better according to some of the other parents. I think they even have a chocolate flavor.

I'll start with something that tastes good. I can always fall back to the nasty stuff if I have to. :D

Are you going to be able to get it covered by insurance?

I don't know. I see nutritionist next week.

Is it expensive?

Oh yes.

My three-year-old requires 1500 calories a day, which translates to 24 cans/month = ~$800. I think an adult male requires around 2500 calories, or around $1300/month.

We had to do a little dance with our insurance to get it covered as medically necessary, but in the end we were destined to win because many states (including Connecticut, where they're based) legally require them to cover it for anyone under the age of 12, as long as you have a medical doctor's prescription.

These formulas were originally developed specifically to treat Crohn's disease, so I'd imagine you have a really good shot at getting it covered as well. But the nutritionist's recommendation probably won't be good enough; you'll need to get your gastroenterologist to write an official prescription for it. (This would only be for insurance purposes, though, anyone is allowed to order it online.)

Holy crap. I'll definitely look into insurance.

Make sure you always reference it as a "complete nutritional formula," and not a "special dietary food," because one is covered and the other never is.

Another reason why I love the Cellar!

I'd post this in the "What's making you happy" thread, but I already posted in there once today. This blog post of my newest fan almost brought me to tears:

The new Gluten free diet and my daughter

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

Oi Clod! You missed out this bit ...

You rawk! We know it, she knows it, and soon the world will, too! :thumb:

Close to tears Clod, amazing.

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.

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. ;)

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.

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:

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

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

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

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

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.

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

New autism study in Houston

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.

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

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.

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?

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.

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?

OH
MY
GOD

I'd've gone postal by now.

You deserve a sainthood for sure.

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.

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 ...).

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! :)

In awe, as ever.

You were overdue for a good one, congratulations.

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

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...

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

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]

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.

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