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monster 09-10-2009 01:38 PM

Excellent news. So happy for you that the school is working

xoxoxoBruce 09-11-2009 01:08 AM


1500 mg Vitamin C (immune support)
2000 mg fish oil (immune support)
4 tsp apple cider vinegar (digestive support)
1 tsp multivitamin powder
1000 mg Calcium
1 1/2 tsp Metronidazole (antibiotic)
5 drops Vitamin D3 liquid
Probiotic capsule (because even if it's only in him for a few hours before the next antibiotic dose, he needs all the help he can get.)
20 mg Zinc
Epsom salt lotion (magnesium sulfate)
**IgG 2000 DF - starting soon
Now to figure out how to get all that into one yummy cookie. :D

Clodfobble 09-11-2009 11:36 AM

We're still practicing the pill swallowing. He'll do it on accident sometimes, because I'm starting with the smallest of (empty) capsules, but he doesn't get what I want him to do yet, he mostly just tries to chew it. What I need to do is just knuckle down and give him a real capsule, because then if he chews it there will be an immediate negative consequence in the form of nasty medicine powder flooding his mouth.

classicman 09-11-2009 12:26 PM

Yeh it'll taste really bad and he may NEVER let you try that again.
Try training him with frozen peas. I had issues learning how and thats what my mom did. I eventually "got it"

classicman 10-07-2009 10:20 PM

Fight to overcome autism gets major boost, higher priority

Washington, DC — Last Wednesday, President Obama visited the National Institutes of Health (NIH) to announce the single biggest investment in biomedical research in American history. Among the $5 billion in grants he announced are new explorations of longtime research targets from cancer to heart disease. But the grants also include the largest-ever investment in an Obama administration priority that has so far gone mostly unnoticed: autism research.

President Obama has made autism a focus from the first days of his presidency. Less than a week after he was sworn in, my department’s Interagency Autism Coordinating Committee released its first-ever strategic plan for government autism research. And President Obama has backed this plan by adding $1 billion to his budget for autism over the next eight years. Altogether, the federal government will provide nearly twice as much funding for autism research in the upcoming fiscal year as we had just three years ago.

We needed a new focus and new resources because autism has emerged as an urgent public health challenge. As recently as the 1990s, scientists thought autism was a rare disorder that affected 1 in every 2000 kids. Earlier this decade, we revised that estimate to say that 1 in every 150 kids was somewhere on the autism spectrum. Our most recent data suggest that autism may be even more common than that. Almost every American I talk to about this issue knows at least one family that is affected by autism.

Autism has created new challenges for families, schools, and health care providers. When parents discover that their child has autism today, they’re left with a lot of questions, but few answers. What causes autism? How can it be prevented? Which treatments can help? Where can I get needed services? These questions aren’t new. And the government has tried to address them in the past, most notably with the Combating Autism Act, which passed in 2006. But there has never been a comprehensive, well-funded effort across government to overcome autism – until now.

Clodfobble 11-03-2009 01:30 PM

Round Two, FIGHT!
Minifobette's labwork came in, which means we can begin the real work of getting her healthy again.

Some numbers are better than Minifob's, but most are worse. The good news is she does not have a vicious bacterial infection like he did (and still does, based on current symptoms,) but she also shows zero good bacteria colonization, despite being on strong probiotics for months. Mild fungal infection, which if we're lucky will be knocked out by a single course of antifungals (not the case with Minifob, but here's hoping.)

But her other metabolic numbers are farther off. They show a significant need for carnitine, which is typical in kids with low muscle tone and delayed physical milestones (definitely her, and definitely not her brother.) Her lactic acid level is also too high, so they're going to do the same bloodwork he had to rule out a mitochondrial disorder. But most distressing is that 5 of the 8 detoxification markers are extremely high (all these levels they're testing for are various substances in the Krebs Cycle.) This is typical of kids who had a single large regression (Minifobette,) rather than weirdness slowly creeping in over time (Minifob.) It doesn't tell us anything about what levels or kinds of heavy metal poisoning she may have stored up, just that we know the cycle's broken, so whatever goes in definitely isn't going to be coming out. But she's far too young to see if chelation drugs can pull anything significant. The only option right now is to try to raise her glutathione level so her body can maybe do some of the work itself after all, but realistically it will be a stopgap measure at best until she's older. IV glutathione is the most effective option, but it's not really a viable one. So we're going to try a transdermal (skin cream) compound first, and test her again in a few months.

Meanwhile, we decided a few weeks ago to just rip the bandaid off, and put her on an elemental diet. This is a liquid formula that is 100% pre-broken-down amino acids and nutrients, so the digestive system gets to take a complete and total break. No more allergens, nothing barreling through and agitating open wounds or adding to the inflammation, just time to heal. It's a very safe and effective treatment, but parents usually exhaust other options first because taking away all food is, of course, not pleasant. But we figured better now than later. For one thing, she's so young there's no social aspect to food for her yet. For another, as long as she's under the age of two, the law says our insurance has to cover it, no questions asked. The formula runs a little under $600 a month, so that's important. The hope is that within 2-3 months max she should be healed and digesting normally, and then we can start reintroducing foods. With any luck this will allow most if not all of her food sensitivities to go away as well--no more pooping completely undigested fruit! We're still hoping it won't be necessary for Minifob, but if he doesn't respond to this latest (third) round of very strong antibiotics, we're going to start running out of options soon.

It was hard to get her started--she refused it for 30 hours straight, and then I broke down and fed her real food for dinner that night because she was literally staggering. But the next morning I went right back to offering only the formula, and from then on she drank it without complaint. And within a day or two she was drinking it eagerly and being much more energetic and happy all around than she has been in a long time. I feel pretty sure that whatever else is going on, she is in less pain now than she was. Unfortunately her poop hasn't improved yet--it's different, which is something, but it's still mostly liquid, very green, and there are still the occasional mystery white globs. No idea what the white globs are--they say they don't think it's the same as the white poop you get with liver failure. It might be dead yeast colonies, but they're infrequent so we've never been able to run a test. The nutritionist told me that even though the input is liquid, she should be having completely normal, solid brown turds (not the word she used) on this diet, so we'll know when we get there.

glatt 11-03-2009 02:13 PM


Originally Posted by Clodfobble (Post 605503)
It doesn't tell us anything about what levels or kinds of heavy metal poisoning she may have stored up

If there are heavy metals in her system, where do you think they might have been coming from? If I remember correctly from pictures of your house, it's pretty modern. Do you think it's environmental, or food, or something else?

Are you even saying here that you think there may be heavy metal poisoning?

The amino acid liquid diet is amazing. I hope it works well!

Clodfobble 11-03-2009 02:58 PM

Trace amounts of stuff are everywhere--soil, carpeting, air, and especially tap water. It's not at the level of eating lead paint or anything, this is the little stuff normal bodies just process right out. But if you don't process it, it builds up, and eventually gets to dangerous levels. If you've already broken the system, for example, 4 vaccination shots will get you to a symptomatic level of aluminum. (You get trace amounts of aluminum drinking sodas in cans, too, not that she's ever had a soda.) Most cities' tap water would get you to dangerous levels of several things in just a few months of drinking it. Cheap bed mattresses commonly use arsenic as a flame retardant. Or if you have a single piece-of-crap toy from China with lead in it, chewing on that one toy could do it. We're constantly taking it in and peeing it out, no harm done. But if you couldn't pee it out, you'd be in trouble.

I do think she has some buildup, but we'll obviously test to be sure. And once we know she's high in, say, arsenic, we can get appropriate test kit(s) that we can use on stuff around the house to help us figure out where it's coming from and hopefully get rid of the offending item.

limey 11-04-2009 02:21 AM

Clod - nothing to say here, but wow, crikey. Your kids are so lucky to have the determined powerhouse that is you for a mum!

Queen of the Ryche 11-09-2009 03:59 PM

Just a few happy thoughts and hugs for you Clod.

Clodfobble 11-11-2009 04:02 PM

It's become obvious that I seriously screwed up.

2 and a half weeks ago, we were invited to a birthday party of one of Minifob's classmates. The invitation proclaimed GFCF cupcakes would be available, so we were excited to say we could actually attend. I was pretty sure they would be made out of rice flour (as most pre-made GF items are,) which is one of the things he has a digestive sensitivity to, but I figured we could handle a day of extra bad diarrhea for the opportunity to actually practice social skills and pretend he has friends in the real meaning of the word.

Well. As you can tell from the tone of this post, that was a poor decision. It occurred to me too late that they were almost certainly made with real eggs, which he has a true allergy to, and a pretty strong one at that. I'm so used to making everything myself, I actually forget to think of all the things he can't eat--I forget that normal people don't make their bread products with potato starch by default like I do.

So. Full-on screaming and flailing tantrum within 30 minutes of eating. Needless to say, he couldn't participate in the rest of the birthday party. So much for social interaction. But it continued for 5 straight days. And since then he's been borderline--he'll mostly behave in the house, but I can't take him out in public. Confirmed that the hard way when I tried to let him walk with me to the mailbox like we'd been successfully doing for a couple months now, and had to do the neighborhood walk of shame carrying him all the way back to the house shrieking at the top of his lungs.

Cognitively he's still pretty much where he was, it's just his behavior that's regressed 6 freaking months. His teacher says he's suddenly having some trouble with changes in their routines, things he has been fine with since day one of school. Yeah, tell me about it. Obviously the egg is long out of his system, but the doctor's theory is we reinflamed his intestines by pouring allergens through it just as it was trying to heal, and he'll need extra time to recover from that. Great. No more fucking birthday parties, kid. Sorry.

Meanwhile, the rotation diet seems to have had no effect; we are still losing foods at a regular rate. Pears and fish are the latest casualties. We're down to about 9 foods total that he can eat.

We're beginning the process of getting certain things documented (blood tests and whatnot) so the insurance company will cover the elemental formula for him. The blood tests will also hopefully give us a clue as to which particular steroids or anti-inflammatories he might respond best to. He'll probably be on the liquid diet with his sister by Thanksgiving.

Pie 11-11-2009 04:16 PM

:( I'm so sorry to hear this, Clod. What a let-down!

limey 11-11-2009 04:30 PM

So sorry Clod. How awful for you.

kerosene 11-11-2009 05:49 PM

Oh, Clod! And you have worked so hard. :( I am sorry. I wish I had better words of comfort, but I hope he heals quickly.

Griff 11-11-2009 05:51 PM

Sorry Clod.

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