My Kid is a Damn Nutter

[BigV]

Touche'.

[Clodfobble]

The American Academy of Pediatrics has pulled a complete about-face this month, releasing a 200-page special supplement on medical treatment for autism in the November issue of Pediatrics. Only the first part is available online so far:

Despite the magnitude of these issues, potential GI problems are not routinely considered in ASD evaluations. This likely reflects several factors, including variability in reported rates of GI disorders, controversies regarding the relationship between GI symptoms and the putative causes of autism, the limited verbal capacity of many ASD patients, and the lack of recognition by clinicians that certain behavioral manifestations in children with ASDs are indicators of GI problems (eg, pain, discomfort, or nausea).4–10

Biomedical doctors who have access to the entire article have posted other potent excerpts online:

“Gut-brain connection, immune function, and genome-microbiome interaction.”

“Increasingly, evidence supports a combination of changes in gut microflora, intestinal permeability, inappropriate immune response, activation of specific metabolic pathways, and behavioral changes.”

“Endoscopic analyses of children with ASD and GI symptoms have revealed the presence of a subtle, diffuse inflammation of the intestinal tract.”

“Autoimmune responses in children with ASDs and a familial history of autoimmunity have been reported.”

“Autoantibodies could indicate the presence of inflammatory processes and/or an autoimmune component that could affect the integrity of the mucosal barrier and contribute to decreased mucosal barrier integrity.”

“Leaky gut.” [You guys don't understand, the AA-fucking-P actually used the phrase "leaky gut," in a sentence that didn't also involve the word charlatan. This is huge. Insane.]

“Nutritional status and nutrient intake are inextricably related in children with autism.”

A table on “Biomarkers as potential outcome measures” includes testing for: intestinal permeability to assess leaky gut, calprotectin for intestinal inflammation, celiac disease serology tests to assess gluten sensitivity, food allergy panels, organic acid testing for B12 or folate deficiency, and analysis of gut microbiota.

The messageboards and blogs have been lighting up like a Christmas tree one by one, as news of this has spread.

[Chocolatl]

Do you get to send them a big letter that says "I TOLD YOU SO!"?

What might this mean for the minifobs? Do you think new treatment plans might be developed or refined in the next few years?

[Clodfobble]

It won't mean anything for the fobs, to be honest. The treatments have been under active development for over 30 years in some cases. The parents who want them are able to seek out the right doctors to get them; it's a question of convincing people that this is the treatment path to take, and getting average, insurance-taking doctors to order the tests for those who can't afford to travel and pay out-of-pocket for the visit until the insurance can reimburse them.

It does mean our GI doctor's medical license is that much safer, and maybe we won't have to speak in code so much. Like right now, I can tell him that a medication "worked" because there was an improvement in cognition or other neurological symptoms, and we can base further decisions on that, but he will always throw in a quick "and stools were improved a little too, right?" so that he can put it in the file as if we are still treating solely an unrelated GI disease. Similarly, every single child he sees must receive a full scope before he will treat them, even though he knows with complete certainty what he will find. He needs the scope data to prove that each of his patients has a real GI disease, and the fact that they all also have autism can be written off as a curious sidenote, if need be. Perhaps in the future he will feel safe enough to treat patients right off the bat, without all the CYA. I don't know how close he is to publishing his more recent data (including our own biopsies and pill cam images,) but I'd like to see him get a Nobel prize.

The real place for improvement is in early detection. If they can figure out which biomarkers show up first, and what ranges indicate that worse things are likely in store, they could add them to the list of basic blood screenings that every newborn gets. I do think we could reach a time in as little as 5 years when every newborn has a stool culture done to examine their gut flora, and more refined probiotic prescriptions can be developed with the most therapeutic blend of species. (Of course, correcting the mother's diet would also go a long way towards correcting this problem before it starts, but let's be honest, she's just going to give her baby a probiotic supplement instead.)

[Sundae]

Mars' annual review last week.
First time I heard of his bowel problems.
Ongoing, says Mum.
She asked him on a Saturday when was the last time he had been, he said he had "felt something on Wednesday but was too busy playing" so he held it until the weekend.

I hadn't been aware of this previously. Not sure how this ties in with what you have experienced but he is definitely autistic (and in a more obvious way than Tiger) and also not on a restricted diet.

[Griff]

Its about time. Good to get the vindication though, eh?

[Clodfobble]

Sundae - constipation is just as bad of a GI symptom as diarrhea. He should be going once every day, and the further he waits in between, the worse it is. (One of the sad things is that many parents of autistic kids don't even know how bad off their kids are because they themselves have less than ideal digestion, and assume it must be normal.)

Originally Posted by Griff

Its about time. Good to get the vindication though, eh?

It'll be better when they vindicate Wakefield.

[xoxoxoBruce]

When will the silly AA of P learn not to question Clodfobble's brain?

[Clodfobble]

And now, the sad conversations and regrets have to start. A mom I've known on the Autism Society (not biomedical) board for four years now emailed me yesterday, and said that now that "the science is in" she's ready to try out one of these diet things. "Now I know your secret! LOL!" she says.

Yeah, I was pretty fucking loudmouthed about my secret this whole time, as you can imagine. The whole email had that same outwardly-laughing-inwardly-sobbing vibe, because her son is 8 now. The window is pretty much closed. He will make dramatic improvement, yes. But she can't expect a miracle at this point, and she knows that.

Still, her email was easier to read and respond to than the handful of public posts from older parents basically saying, "fuck it, it's too late for us now anyway. Who's up for McDonald's, amiright?"

[limey]

Clod, you tried. You explained. They did not listen. Sins of the parents being visited on innocent children, I know, but try not to take it too hard.

[Griff]

It is very hard for parents to ignore the "experts", so when experts are married to an idea that is bound up in ego or profit the child isn't served. That said, parents need to know that this is the fight of a life and in such a fight no weapon should be set aside.

[Clodfobble]

I am tired.

Kids had their two-year colonoscopies yesterday. Minifobette's internals are significantly better. Not completely in remission, but at least halfway there, maybe more.

Minifob's, on the other hand, can only generously be called as bad as they were before. He has somewhat less inflammation in places, but also some new ulcers that were never there before, as well as new damage in his esophagus which was unaffected last time we looked at it two years ago. The damage has moved, certainly; whether it is greater than before or just different is hard to quantify.

The thing is, I know for certain that if we had happened to scope him one year ago, he would have been comparable to his sister. Entocort is his miracle drug, but we had to go off it a year ago in favor of immune suppressors which wouldn't have as many long term side effects as the Entocort, and things have been sliding downward ever since. And not just behaviorally, we're talking real Flowers for Algernon shit here: there are major things that he could do the first few months in Kindergarten that he can't do anymore. Last year he never even met his nominally-assigned special ed resource teacher. This year he was pulled out of class at least once a week, either because he couldn't cope or because the gen. ed. teacher couldn't cope with him. This part isn't news, of course, we've been living it, and I honestly went in there yesterday expecting his current gut situation to be roughly equivalent to what it was two years ago. I wasn't prepared for the possibility of it being worse, though. Losing ground sucks. Ulcers are bad.

Anyway. Just venting a bit. I'm not upset about it, just tired. I went back and reviewed my notebooks from a year ago, looking for any other things we were doing differently back then besides the Entocort. I did find a few things with some small promise, so I'll be making adjustments accordingly, on the off-chance that they were contributing more than we thought they were at the time. In a few weeks we'll have the followup with the GI doctor and find out what he wants to change, if there's anything we can change. I know there's at least one other immune suppressor option that we might be able to switch to, so maybe it will work better. Maybe he'll want to put him on daily pain meds--these also have their share of long-term side effects, but Minifob did do fantastic right after he got an ibuprofen IV in the hospital last March. I dunno.

But Minifobette is rocking it, at least. She sat there plateaued for so long, I suppose it's only fair that she finally have her day to shine in the sun while her brother lags.

[glatt]

I can only imagine how tired you must be. You really impress me with how you keep on chugging along. I've said it before, but you are an amazing parent. Your kids are so fortunate to have you.

[Pete Zicato]

@Clod

Are there any biologicals that might help? CD and UC types have Remicaid and Humira. Anything like that for Minifob?

[Clodfobble]

Recurring IV treatments are an option, but obviously not preferable for a 7-year-old. There is also the issue of getting insurance coverage for them, because it can be proven that what he has is definitively not Crohn's. It's a mostly undescribed thing which only barely exists in the medical literature--at least without Andrew Wakefield's name attached--as of early this year. Insurance may not want to pay $20,000 a year for "unspecified enterocolitis," until enough studies have proven that it responds to the drugs the same as other autoimmune conditions.

We were actually on a path to getting him covered for generic IVIG a couple years ago, but then the only local clinic that would do it based on an outside doctor's prescription stopped offering it. You have to get their internal doctor to order it, and the internal doctors know nothing about autism.