Touche'.

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:

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

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

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?

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.)

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.

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

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.)

It'll be better when they vindicate Wakefield.

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

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?"

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.

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.

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.

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.

@Clod

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

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.

Aye. There's the rub.

Remicaid is humongously expensive. My gastro convinced the HMO it was pay now or pay more later.

Has mini seen a gastro?

Sorry to hear this, Clod. It's a long road. I still look for possibilities/assistance/solutions for my autistic spectrum son. I'm glad there are a few things you've picked up from your notebook to focus on, though.

Yeah, otherwise that guy who gave him a colonoscopy yesterday would have a lot of explaining to do. :)

:( Is there somebody we can kill or something?

Nah. I'm doing okay, really. It's just one of those things that can never be strictly forward progress, and we have to A.) accept that, and B.) stay vigilant.

I'd say I stay sane with the help of wine, but actually, it's cookies.:kettle: (Closest thing I could find to a cookie icon. Some might say the donut is closer, but I don't like donuts. I do, however, like tea.)

I am very sad, Clodfobble.

So, I finally took the plunge.

Remember back when I went to the hospital with meningitis and they gave me a shit ton of Vancomycin until they could confirm that it wasn't bacterial after all? Well, my digestion has been even more screwed up than usual since then, though I always take an intense dose of probiotics every morning. Meanwhile, the kids have been expanding their diets more and more as they are able to tolerate new things, and we are right about at that point where I could start making one meal for the whole family again, if we were willing to.

So I went ahead and started eating on my kids' special diet. It's been one week now, and I feel fucking fantastic. The cravings for sugar/carbs were moderately intense for the first two days, but I just kept myself distracted and out of the kitchen at all costs. If I got bored, I knew I would eat. Watched several marathon sessions of Breaking Bad to run down the hours.

The evening of the second day and all through the third, I farted constantly, at least once every few minutes the entire time. On the fourth day I realized that I hadn't taken an afternoon nap since I'd started, hadn't even yawned. Also, the constant cycle of depressive thoughts in the background was magically gone. Meanwhile, digestive symptoms are much improved, though definitely not perfect yet.

I'll admit, I don't know yet if I'm going to stay hardcore on it forever. But I'm finding it a lot easier than I thought I would, after those first two rough days.

That's great, cf.

That is really cool. I should probably get serious about my eating again.

Yeah, eating a mostly non-processed, whole food diet is essential for good health...mental and physical. It does take a while to eliminate all the 'junk' , but once you do, you don't really miss it all that much. And really, you can still partake, just not as often and in much smaller doses.

It's so frustrating how predictable our roller coaster is.

The GI doc said Minifob could go back on Entocort. Yay! Massive improvement across the board. Everyone is happy.

Minifob finished his 3 months of Entocort. Boo! Everyone is sad. Within just two days his teacher emailed me, asking for a conference about major behavioral shifts.


We are very close to considering anxiety meds. It's so frustrating because we know, without a doubt, that the symptoms are because of his gut. But the meds for his gut cause major long-term problems, and the doc won't let us stay on them. We're not even getting to put a bandaid on the symptoms at tier 1, we're having to do it up at tier 2.

Anyone here have any experience with Clonidine? We haven't had an appointment with the psych yet, but that's one of the frontrunners among my friends with kids on the spectrum.

Clodfobble, I am a COMPLETE AMATEUR in this area, but I wonder if you've done any reading about the idea of a poop transplant. Not a joke. I'll look for a reputable cite, but in the meantime, I'm interested in your opinion.

eta: found and added link that I'd read.

Clonidine was one of the few meds that weren't tried with my second son. I'm sorry things are a roller-coaster - it does seem to go that way. But Entocort does involve the risks your doc is concerned about. Besides the bone and joint and other issues, it's an immunosuppressant. I hope you get some good suggestions from the psych visit.

Not worried about the immunosuppressive aspect, since the med the doc would rather he stay on long-term instead is methotrexate. But the bone and joint thing, yeah, that's the thing he keeps warning me about.

V, we have not only considered a fecal transplant, I have a donor sample in my freezer (closed within several layers of packaging.) I am scared to use it though, because there is just no telling what is in it. The doctor is on favor of them in general, but he warned there could also be a major adverse immune response.

Having it done at a medical facility would allow for lab culture of the sample to rule out C. diff, pathogenic enterococci, parasites, Giardia, etc. prior to the actual procedure. I wouldn't use an untested sample.

Sorry about the roller coaster Clod. Any new meds on the horizon?

Do you know the donor? Perhaps it's you or a member of your family. The reason I ask is that I also recently heard of a way to scan the *ahem* contents of the sample. There's an outfit called the American Gut Project (you can't really make all this stuff up). For $99 they'll scan the sample and give you a report. Here's the story I heard on NPR. It went into great detail about the kinds of flora found and the relative proportions, etc. I don't know what kinds of unknowns you're worried about, but perhaps this link could help you reduce the number of unknowns.

As for the major adverse immune response, I am in no position to argue with your doctor through you. But this thread's *always* been about gut flora and these ideas I hear about always remind me of you and the little Fobs. There was great skepticism on the part of some patients and some doctors, unsurprisingly. But for those that had success, their testimonials border on rapturous.

Lots of gut talk out there. I saw this earlier on rheumatoid arthritis.

Can't be done at a medical facility anymore. After the procedure gained a little attention, the FDA made a quick ruling maybe 6-12 months ago that donor stool was "medicine" and therefore under a whole different set of rules. Effectively the only way the doctor can do it right now is if they use their own stool, and that opens them up to a whole different realm of liability. This isn't permanent, it's just a temporary stay while they figure out how they're going to regulate this thing, but for right now it's do-it-yourself, or nothing.

It is a member of my family, but by marriage only. I figured that anyone connected to my genes was suspect. Too much history of digestive disease on all sides of our families. Plus, she was born in a foreign country and ate a non-Western diet for the first part of her life, so her bacteria are in theory going to be much more varied and healthy. I appreciate the link greatly; so far the only places I knew to get the stool tested required a doctor's prescription, which would require my relative to become a patient of that doctor, and the doctor to be on board with what we were doing, etc. I will send a sample off to them, so at least I will know for sure if I can rule it out or keep hanging onto it.

Nothing that we know of, other than the untested gamut of psych meds. Potentially we could switch from Methotrexate to 6MP, but there's no reason to think it will work any better, they function very similarly and the only reason people choose one over the other is if they are experiencing significant side effects for whatever reason.

There's this other insane thing I've started doing, because I'm willing to try anything at this point, and that's re-capping all his meds. Most pills come in a plant cellulose capsule, which is a polysaccharide and thus not allowed on his diet, but the general agreement is that the benefit of the meds outweighs the detriment of the capsule. But he takes an awful lot of pills when you add them all up. And they DO make gelatin capsules that you can buy in bags of 1000 online for very cheap. So I opened all his pills this week and poured the contents into empty gelatin capsules. Won't really know if it's helping for another few days, but it's a damn lot of work.

Ah, I read through it a bit more. $99 is just for bacteria (though very thorough in that regard.) If you want to expand the information to include potential parasites, viruses, or fungal infections, it's $2,500.

Update from the doc appointment today: we are going to try switching to 6MP after all. This is an especially good time to do it because for years now, one lab called Prometheus has held the patent on the blood test to determine how much of the medication is circulating in your system, which is necessary to safely use the drug. They have been bastards and were charging $700ish for the test, which often must be done several months in a row and was not usually covered by insurance. But apparently over the summer one of the unpublicized cases the Supreme Court heard was the Mayo Clinic suing Prometheus over this monopolizing behavior, and the Mayo Clinic won. So now you can get the test done for a reasonable fee and covered by insurance. This wasn't something that was keeping us off the drug prior to this, but it does make it easier to try now.

But in less optimistic news, Minifob has again lost weight. The doctor said we are now officially on the lookout for wasting syndrome. He was quick to say that Minifob in no way qualifies for the diagnosis yet, but he is nonetheless falling further and further behind the standard growth chart, despite taking in 150% of the daily calories a 7-year-old is supposed to consume, and it is especially concerning given that he just came off three months of steroids and should have been aggressively gaining, if anything.

But he said there have been some patients that start taking 6MP and just sprout like a weed, so with any luck that will be us too.

That I pretty alarming.

Good luck with the 6MP. I hope he grows like a weed.

We feel your pain with the weightloss :( Goalie Boy weighed less than at his growth eval 4 months ago. but he eats like your standard teenage swimmer/hockey player -it's not reduced proportional to his size. He can pack away a whole pizza as a snack :(

Thought I'd tuck this in here. It seems mainstream science is catching up to cellar science.

I assume you has seen this, but just in case not....

http://time.com/3683475/autism-siblings-study/

Wondering how it's all going with you guys.

I'm headed off to train for my new job on Weds, and I'm told the woman I will be working with is a whizz at gluten -free baking -learned she had celiacs/similar so went to some sort of chef school to learn how to bake but insisted on making everything gluten-free. Will report back if I learn anything interesting.

Yeah, I saw that. One step closer to them acknowledging that the genetic damage comes after conception, and is thus... dun dun dun... environmental.

As for how it's all going with us, it's going fantastic. "They say" (i.e., the general anecdotal reports on messageboards) that SCD takes 1-2 years for ulcerative colitis, 2-3 years for Crohn's, and 3-4 years for autism to achieve complete remission. Minifobette is a couple weeks shy of her 4 year anniversary, while Minifob is close to 3, but both have had a few small accidental exposures along the way.

At their last scope (18 months ago,) Minifobette was about 85% in remission, and Minifob had shown only minimal improvement, with outward symptoms to match in both. Nowadays Minifobette is outwardly recovered, with a few slight speech odditites as if she learned English as a second language (meanwhile, however, her teachers say she is picking up Spanish at a ridiculous rate, indeed as if she had already learned a second language and was working on her third.)

Minifob, on the other hand, has been massively improved for about 3 weeks now, since starting a new med that focuses on GI histamine dumping. Haven't had a single meltdown in those three weeks, and he has finally started making some progress on controlling his overwhelming stutter.

Just today in fact, my plan is to email his doctor and tell him that we want to try weaning off the immune suppressor and see if he can hold steady with this new med instead. We shall see.

oooh.... I remember reading something about drumming and rhythmic activities helping people overcome stutters -is it coincidental that minifob took up the drums or not?

And now I type this, I'm reminded of the kid -Musharaf- in Educating Yorkshire who taps out the rhythm of the words with his hand to help

Not sure how quickly this particular clip gets to the appropriate point

Coincidental--he's only had one lesson, last Wednesday, and the stutter improvements started a few weeks before that. He does still stutter all the time, it's just that now when we give him a reminder to "chunk" the sentence, he can actually stop and do that, whereas before he would try and still get stuck by the second or third word.

There's been some really interesting work on teaching brain injured people to speak again using song lyrics instead of sentences. They can't say "I want soup for lunch" but they can sing it. The brain is so weird.

There have been some utterly amazing things accomplished for TBI's with music as well. Yes, some with stuttering too. Many with Aphasia have been helped by music therapy also.
Music is how we knew Daniel started talking after his surgery. The radio was playing a song he knew and he started singing it. Before that it was only a word or two here or there.

Another vote for "The brain is so weird." here. My Mom had a stroke years ago, a serious stroke and has been paralyzed on her right side since. Also, she has aphasia, rendering her vocabulary to "gunna gunna" and every emotional tone and inflection possible for that word. But no actual english words.

Surprisingly, she can hum, "sing" (aaahhh, aah, aaaaahhhhh) songs, no lyrics, but she can definitely carry a tune. The weirdness of her brain has been revealed by the removal of the part that granted her speech.

ain't that the truth

word

Mine isn't weird... it told me so, didn't you HAL. :blush:

OMG.

YOU GUYS.


I wrote a memoir. Finished it last October, been querying agents ever since. The way the publishing industry works, you have to send a query letter first, which is equivalent to an elevator pitch, and only then will they decide if they're interested enough to ask for pages of the actual manuscript to read. After a total of 20 rejections and 18 non-responses, plus another 10 that are still within the "maybe we haven't officially ignored you yet but we're not telling" timeframe... someone finally asked for the manuscript! And not just anyone, but a big name at a major firm. Still, this was only one tiny step forward, since agents may actually only select as few as 1 out of 20 manuscripts they request.

Then yesterday morning, less than 12 hours after my super depressing night on the comedy stage, she emailed back to say she loved the book and wanted to represent it. Papers signed today. With any luck, a publisher will agree it's awesome, and you'll be able to find the saga of this thread in a real freaking bookstore in like... another 18 months, minimum.

For serious, I'm an author, y'all. (Almost.) Hell of a way to take the sting out of Tuesday night. :)

Wow. Clod! That's so frikkin awsome.

Will you sign my copy?

Dang! Way to go!

WTG!!!

I want my copy signed too! The rest of you punks can get in line, behind me.

I want a signed copy also. When your on your book tour.

Excellent, I'm sure it's a good read. :notworthy

Put the picture on the couch from college on the dust jacket. You'll sell a million.

Ha! "As you can see from this photo, the psychological problems go back at least one generation..."

Thanks you guys. If I do get to do some kind of signing tour someday, you better believe I will be calling out dwellars in every city I get to go to.

Tour? I suppose it would be impossible to put more of a strain on your marriage at this point. ;)