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Griff 02-17-2009 05:55 AM

Good luck Clod. How are his bowel movements generally? We had several kids on that diet when I was working with this population. I don't have any info on it though both because we were kept blind, since we were taking data, and possibly because Dr. Romancyck has a great deal of ego caught up in the B Mod thing so even if one of the Grad students wanted to run such a study it might not see the light of day. We had one kid that I wished they'd tried it on since his bms were horrible and to me it seemed like he had digestive pain.

Pie 02-17-2009 07:28 AM

Clod, I love your approach. You look for evidence-based therapy & try out the low-risk possibilities. Best of luck keeping him away from the moo-heroin.

Is there any information on which dairy peptide might be responsible?

Clodfobble 02-17-2009 08:13 AM


Originally Posted by Pie
Is there any information on which dairy peptide might be responsible?

I don't know. I know it's the casein I'm supposed to avoid, which is a pain in the ass because even things marked "non-dairy" are actually only missing the lactose, they still have casein in them.

Hi bowel movements have been very soft his whole life. The number of truly solid bowel movements he's ever had is less than ten total.

Perry Winkle 02-17-2009 10:16 AM

Sometimes small changes effect great results. The human mind and body aren't quite as well understood as the medical world would like you to believe.

My story is just anecdotal but might lend you some hope of finding a solution, even if this diet doesn't pan out. Super short, condensed version: I was hugely overweight and so mentally ill that I'd pretty much been written off. I changed my diet and started getting a little bit of exercise. Within 6 months I was off of the majority of the meds I had been on and was about to finish high school (something my parents and doctors thought I would be incapable of). Now, 7-8 years later I am in excellent physical and mental shape, have not only finished undergrad but also have a graduate degree and have done pretty well in the workplace.

So anyway, a little conscious change and experimentation (your's at this point) coupled with a human's natural drive to live (your son's) can do wonders.

LabRat 02-17-2009 10:57 AM

I remember watching Jenny McCarthy quite awhile ago speaking on Larry King Live about how a change in diet helped her autistic son. She had just published a book about it. Louder Than Words is the title. I never got a chance to read the book, but thought that it was very interesting.

One of the things that struck deep with me was after he was 'cured' she said he would say to her "remember when I was shy??" He was aware of the differences in his behavior, but couldn't control it.

Clodfobble 02-17-2009 01:14 PM

Many of the positive GFCF anecdotes mentioned that their child could now tell immediately if they accidentally ate the wrong food. One boy took a bite of the wrong cookie, and moments later told his mother, "The bad person is inside of me again."

Minifob bawled today when I told him again that he couldn't have any yogurt. Not a tantrum, he just sobbed. It broke my heart.

footfootfoot 02-17-2009 01:35 PM

Clod, you are an awesome mom. I had a long response written last night and then we had a meltdown and it got lost in the fallout. I think the hardest part is almost over. "They" say the more foods you introduce your child to at a young age, the wider their tastes will be later.

There are definite food issues here in this house and I am having a hard time getting my wife to accept that. She keeps thinking the inch's perennial congestion is due to the need to vacuum.

more later gotta go

OnyxCougar 02-17-2009 01:58 PM

I fought for YEARS with doctors and teachers/special ed admins about my son. My sister is a NeuroPsychologist (when my son was little she hadn't gotten her degree yet). She told me immediately that he was displaying Autistic symptoms. He was 3. Three Pediatricians REFUSED to test him before age 5, and blamed me for his behavior.

This is an example of behavior at 3:
It is 11:45am.

Son: Mom. Mom. Mom. Momomomom. MoooOoooom!
Me: What?
Son: (slurring, muffled speech due to multiple ear infections) Lunch?
Me: Yes, I'll make you lunch at twelve o'clock, after Blues Clues.
Son: Bnoo's Cnoos? (breaking into full voice singing) WE DAH FIGAH OUT BNOO'S CNOOS CUZ BE NARY SMAHT!!!
Me: Yes, we are. Go watch Blue.
Son: (runs [on his tip toes] away) HE DA MAIL, IT NEBA FAIL...
Me: (looks at my watch. 11:47.)
Son: (runs back up to me) Mom. Mom. MooooooooM Mommy. Mom. Mommmma. Mom!! MOMOMOMOMOMOMOOM!
Me: What?
Son: I some lunch.
Me: Yes, after Blue's Clues. At twelve.
Son: Twelb?
Me: Yes, on the clock, one two dotdot oh oh.
Son: oh oh?
Me: Yes, after Blue's Clues. oh oh.
Son: Benut Bunner?
Me: Yes, I'll make Peanut Butter and Jelly.
Son: oh oh?
Me: Yes, when Blue's Clues is over. A few minutes.
Me: *sigh*

And the way he told me he wanted to watch Star Trek: The Next Generation was to sing the intro theme song.

We moved back to the states and got him into the Pre-K program, with the label of "Emotional Disturbance". Still no doc would tell us what we already knew: Autism. Even his teachers were telling me: this kid is Autistic. Echolalia, aversion to change, extreme difficulty transitioning to new tasks, tactile obsession (I made a nylon shirt for myself while I was pregnant, and it was his shirt. He did NOTHING without his shirt. Full on meltdown without the shirt. He would do this thing...put the shirt between his thumb and index finger and rub comfort himself. Til he was 6.

Brushing teeth was asking for fingers to be bit off. I'm not kidding. He could not *tolerate* the feel of the toothbrush rubbing against his teeth.

By 10, after 6 years of occupational therapy, physical therapy, speech therapy and weekly behavior therapy, he was still in special ed, but his teachers were saying that he was too smart to be in special ed, but when trying to transition into regular classes, his behavior was such that it was completly disrupting all the other students.

At 13, we finally got a doctor to diagnose him as High Functioning Austism *and* Asperger's. There was a pilot program starting in our county led by NC-Chapel Hill called TEACCH, and they were starting a program for kids like mine: HFA/Aspies. Full regular classroom integration but each student has a "shadow" in the class with them, making sure they stay on task, don't run out of the room (which mine was known for), writing down homework, etc. Then one of the class periods was HFA class, where they help with the homework, and teach social skills, emotion identification, etc. We waited a year on the waiting list, and he got in the program in the middle of 8th grade. Only one school (elem, middle, high) in the county has an HFA class, so he gets to ride a special (not short) bus, picks up at the driveway, and gets met at the bus by his shadow.

Now at 16 (he just turned last week, I'm surprised I've stayed as sane as I have this long), He's a Freshman, and what used to be Cs, Ds, and Fs (not because he didn't know the material, but because he couldn't focus on the tests or write down his thoughts) he's getting A's and B's consistently.

He's still obviously "off" in social situations (he doesn't know what is appropraite to say and around whom you shouldn't say it) and he's not shy at all. He still does the "martial arts dance" at the end of the driveway waiting for the bus, and sings all the time. Even under threat of "I will send you to your room if you don't stop humming" (he HATES being by himself) he will still do it (because he doesn't realize he's doing it most of the time).

He's trying to find out what his humor is. Unfortunately, he's chosen to emulate mine, but doesn't really understand puns and non-literal ideas, so it's not going so well.

He's 6'2", and pushing 170, and shows no signs of stopping soon. I just bought him a pair of size 13 shoes. He's eating me out of house and hearth.

And although I'm terribly worried about whether he's ever going to be able to live on his own, or how he's going to function at a job (which he's expressed interest in getting), and about how much he's going to get hurt becasue he's SO gullible and a smart (mean) girl will be able to totally roll him...

But I can't imagine him any other way.

All this whole long thing was basically to say: I know what having a special needs kid is like...and at times it feels like you're going to tear both you and your kid's hair out. You'll cry and laugh and try new things and stay up on the research and fight and kick every step of the way. Sometimes you'll win, and sometimes you give up, for a little while (that's usually the crying part). Then you take a deep breath and start over.

I'm here if you need me, I have a great ear and a huge shoulder.

Hang in there, sweetie!

Beestie 02-17-2009 05:54 PM

Gee, a treatment plan that doesn't involve any meds. No wonder the doctors never heard of it.

Good work, CF.

Trilby 02-19-2009 08:51 AM

Clod---you are a wonderful mother. I admire you.

Clodfobble 02-19-2009 03:46 PM

Ugh. He's been weird. Some good bits, some worse-than-usual bits. Then yesterday he swung from great to terrible immediately after eating lunch (a sandwich on wheat bread.) I started to wonder, and realized I would never really be able to stop wondering... so fuck it. This diet is so hard already, we might as well just go full GFCF. Rip the bandaid off.

So far he's eaten a whole lot of refried beans on corn tostadas, and several varieties of fruit. Turned down the fake-Cheerios in rice milk after one bite, wouldn't even take a bite of the peanut butter sandwich made with gluten-free bread, which I baked my damn self after he went to bed last night. Oh, and Mr. Clod complained about the smell of the bread--not that it was bad, mind you, just "weird." He's since instant messaged me to let me know he can somehow still smell it at work and he thinks he's going insane. Yeah, me too, buddy.

But in the bad-news-that's-good-news department, Minifob was nice and grumpy about his new diet for the Early Childhood Intervention evaluation today, so he qualifies for "services." They want to do a bunch of stuff with pictures, some of which I'm optimistic about, like a posterboard with pictures of all the different foods he's allowed to eat. That will help me as much as him. Gluten is in fucking everything. Why does my turkey lunchmeat need to have wheat in it, you cheap additive-filling-space-wasting bastards?

Pie 02-19-2009 04:01 PM


Originally Posted by Clodfobble (Post 536429)
Gluten is in fucking everything. Why does my turkey lunchmeat need to have wheat in it, you cheap additive-filling-space-wasting bastards?

You're going to be doing a lot of cooking-from-scratch.
Look into foods from Asia -- many cuisines are riced-based. Just watch out for the sauces (soy sauce is notorious for having wheat in it!)
If you're interested, I can hook you up with some non-wheat containing fairly easy recipes from south India. PM me...

Cloud 02-19-2009 05:14 PM

wow. all this is making me count my lucky stars, and wishing I had better words, better comfort, better ideas for you.

Aliantha 02-19-2009 05:25 PM

I'm with you there Cloud. I've wanted to say something, but really just don't have any of the right words. I don't really have any decent advice for Clod and co, but I suspect they're getting plenty anyway.

I will say that gluten free is a lot easier now than it was even just 5 years ago though. A couple of my cousins have GF diets and they don't do too badly.

My best suggestion is to try health food and organic stores. You'll get plenty of GF alternatives there.

LabRat 02-23-2009 02:26 PM

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This weekend I was browsing the new non-fiction in our local library and came across this book written by a couple of experts in the field. When Your Child has Aspergers. I read it this weekend, and it seems to be a great resource, especially for friends and family. Concise and easy to understand.

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