My Kid is a Damn Nutter

[Clodfobble]

Today has been pretty sucky. But that might actually be a good thing.

As with any medical condition that's not very well understood, there are a ton of "alternative therapies" with no medical studies to back them up. Some actually have medical studies to disprove them, and some are just really hard to test. One of the most popular alternative therapies is the Gluten-free, Casein-Free diet, which falls into the latter category: it's really hard to have a double-blind study, because parents can't pretend they don't know what their kid is eating from day to day, and usually the only way to quantify symptoms is by the parents' reports. There have been two major studies, but one showed a correlated reduction in autism symptoms, while the other showed no correlation. Anecdotal evidence on the web seems to indicate in general that it either works astoundingly great, or doesn't work at all--which is reasonable; there are so many forms of spectrum disorders it's not hard to believe there could be different causes for different types. At any rate, it's widely conceded that the diet can't hurt you, so doctors will tell you to try it if you feel like it.

ANYWAY. The theory behind it is that the kid is unable to properly digest gluten (wheat), casein (milk), or both, and the result of partial-digestion is a peptide which, if it were to get out of the intestines, through the bloodstream, and into the brain, would function exactly like an opioid: i.e., autistic kids are actually high as a kite on narcotics 24 hours a day. The thing that struck me when reading the vast amounts of glowing anecdotal evidence ("my kid started the GFCF diet and suddenly began talking for the first time three days later, was potty-trained a week later, was diagnosed as no longer having autism six months later, etc.") was that, just like all opioids, these peptides would be highly addictive--and one of the hallmarks of children who had responded well to the diet was that they utterly craved the offending foods.

Minifob's diet is maybe as much as 50% dairy. He wants 3-4 different kinds of dairy at every meal, and it's always had to be the bargaining element: 'you can only have more cheese after you eat some more X.' I can't think of a single dairy product he has ever rejected.

So we went cold turkey on Saturday. Well, almost--milk hides in freaking everything, and in the process of figuring out which baked goods he can't have (answer: most of them) I forgot to realize that, duh, M&Ms are milk chocolate, and he gets those as a reward for having dry diapers. So he actually had one each on Saturday and Sunday before Mr. Clod pointed out (politely) that I'm retarded.

Sunday morning, 24 hours into (almost) detox, he actually said to me, "No ma'am, no banana," which is significant. No ma'am is what I say to his sister, and for him to A.) realize it could apply to someone other than her, and B.) choose to insert this extra phrase when he's already quite familiar with just saying "no banana" is a big deal. But maybe he was gearing up to saying it anyway though, he has definitely been using more words since going to therapy...

Sunday night he started getting edgy, and today he's been a nutball. In theory, that's actually another good sign, because there's supposed to be a withdrawal period. He hasn't gotten the shakes or anything , but he does lay on the floor and ferociously scream when I tell him (for the hundredth time) that he can't have any cheese. And his general twitchiness notwithstanding, I'm pretty sure he said this morning, "This is a red spoon." He always identifies his spoon color, but the words "this is a" have never come out of his mouth before.

So. In another couple of days there should either be much more visible progress, or I'll be forced to admit that I've been seeing what I wanted to see for the last two days. I'll tell you this: while it would obviously be the greatest thing in the world to have discovered a magical switch that will suddenly clear his brain and give him an unobstructed path back to normalcy, a totally dairy-free diet is freaking hard to maintain. We basically can't take him to any restaurants if we're going to stick with this. On the other hand, it's not as hard as a dairy and gluten-free diet, so I'll be grateful if we don't have to go the extra mile and remove the second half from his diet as well.

Also: cheese and yogurt "substitutes" are the nastiest things on the planet. Not only did Minifob not want to eat them, I couldn't even stand the smell of them in the kitchen myself.

[Griff]

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]

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]

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]

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]

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]

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]

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]

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.
Son: Kay. WE DAH FIGAH OUT BNOO'S CNOOS CUZ BE NARY SMAHT!!!
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 it...to 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]

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

Good work, CF.

[Trilby]

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

[Clodfobble]

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]

Originally Posted by Clodfobble

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...

[jinx]

Originally Posted by Clodfobble

Why does my turkey lunchmeat need to have wheat in it, you cheap additive-filling-space-wasting bastards?

I feel your pain, having had to eliminate dairy (casein and whey, not just lactose) from our diets when Ripley was born. And Pie is right on, you have to cook from scratch, eat simple/whole foods, and asian foods. It takes a while to get used to (we ate carrot sticks and lentils constantly until we got the hang of things) but then becomes normal. You'll all get healthier too.

[Cloud]

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