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Queen of the Ryche 04-08-2009 10:58 AM

Wow, clod! What are the odds? I am so pleased that the world is finally realizing there are people out there with DAILY special needs. How is the little Fob? And how are you?

Jill 04-11-2009 04:52 PM

I commend you for all the work you're doing to help your son.

I'd like to offer a food option that you may not have discovered in your quest for gluten-free foods -- kasha, aka buckwheat groats.

  • Buckwheat is grown totally without pesticides or herbicides.
  • Buckwheat is a fruit and unrelated to wheat. . .
  • Buckwheat products are safe for celiac sufferers.
. . .

For people who struggle with wheat allergies and gluten intolerance, buckwheat is ideal. It has plenty of protein and B vitamins and is rich in phosphorus, potassium, iron, and calcium.

. . .

More here.
And especially since you've taken him off milk products, another great aspect of kasha is that, [r]ich in potassium and calcium, buckwheat works with sodium to regulate the body's waste balance and builds and maintains strong bones and teeth.

Kasha is really quick and easy to cook, has a wonderful nutty flavor and smells like popcorn when you're cooking it, so it might really appeal to kids. I don't follow the directions on the box, but have created my own kasha pilaf recipe, though if your kids have any objections to onions and/or mushrooms, it's easy to just leave those things out and make just plain kasha. There are more recipes here.

Wishing you all the best!

Clodfobble 04-14-2009 03:02 PM

Today was Minifob's evaluation with the school district, and it has been officially recommended that he be placed in the PPCD class next August (he's not eligible until he turns three, which is 2 days before school lets out for the summer.) But the evaluators did note a significant improvement from when they saw him just 2 months ago, pre-diet. Now I need to go meet the teacher and visit the classroom, to make sure it's a place I'm actually willing to put him 4 hours a day, 5 days a week.

In the meantime, I've heard a disappointing anecdote from my Early Childhood Intervention coordinator about Thoughtful House, the specialty clinic we're on the waiting list for. She says she had a family with an older autistic child who had begun experimenting with some enzymes and nutritional supplements on their own until they could finally get their appointment. They had some success, and sure enough, when they saw the doctor he confirmed that these treatments were indicated by the test results, and from now on they could purchase said supplements out in the lobby. The parents pointed out that the ones they'd been using listed identical ingredients to the ones in the lobby, and cost $30 instead of $200. The doctor told them that they could not vouch for supplements from other distributors, and would not treat him at all unless he was on their own brand of products. :eyebrow: I'm going to keep my initial phone appointment and see if perhaps there was a misunderstanding, or maybe these parents were talking about a single specific drug rather than generic vitamins, but I'm extremely wary.

This is one of the things that has pissed me off from the very beginning of all this research: fucking everyone is selling something, and it completely undermines their credibility. Oh yes, the GFCF diet works wonders--just buy our $80 instructional DVD, and order our wide variety of gluten-free products shipped right to your door... it's like, I don't know, the medical community should research this shit, so they can actually recommend legitimate treatments to their patients, and the patients won't have to weed out information on their own from shysters on the internet. For the record, the GFCF diet has been no less than a miracle for us, my kid is leagues better now than he was even three weeks ago, and you don't have to pay me a goddamn thing to tell you so. I take every opportunity that I can to say it for free, in fact, because I think helping people is a good thing.

The good news is, I talked with his pediatrician yesterday at Minifobette's 1-year checkup, and she is supportive of the diet, if not as enthusiastic about it as I am. She also said she is able and willing to perform some of the basic testing that is part of the biomedical protocol--for example, testing for yeast in the stool. If she finds yeast, she can treat it with an anti-fungal, regardless of whether she actually believes it is contributing to his autistic symptoms. I couldn't name any of the other blood tests off the top of my head, but she said to bring a list of the tests/treatments to his next appointment, and she'll happily proceed through it until she gets to a test she doesn't know how to do or a treatment she can't get on board with.

Pico and ME 04-14-2009 03:19 PM

Sounds like you have a great doc there, Im sure that helps.

xoxoxoBruce 04-15-2009 02:22 AM


Originally Posted by Clodfobble (Post 556290)
snip~ For the record, the GFCF diet has been no less than a miracle for us, my kid is leagues better now than he was even three weeks ago, and you don't have to pay me a goddamn thing to tell you so. I take every opportunity that I can to say it for free, in fact, because I think helping people is a good thing.

This thread, thanks to all your hard work, has become a light in the forest for other parents desperately looking for solid information.

snip~ I couldn't name any of the other blood tests off the top of my head, but she said to bring a list of the tests/treatments to his next appointment, and she'll happily proceed through it until she gets to a test she doesn't know how to do or a treatment she can't get on board with.
Cool, what a great help to have someone with not only the knowledge but the power to actually help.

Griff 04-15-2009 06:48 AM

Good work Clod! Scammers are pretty thick in the autism community and given the individual differences you're probably best off being the expert on your kid.

Clodfobble 04-19-2009 04:10 PM

A humorous anecdote in the life of an autistic kid:

At the rehab center where he has his occupational therapy, the administration has apparently decided to put cameras throughout the building. Maybe because they want to safeguard against sexual harassment suits or something, with those physical therapists touching people all over and whatnot... but at any rate, all the occupational therapists were letting us know that there's a slight chance we'll be getting a call at some point from some uninformed administrator reviewing the tapes, and could we please tell them that yes, our child normally screams in horror when people come near him, and when the therapist picks him up and flings him into a pile of beanbags, it's not torture, it's therapeutic.

xoxoxoBruce 04-19-2009 04:18 PM

Ha ha ha, that's great. Politically Correct clashes with real world solutions.

monster 04-19-2009 05:04 PM

there was an item on the news while we were away about a couple who's autistic son was "cured" by their aggressive early intervention and their refusal to give up. he had speech therapy, physical therapy and diet adjustments. hang in there, you're doing the best you can and it's not just a blip on the chart that you're already seeing benefits from your hard work.

Clodfobble 04-20-2009 01:26 PM

Here's another five families:

There are dozens, if not hundreds of recovery stories out there. The sad thing is, some of them have been out there since the early 90s, but no one bothered to listen until that airheaded harpie Jenny McCarthy demanded the spotlight about it. (And don't get me wrong, any publicity for the cause is probably a great thing in the end. She's just, ah, not the greatest spokesperson, you know? I've talked to some people who have actually been turned away from dietary interventions simply because she's the loudest voice pushing them right now.)

xoxoxoBruce 04-22-2009 01:47 AM

Thought this might interest you.

Clodfobble 04-22-2009 03:14 PM

Sibling rivalry
I alluded to this in a random comment in some other thread, but having become so thoroughly educated on the symptoms and causes of autism, we started noticing things about Minifob's little sister that we never would have thought twice about otherwise (and indeed, didn't think twice about back when it was Minifob exhibiting the exact same behaviors...) As a sibling, she has a 10-30% chance of being autistic herself, depending on who you ask.

When we put her on the diet alongside Minifob--out of necessity, because otherwise he would swipe her unsafe foods--nothing really happened. But she's still breastfeeding, and in the week leading up to her vaccination, I decided to go ahead and put myself on the GFCF diet, just on the off-chance that it might help her fight off the disease in some small way. And she totally changed. She became more talkative and more playful, while before she was our quiet "observer" baby. And she almost completely stopped doing this odd little gesture she does when she's around people she doesn't know, where she sticks her arm up beside her face to physically hide from their view. It's not like she was exhibiting symptoms before--she has good eye contact, she smiles and interacts, she points, she says a handful of words. But these are all things that Minifob did too. And given how she responded to the diet, we started doing some other food challenges along the lines of things we've already discovered Minifob has mild behavioral and digestive problems with (nothing as severe as the gluten/casein reaction, but it's apparently quite typical for autistic kids to have lesser allergies as well.) Sure enough, I can get completely undigested food to come out in her poop, just like he has when he eats the wrong foods. So at the very least, I am convinced she has similar digestive problems, whether or not they are ultimately bad enough to affect her neurologically. We're now experimenting with giving her 1/4 doses of his enzymes to see if she improves the way he has.

At least group therapy sessions do offer discounts. I saw a special on Discovery awhile back that featured a woman with six autistic kids. What kind of person does it take to say, "Hmm, I have five autistic children, I think I'll pull the trigger one more time and see what happens?"

Griff 04-22-2009 03:31 PM

What are the other foods? Where do you get the enzymes?

Clodfobble 04-22-2009 03:44 PM

Tomatoes and Oranges are the big culprits, and other fruits to a lesser degree. This is consistent with foods that have high levels of phenols, and the thing that digests them is PST, Phenol Sulfur-Transferase. High-phenol foods give him (and her) mild diarrhea with undigested bits of the food in it, and in his case, they lead to extreme hyperactivity and visual stimming (shaking crap in front of his eyes, staring at things very up close,) but do not seem to increase the tantrums or decrease language usage or sociability.

We've been using this enzyme so far, but we're hoping that as his digestion settles he'll be able to scale back to a combination enzyme like this one, because that will include a smaller dose of the phenol enzymes plus some of the enzymes Undertoad was asking about that digest gluten and casein, in case he has accidental infractions through playing with playdough or kissing an Aunt wearing the wrong face lotion, stuff like that.

monster 04-22-2009 03:53 PM

so, clod, now your sig reads 8,065. Is that the number of words left to write in your autism nutrition book?

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