Biomedical Advice

[Jamies Mommy]

We did GFCF when Jamie was 3 and saw now difference at all but I am wondering about the other biomedical treatments that people do. I have an HMO and can't afford to see a DAN doc, we can barely pay our bills now. Does anyone have any good starting points, tips , or websites to find out more about this approach and what to start with?
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[Tootsie]

There is a Gluten Sensitivity/Celiac Disease forum here at braintalk. The folks there are very knowledgeable, helpful, and offer a great variety of individual experiences they will gladly share with you. There are several links to help you navigate your way through the maze of information that can be quite intimidating, at first. Scroll down the page to the rectangular box and click on the small arrow. There are 2 indexes, the first is general information subjects and the second lists conditions and diseases by name.

What impressed me the most, was that symptoms can be so widely varied, with no single symptom, being enough to point medical professionals to an area of more testing. Also variable, is the fact that some people notice an improvement immediately after going on a GF diet, while others need to stay on it for a period of months, before any improvement is noticed.

My grandson seems to do better avoiding food commodities with many additives, preservatives, colorings, dyes, etc. Fortunately, they live where such products are easily obtainable. Cheerio.

[RathyKay]

"Children with Starving Brains: A Medical Treatment Guide for Autism" by McCandless was required reading prior to our first DAN! appointment. It pretty much covers all the treatments offered by our DAN! doc - diet, supplements, chelation, etc. Our library has it.

Our doc starts with diet (we were already there), and then adds some "standard" supplements. Then, based on test results, he customizes the supplements (based on vitamin / mineral blood levels), as well as further refining the diet (based on food intolerance testing). Later, we started on the quintet, and after that went on to a chelation challange. Then, we were fighting yeast and constipation, and I need to check back in with our doc and find out the new plan. I kind of think we need to rerun many of those tests again to see where Tom stands.

Anyway, I would start with that book and decide from there.

[Kristen (ColeysMom)]

You don't necessarily need a DAN! doc either. We have a great GI that is very open minded and is using supplements, probiotics and enzymes to help regulate Coley's system. We aren't there yet, but since we began seeing him Coley has REALLY made some good progress growth & weight gain AND developmentally.

Have you read some of the posts here? Do a search on "biomedical" there are a bunch of conversations on the subject.

[Kerri123]

:) Hi, just going to jump in here, first post and all.

My first bit of advice would be to remove all of the toxins from the home. Cleaning supplies need to be "green" - laundry detergent, NO LYSOL, etc. Next I would start going as organic as possible, especially cutting out artificial flavoring, that made a huge difference in our house. Get on a good supplement routine, I'm sure there is loads of advice on here. B-12 shots, Omega 3 / DHA and GABA are not that expensive, and those are the three supplements that have changed everything for us.

Just some ideas for you, hope I've helped a little.

Kerri

[Jamies Mommy]

Thanks for the advice. We did do strict GFCF for over a year with no noticeable difference. So he is probably one of the kids it doesn't work for. I am very interested in trying out some of the newer supplements. When we went that route SuperNuthera was one of the only ones recommended at the time.

[Kristen (ColeysMom)]

We had a similar experience too. But saw absolutely AMAZING results, and REALLY fast, from removal of fructose.

But also removing chemicals, preservatives and additives. I have to agree that 'man-made' stuff, including meds (like tylenol and some vitamins) have a really odd effect on him. None of the docs understand it, but they all agree that if his body reacts the way it does, hyperactivity/loss of appetite/difficulty processing/mood swings...he shouldn't have them. They go out of their way now to find alternatives, when necessary. But we haven't put a medication into him for years! Mostly we use old fashioned techniques to lower fever of help with cold symptoms...pain is a tough one, but luckily he has a pretty high threshold.

I don't know why, but it for sure seems like different kids react adversely to different things. But carbs do seem to be the overall category for many of them, so I would start there and see if you can test a few. Of course not all kids show progress from diet restrictions, but after seeing Coley's transformation off fructose...I feel obligated to encourage everyone to give it a shot...the worst is that you struggle for a few days and there is no change.

Overgrowth is another biggy...I'd google and search here too, for info on that. Candida, yeast, biofilm, overgrowth...

Crossing everything for you!!!