Second part of my introduction with some info on autism

[Guest guest]

Listmates,

Yesterday, I introduced myself as the mother of a daughter who is now in

high school and was recently diagnosed with fibromyalgia. I think one of

the things that kept my daughter in much better shape than she might have

been in is that when she was little, I found help in a surprising

corner. She had sensory integration problems and a great sensitivity to

chemicals in the environment, and at four she wasn't potty trained at all.

She couldn't seem to " feel " what is necessary to feel in order to potty

train, although she was already obviously very smart. A cousin who was an

occupational therapist told me that I could probably find information on

sensory integration therapy in autism circles because people with autism

often required this type of therapy, too.

This was back when the internet was still just in ascii, and you had to

access it through the public library, but encouraged by what this cousin

siad, I found a very small internet group (about 60 people) for children

with developmental delays or autism/ There I heard about two emerging

therapies that, once I tried them, totally turned my daughter's

developmental issues around. One was epsom salts therapy (taking baths to

which is added about a cup to a cup and a half of epsom salts) and the

other therapy was a gluten and casein free diet. The effect of both was

IMMEDIATE....potty training overnight for the diet, and a resolution of

sensory issues and chemical sensitivities with accelerated movement and an

acquisition of muscle tone for the epsom salts. The last two issues took

longer to resolve, but within a year she was dismissed from therapy so when

she started kindergarten, she was fine (except she couldn't run as fast as

her peers).

Back then,my father had dementia (maybe Alzheimers) and after his dementia

started, he developed some unusual overlap with issues seen in children

with autism. I also spotted parallels with my daughter's sensory issues

that had resolved, so we tried these therapies on him and found that both

these therapies reversed his dementia to an earlier stage and were CRITICAL

to his well-being and improved his happiness and seemed to stop the

downward course of his disease over the next four years that he lived....at

least, as long as we didn't have " oopses " . We actually had many oopses,

and each time, he would lose what he had gained in a dramatic way that

would go away again when we got the therapy going again. (These were sort

of blinded crossover trials that were unintenitional.)

The stark improvements in such different areas in my family members was

just enough to coax me to going back to graduate school to try to figure

out on the scientific side why these improvements happened. In the next

few years, I became part of a revolution in the care and treatment of

autism that was emerging from the Autism Research Institute which was

founded (as was the Autism Society of America) by a hero of mine (now

deceased) named Bernie Rimland. As a graduate student, I attended their

first conference (for doctors and scientists at that point) that was the

first conference of their Defeat Autism Now! project. At the core of this

project is a thinktank that grapples with the science and the clinical

issues of children with autism that is made up of about forty doctors who

each treat many hundreds of children with autism, and also there are about

ten or twelve scientists, and two researchers who spend their time finding

and analyzing medical literature and integrating that with the work of the

other thinktank members. That latter position is what I have been doing

for the years since then. There are doctors all over the world who get

trained by some representatives of our thinktank and attend our conferences

and are then termed " DAN! doctors " . There are hundreds of them.

Since autism has been a recent thread here and since some listmates have

some family connections to autism, I thought I would tell you a little more

about what our research group has found out, and how that might possibly

relate to fibromyalgia, too, (if my suspicions are corrrect). Just so

you'll know, I have a first cousin whose son has Aspergers, and a second

cousin whose two sons have autism, but again, my daughter had different

developmental issues.

Anyway, what has emerged in the last twelve years is that it is likely the

primary problem in autism is not in the brain, but is instead in the

gut. We have learned that if you treat the gut, and use special diets to

work around the problems in the gut, these children will not only have

greatly improved health, but many can lose their diagnosis because their

brain function changes. Look here for more

information: http://www.autism.com/treatable/recovered/recovered.htm. If

this information about the brain healing indirectly is a shock, please read

this interview with Martha Herbert, a member of our thinktank who is a

neuroscientist at Harvard's

hospital: http://www.medicalveritas.com/MarthaHerbert.pdf.

For ten years, I focussed on the sulfur chemistry (which is messed up!) and

lectured around the world in this area, but about three years ago, prompted

by a question from a friend to autism, I started to study about a chemical

that is high in certain foods and can cause kidney stones, but is absorbed

WHENEVER there is a problem in gut integrity or gut inflammation. This

substance is called oxalate, and oxalate is a false substrate for one of

the main players in the sulfur chemistry that was the main focus of my

previous research: sulfate. The lady telling me about oxalate had

vulvodynia, and she was a member of a foundation that had what was called

" The Pain Project " run by Dr. Clive Solomons. They found that through

reducing oxalate in the diet that the chronic pain that is the center of

that condition would resolve. My friend whose own pain had gone away on

the low oxalate diet told me that many of the women using the diet for

vulvodynia were finding that the diet also resolved other health issues

they had LIKE FIBROMYALGIA (which at that point I didn't know that my

daughter had.).

At that point, I had a huge shift in priority, and spent four months

studying every scientific study or abstract I could find on oxalates and I

learned where they might go in the body and what sort of damage they might

leave behind, and then I attended a small (60 people) world conference on

oxalate that was in New Mexico run by FASEB and met all the key oxalate

scientists and got to talk with more or less all of them. Already,at that

point, I had a pilot group of children with autism on a low oxalate diet

and the changes had been phenomenal. When I got back, I officially started

the Autism Oxalate Project which sits under the auspices of the Autism

Research Institute, but the yahoogroup I started to help people with the

diet I opened up as a general purpose group so that anyone who wanted to

try the low oxalate diet for any condition could find help there. A big

reason I did this is that even though the connection of oxalates to many

conditions is spelled out clearly in the medical literature....(this next

comment is what is so sad and unfortunate) I learned that doctors treating

these conditions don't know about this medical literature, so I'm on a

personal crusade to undo that ignorance! The sorts of conditions I'm

talking about include cystic fibrosis, Crohn's disease, short bowel

syndrome, those who have undergone bariatric surgery, celiac disease, some

thyroid disorders, those on dialysis for many years no matter what the

reason, and those who for any reason have been too long on antibiotics,

and many other things.

I now I am now convinced that my daughter crashes when she eats high

oxalate foods, but it is very hard to get her to change her diet because

her diet has always been very narrow, and there aren't very many foods she

eats that aren't high. The cobbler's children have no shoes!

If you'd like, I'll post some posts we've gotten from those with

fibromyalgia trying this diet who are on our internet list. We don't have

a lot of people with FM at this point, for the ones we've gotten knew of

my work in other contexts or were parents of children with autism who

learned about this connection through their children but they are very

enthusiastic about what the diet has accomplished for them.

On this journey together for better health,

--

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