Questions about PDD-NOS in a young girl and cholesterol

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TJness
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24 Jun 2011, 6:33 pm

Hello.

I'm not sure if I am posting this in the right place or if this is even the best forum for it as the emphasis here seems to be on Aspergers syndrome but...

I have a good friend who has a 3 year old daughter who has been diagnosed with pervasive development disorder not other specified (PDD-NOS). Also known as atypical autism. She has it pretty severely.

Her parents have tried a lot of things to help her including a GF/CF diet and ABA therapy. The therapy has probably helped her the most but she goes up and down in terms of progress. She has also undergone a lot of genetic testing. Through the testing it's recently been discovered that she has a condition called hypobetalipoproteinanemia, which is a condition in which not enough LDL cholesterol is made. It's low cholesterol. There has been some research linking autism and low cholesterol and some positive early results with treating it with a higher cholesterol diet.

So far they have been giving her supplemental cholesterol and made her diet a little more cholesterol heavy and it appears to be helping somewhat. They are interested in pursuing this further with an autism specialist/doctor who has experience with treating autism patients that have low cholesterol in terms of dietary and supplemental cholesterol, vitamin therapy recommendations and other things like medium chain triglycerides.

So my questions are, first, does anyone here have any experience with treating severe autism in a young child that has been diagnosed with a low cholesterol condition with a high cholesterol diet/supplementation? What has your experience been like?

Does anyone know of any good doctors (preferably on the east coast of US) that treat autistic patients that have a low cholesterol condition with dietary measures including cholesterol supplementation, MCTs and vitamin supplementation?

Thanks in advance for any opinions, suggestions or advice!



Ettina
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24 Jun 2011, 7:23 pm

Many different syndromes can result in autistic behavior. In those cases, any medical treatment is more to treat the underlying condition than the autism.

Haven't heard of hypobetalipoproteinanemia before, but my suggestion would be look for a doctor experienced in that specific disorder, whether or not they know about autism. Try searching that condition in Google Scholar and look at who has written articles about that condition and which universities they're affiliated with. If you see a university near your area, then you've found a doctor in your area who knows about that condition.



oldmantime
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24 Jun 2011, 7:26 pm

nope, but i've been doing better myself on a high fat diet. unrefined coconut oil and unpasteurized butter from grass fed cows would be your best bet for raising these things i'd think.



TJness
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25 Jun 2011, 4:58 am

Thanks for the suggestions.