Re: L-Carnosine Study/thoughts on mito disorder and autism (Dr. JM?) - long

[Guest guest]

Marla -

Carnitor and L-Carnitine have been enormously helpful to my son with

autism - one of his top 5 therapies. We didn't do it on the basis of that

study, though. He is hypotonic and weak and motor delayed, and his doc

checked his serum Carnitine levels and found them to be seriously low. We

started Carnitor, and he literally got up off of the couch, started running

and was able to pedal a tricycle. I can't say that I saw improvements in

receptive language and social skills solely from Carnitor, but he has made

steady progress in all areas. I think that there is a subset of kids with

autism who have mitochondrial disorders in whom meds like Carnitine and

CoQ10 are enormously helpful in terms of tone and energy metabolism. I am

now on a mito elist (our family is all symptomatic and being worked up for a

mitochondrial disorder; we are all Carnitine deficient and Carnitine

responsive) and lots of the mito kids have autism; in fact, many of the

issues (gut, sleep, behavior) are so similar that it is chilling. Even food

allergies and special diets and chronic viral infections are seen in the

mito kids.

I have been thinking about this issue, and would like your opinions (Dr.

JM?) - do some kids who have autism have it because of mitochondrial

disorder (and those are the kids who make great progress on the mito

cocktail)? Probably yes. Second half - does mercury inhibit the enzymes of

energy transport, and cause some kids to have mitochondrial disorders as

well as autistic symptoms? My son has responded so well to chelation

(normalized his positive MBP, mainstreamed in kindergarten next year,

language above age level...) so I know that heavy metals are an issue for

him, in addition to his (probable) genetic mitochondrial disorder.

I would recommend (IMHO) that parents (and docs) of kids with hypotonia,

muscle weakness, easy fatiguability, motor delay... and/or problems in 3 or

more organ systems (isn't that most of them?) consider Carnitine screening

and the mito cocktail. If multiple (especially all) family members are

symptomatic, especially if some are severely affected (my middle child has

severe spastic CP, NPO and tube fed, all major organs involved, ketogenic

diet for epilepsy, cardiomyopathy) consider a workup for mitochondrial

disorders.

Sorry to be so long - these thought have been consuming me recently. This

just can't be coincidence.

Kathy

L-Carnosine Study

> I am looking at:

> The Journal of Child Neurology/Volume 17, Number 11, November 2002

>

> Double-Blind, Placebo-Controlled Study of L-Carnosine

> Supplementation in Children With ASD.

>

> Long story short:

> " Our observations regarding the autistic spectrum population suggest

> improved receptive speech and improved social attention, less

> apraxia, and overall global improvements. "

>

> I don't think I know one family that is on L-C, does anyone know if

> this study's finding have been retracted or do I just know the wrong

> crowd : ) ???

>

> Marla

>

>

>

>

> Many frequently asked questions and answers can be found at

<http://forums.autism-rxguidebook.com>

>

[Guest guest]

Daer Kathy,

Thank you so much for this post.

Ann

L-Carnosine Study

> I am looking at:

> The Journal of Child Neurology/Volume 17, Number 11, November 2002

>

> Double-Blind, Placebo-Controlled Study of L-Carnosine

> Supplementation in Children With ASD.

>

> Long story short:

> " Our observations regarding the autistic spectrum population suggest

> improved receptive speech and improved social attention, less

> apraxia, and overall global improvements. "

>

> I don't think I know one family that is on L-C, does anyone know if

> this study's finding have been retracted or do I just know the wrong

> crowd : ) ???

>

> Marla

>

>

>

>

> Many frequently asked questions and answers can be found at

<http://forums.autism-rxguidebook.com>

>

[Guest guest]

Also, what does: severe spastic CP, NPO mean?

Best, Ann

L-Carnosine Study

> I am looking at:

> The Journal of Child Neurology/Volume 17, Number 11, November 2002

>

> Double-Blind, Placebo-Controlled Study of L-Carnosine

> Supplementation in Children With ASD.

>

> Long story short:

> " Our observations regarding the autistic spectrum population suggest

> improved receptive speech and improved social attention, less

> apraxia, and overall global improvements. "

>

> I don't think I know one family that is on L-C, does anyone know if

> this study's finding have been retracted or do I just know the wrong

> crowd : ) ???

>

> Marla

>

>

>

>

> Many frequently asked questions and answers can be found at

<http://forums.autism-rxguidebook.com>

>