Cerebral folate deficiency continued

[Guest guest]

Hi again ..

I would also say that also has some autistic tendencies.

He is definitely drawn to things with a motor component..cause/effect, buttons,

compressors, vacuums, leaf blowers, the louder, more vibrating, the better..

For example, he loves to blow up and deflate the air mattress a thousand times,

we have a very small compressor that he loves to blow up a thousand balloons

with. He hyperfocuses on these things and can do them for hours...

So, the repetitive part is where I say autistic(ish) .. But, then again, it

could be his sensory craving for the noise, vibration, or whatever too.

Just thought I would add that..

And yes, the folate issue could explain why the NV is working so well. I will

definitely be asking the doctor about NV when I am there!!

Sent from my Verizon Wireless BlackBerry

>

> Honestly I know of no kids here that went through spinal taps- but there

probably are others. I don't believe spinal taps, this diagnostic testing

went through is common here, so it's difficult to say if cerebral folate

deficiency is rare or not.

>

> BUT -I found something VERY interesting on a quick search...

>

> From the New England Journal of Medicine

> Autoantibodies to Folate Receptors in the Cerebral Folate Deficiency Syndrome

> T. Ramaekers, M.D., Sheldon P. Rothenberg, M.D., M. Sequeira,

M.S., Opladen, M.D., Nenad Blau, Ph.D., V. Quadros, Ph.D., and

Selhub, Ph.D.

> N Engl J Med 2005; 352:1985-1991May 12, 2005

>

> " Serum specimens from three children with cerebral folate deficiency (Patients

7, 9, and 21) did not contain these autoantibodies.

>

> Patient 9, who had four of the clinical criteria for the syndrome, had frank

autistic behavior and recovered completely after receiving 400 mcg of folic acid

daily; he currently attends a regular school.

>

> He was the first child identified to have the syndrome and received a

multivitamin containing folic acid, whereas all the other children were treated

with folinic acid. "

> http://www.nejm.org/doi/full/10.1056/NEJMoa043160#t=article

>

> I mean who knows, this could be yet another reason that NV is working -by

supplying the folic acid through food sources?

>

> Please share this with your child's doctor. I'd be curious to see what he

says since supplementation is recommended. If you supplement your body will

utilize typically 10 to 30 percent -but if you get the nutrients from food you

utilize typically 100 percent. All the nutrients in NV are from food and it

does have the 400 MCG of folic acid per 2 scoops which is 100 percent of daily

values http://pursuitofresearch.org/products/nutriiveda/nutriiveda-ingredients/

and the amount that made the one child " recover completely " . Here's another

link to share http://pursuitofresearch.org/find-a-professional/

>

> I just find this so interesting that this child

> " had frank autistic behavior and recovered completely after receiving 400 mcg

of folic acid daily "

>

> and

>

> " he currently attends a regular school. " (!!!)

>

> At 7 years old your son would be on 2 scoops a day split into 2 servings but

that would be the full 400 mcg

http://pursuitofresearch.org/products/nutriiveda/frequently_asked_questions/

>

> Why did they give a spinal tap? I can't even imagine preparing a

child for that- it must have been SO difficult!!! A spinal tap was never even

suggested for my son Tanner when they put him through all the genetic testing

years ago.

>

> When you say has many other things in addition to the diagnosis of

dyspraxia, do the other symptoms have diagnostic names? We have quite a few

here that have children with multiple diagnosis including some with even rare

genetic syndromes. I may be able to introduce you to others with the same

conditions.

>

>

> =====

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