Neuropathy Problems Archives

LACK OF MYELIN

Hi

I have a two year old who has cerebral palsy. An MRI was done to discover what is the cause for cerebral palsy and it was concluded that he had hypo-myelination (I hope the spelling is right). What can I do to help him. Is there anything I can give him (e.g. essential oils, special diets) that will be able to help his condition. Since he has been diagnosed with CP I have started to look for alternative treatments and to trust nature more then doctors.

Hope you can help me with some guidance.

Many thanks
Sabina

Follow Ups:

• Re: LACK OF MYELIN Sabina Savin 02:17:44 9/16/02 (0)
• Re: LACK OF MYELIN in 2 yo. (Archive in neurological.) Walt Stoll 08:21:15 9/14/02 (0)
• Re: LACK OF MYELIN Donna E. 18:38:03 9/13/02 (0)
• Re: LACK OF MYELIN Donna E. 18:08:12 9/13/02 (0)
• Re: LACK OF MYELIN trudy 16:21:02 9/13/02 (0)

In Reply to: LACK OF MYELIN posted by Sabina Savin on September 13, 2002 at 10:15:41:

I don't know if this is of any use, but I know that multiple sclerosis is associated with damage to the myelin surrounding the nerves(?) Possible the MS society would be the place to ask about any work in repairing this.

In Reply to: LACK OF MYELIN posted by Sabina Savin on September 13, 2002 at 10:15:41:

Here is the address and contact information for the Myelin Project:

The Myelin Project
Suite 950, 1747 Pennsylvania Ave, NW
Washington DC, 20006
telephone: 202-452-8994
myelin@erols.com

It was founded and I think still pretty much run by the Odones. They are the people who made the movie Lorenzo's Oil. They are researching ways to replenish the myelin sheath. If you never saw the movie, their son had ALD, which destroys the myelin sheath through the body's improper handling of Very Long Chain Saturated Fatty Acids.

Did your son's doctor say, or do you know why your son has hypomyelination? Was he just born with it, or will it progress? MS does the same thing as ALD, but through a different mechanism.

In Reply to: LACK OF MYELIN posted by Sabina Savin on September 13, 2002 at 10:15:41:

And here's the website:

• Myelin Project

In Reply to: LACK OF MYELIN posted by Sabina Savin on September 13, 2002 at 10:15:41:

Hi, Sabina.

EFAs, whole foods diet, probiotics & whole food concentrates (see supplement archives). Also, do not forget the possibility that this could be a hypersensitivity to something in his diet.

If the first sentence is not enough to help a lot, you might let us know how he is doing and get more information about how to test this out.

Walt

In Reply to: LACK OF MYELIN posted by Sabina Savin on September 13, 2002 at 10:15:41:

Hi,

First of all I would like to thank you guys for your replies.

My son has been diagnosed with Cerebral palsy when he was 4 months old but they had no clue as to why he had it. After many battles I convinced them to test my son, hence the MRI scan. The result was (in their words) "the white matter of his brain is not guite sufficient". As far as I know the white matter of the brain is the myelin. I have started reading and I am a bit confused as the white matter seemsto be compsed of the axons surrounded by the myelin.

However the more I read about it the more I am convinced I can make a difference for him through his diet, it is just that I don't know where to start and I am scared that everything I give him to eat might acutally work against him.

They told me it happened at birth, due to lack of oxygen, the damage is done and it will not get worse.

He has been on glyconutrients (Ambrotose) for three weeks now, he has only a guarter of a teaspoon a day, as I am afraid he might have a detox reaction. I have also heard about phytochemicals but I don't know much about it or if they would help.

I intend to put him on the whole foods diet but I have a lot of reading to do as I don't know much about it.

Thanks a lot for your help and if you have any ideas that might help my son I begg you to share them with me.

Regards
Sabina