Posted By Alison (Bothell, Washington) on 03/13/2010

I have read many of your posts and others over the last few years and put much of the information into action with fantastic results. This forum has been life changing and empowering for me. I am hoping that you can share your knowledge and opinion on A.D.E.M. MS, myelin and herbal supplements and alternative therapies.

I was reading your posts on MS and trying to see how it can apply to my son and A.D.E.M. Can the addition of curcumin, selenium and other supplements at this point, fatten up his myelin? Are there other supplements, herbs, dietary changes that could be helpful. Dosage? He is 4 and weighs 30lbs.

My son was 12 months when he had an fulminant episode of A.D.E.M. Acute disseminated Encephalomyelitis. An auto-immune attack to the myelin sheath much like MS but not progressive. It happened 9 weeks after a DTaP and flu vaccine. It is not clear if this was a factor. Never the less I have stopped vaccinating. As as a result of the A.D.E.M. he had severe neuro-motor regression. It is my understanding that he had to re-myelinate and re-cable the brain connections. He is now four-years-old. He has mild-moderate delays in gross and fine motor skills. He has cognitive delays and severe delays in his expressive language. Apraxia. He has mild hemiparisis on his left side. He is non-verbal. 50 percent of patients recovery completely. Many recover in 3-12 months. It has been three years now.

We recently did a constraint induced therapy where a cast was put on his right arm(strong side) to force him to develop his left side. We notice amazing improvements not only in the use of his left hand but also in cognative, speech and sensory awareness. He had global improvements in all areas of development.

He is on a seizure medication, levetiracetam . Although has not had a seizure since he was in the ICU during the attack, he remains on the anti-convulsive as precaucionary as he is also on methylphenadate, a central nervous system stimulant. We have notice tremendous development since he started taking it. Our neurologist in Mexico says that the methylphenadate brings down the threshold for seizure and that if he began to have seizures it would be a major set back for him. We may switch piracetam in the future when he is off the levetiracetam. Piracetam is not available in the US but not illegal either. His EEG's have shown tremendous improvements since he started the methylphenadate. Almost typical.

What is your opinion on HBOT, hyperbaric Oxygen Therapy? Initially I found my 12 month old unconscious, not breathing, beginning to turn blue and had to revive him with CPR. Maybe his brain was deprived of oxygen for a period of time? Some of the off label use for it is for cerebral palsy, MS, Stroke and near drowning.

We have cut out MSG, aspartame, diary and processed foods in our diet for more than a year now. I muscle test most store bought foods before adding them to the family diet. We have also been seeing a Neurolink practictioner that runs a chelating protocol on my son.

Any ideas you could share would be greatly appreciated.

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