My 21/2 year old son was diagnosed with viral encephalitis just after turning 2 which has now left him neurologically devastated. The virus was never found and it is not a metabolic disorder. He also has seizures. He has about 20 subclinical daily. MRI shows some degradation of brain tissue across the entire cerebral cortex. Is there anything out there that can help bring him back? He's on a ketogenic diet. He also takes Keppra, Topamax, phenobarb, pentabarb, valium, zantac, omeprazole and bicitra.

Thanks

Dear Lula,

I'm sorry to hear of what sounds like a devastating problem for your family and your young son! You might want to try Dr. Mark Hyman at www.drhyman.com I'm not sure that that's his correct website, but if it turns out not to be send me a private message and I will look it up to be sure. He treats disease using genetic markers and other alternative therapies. He's quite pricey, though: I don't think he accepts insurance, and I believe his first diagnostic visit is $700.00, although all of that is on his website. I can understand why he might want to charge so much because he probably has a lot of people who want to see him; supply and demand, you know, has its effects on everything, including healthcare!

You might also want to try "The Analyst;" put those words into Google and you'll see a website with health info on it (as well as several others; you'll know which one to choose.) These are naturopathic/alternative medicine choices. I hope they work for you, and I hope you will post here again to tell us how your son is coming along if any of these, or any other therapies, help him. Cheers!

Lula, I too am sorry you are having to go through this. It must be really tough on you. I would like to help with the meds though. If possible, could you give me the dosage on each med?

The Keppra is an anticonvulsant, but is contraindicated in children;

Topamax also an anticonvulsant, but is contraindicated in children under 6, but is being investigated for use in infantile spasm;

Phenobarbitol is another anticonvulsant and is used for children in certain dosages depending on weight;

Pentobarbitol is yet another anticonvulsant (but can be used as a sedative among other things) that is used for children in certaing dosages depending on weight;

Valium used for the following: anti-anxiety, anticonvulsant, and skeletal muscle relaxant, it can be used in children but has a reputation for dependence in long term use;

Zantac is used for GERD or acid reflux that is used for children;

Omeprazol is similar to the Zantac, but my text does not state that it is used in children;

However, my text did not have bicitra listed.

FYI, my "text" is the 2007 Mosby's Nursing Drug Reference that we use in the hospital.

It is my opinion, and opinion ONLY, that your son may be over-medicated on anti-convulsants. Have you gone for a second opinion? If not, I believe it may be necessary.

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Originally Posted by lula

my 21/2 year old son was diagnosed with viral encephalitis just after turning 2 which has now left him neurologically devastated. The virus was never found and it is not a metabolic disorder. He also has seizures. He has about 20 subclinical daily. MRI shows some degradation of brain tissue across the entire cerebral cortex. Is there anything out there that can help bring him back? He's on a ketogenic diet. He also takes Keppra, Topamax, phenobarb, pentabarb, valium, zantac, omeprazole and bicitra.

thanks

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This must be so devastating. Fortunately your son is young and the capacity of the body to heal is amazing. I would give him high nutrition, lots of fish oil and protein and check with alternative health practitioner that is highly qualified. We are always told that nerve tissue does not heal but that is not what we always see particularly in the young.
Prayers to you. Sunny