involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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Postby Nickmare » Mon May 17, 2010 12:38 pm

My fiance went through a severe bout with ADEM. She is now beginning to recover after a couple months in the hospital. She has limited movement (can slightly move her right hand, feet, and neck) and has just begun swallowing again.

I'm just wondering if anyone has experienced or knows of ways to help her have the best chances in the recovery phase. The doctors have no plans to do anything other then physio, and from what I've seen on the internet it looks like there is nothing available. It'd be great if there was a way to aid w/ remyelination.
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Re: Recovery

Postby marieke » Mon May 17, 2010 1:25 pm

Myelin grows back at 1mm a day. PT/OT will help keep her mobile and help keep her muscles working.

Plenty of fresh foods, veggies and fruits, water, sleep! It is very tiring for the body to heal and she will need to rest when she feels tired. It is a low process and will take much patience on everyone's part.

You may find many "vitamins" sold at crazy prices saying they will help with this. Do not waste your money.

Vitamin B12 is an important vitamin for myelinization/healthy nerves. You can get a blood test to check her levels. If they are low then she should take more (usually injection).

Good luck,
Marieke RN (TM at T1 March 18, 2004 @ age 28 )
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Re: Recovery

Postby PK81 » Wed May 26, 2010 4:35 pm

My daughter, was 13 when she developed ADEM. The staff at Chicago Loyola saved her life but did not know what she had until her second week in the hospital. The neuro team performed a craniotomy to allow the brain to swell. She was in the ICU for 7 weeks and then a rehab hospital for 8 weeks.

She has made a remarkable recovery. Early on in her recovery, we gave her high grade fish oil every day before going to bed. We also had her in Hyperberic Oxygen Therapy. Many neuro's still do not believe in HBOT, but I will say that my daughter's physical and cognitive improvement peaked during her treatments. There's a UTUBE video of a young girls that had ADEM like symptoms.
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