My son and ADEM

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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My son and ADEM

Postby cpkfan » Wed Sep 09, 2009 4:22 pm

My son was diagnosed with ADEM in December 2000 when he was 2 years old. He presented with a fever of over 103 for 12 days. When we took him to the hospital for severe lethargy he was dehydrated and given an IV. During the 12 hr hospital stay his NA electrolyte level dropped dangerously low and started seizing because of it. Once they stopped the seizure he at first improved but 3 days later he started having neurological deterioration including rigidity in all his limbs, drooling, couldn’t speak, sit up, walk, he was in a coma, had a slow heart rate then a fast heart rate, etc…. He received steroids, acyclovir, and IVIG 3 times due to a large lesion in his brainstem seen on his MRI encompassing almost 80% with minimal extension into the thalamus. Two and a half weeks later he “relapsed” while in the hospital with major cranial nerve involvement (problems with facial symmetry and eye problems possibly with optic neuritis) concurrent with a spike in fever again of 103. He received steroids again and was hospitalized for 2.5 months until he was transferred to a rehab hospital for several weeks inpatient then outpatient.
Almost nine years later he has been symptom free and from a follow up MRI 4 years ago we have seen almost complete resolution of his prior lesions. He does have only slight residual affects compared to most including left sided weakness, an abnormal gait and 20/400 vision in his right eye.
One month ago my son wanted to play football so he started practicing 4 times a week for almost 3 hours a day. After each practice I saw fatigue and exhaustion set in but I thought it was just from being non active for so long. After he started complaining of viral symptoms (stomach ache, headache, backache, etc… ) he woke up one night with vision loss in his left eye. We immediately took him for another MRI which showed no new lesions but signal intensity in the optic nerve. So he was hospitalized again concurrent with a low grade fever for a day and given IV steroids for 5 days and is now home on a 5 week steroid taper which I was told should delay the onset of MS if he should get it as he gets older although he has no O-bands in his CSF right now.
Would a rise in his internal temperature cause an entirely new set of symptoms from irritation to the already damaged nerves versus Uhthoff’s syndrome? Also who is the best doctor to see for a pediatric case of ADEM in the US? Our current neurologist has a wait and see attitude about the future and says the diagnosis is ADEM with a possible central pontine myelinolysis (from sodium correction) as a secondary cause but I want another opinion. I am very concerned about his vision and preserving what he has left. What are the chances of ON recurring and robbing him of what vision he has left? Any insight or experiences would be greatly appreciated! Thanks for listening!
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Re: My son and ADEM

Postby marieke » Thu Sep 10, 2009 8:11 am

I would try to contact Johns Hopkins and see if they take peds cases and who to see.
Marieke RN (TM at T1 March 18, 2004 @ age 28 )
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Re: My son and ADEM

Postby Mommy4 » Mon Nov 02, 2009 4:23 pm

Dr Bean at DuPont Hospital for children in Delaware was kind, knowledgeable, but also aggressive. I believe he saved my son from much more damage. Other neurologist would not do IVIG. We saw a huge improvement with steroids in combination with IVIG. Good luck and God Bless.
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