Acute Disseminated Encephalomyelitis (ADEM) Support Group

Need a doctor in ny


#1

someone on this website had referred Doctor in my NY area for A.D.E.M. I called and put info away because he said to wait till my son gets his next MRI's and then call him. guess what??? I lost this doctors info.....if someone here knows this doctors name. can you please email it to me again....please asap


#2

Remind us of your NY area, momof4. Perhaps you can tell us what you remember about the doctor, even if it's just a few small details like his location, any parts of his name you can recall.


#3

I live in Lindenhurst, its on Long Island, NY. I didn't get it in a message here it was sent to me in my email.

it was a short message. I am so mad at myself.

My son still struggles with these "seizure like"(they haven't been able to capture it on an EEG) episodes. the doctors I see are at Long Island Jewish Hospital. they are great and then even brought in Doctors who specialize in A.D.E.M. from NYU in Manhattan. they want us to follow up with MRI'S in June.

the fact that my son cant control when he gets these (I call them) episodes and doctors tell me that is NOT a symptom of A.D.E.M. so they passed me to psychiatrist to treat with meds. they put him on resperidone (which he was taking in hospital) and now added Prozac. and so I am just left home with no resources except to wait till new MRI'S. I just cant understand why they can't explain why he has these episodes and how can they say that it is not related to ADEM when these episodes was HOW THEY FOUND THE ADEM. maybe the ADEM that is on his right frontal lobe caused damage???? no answers so after the upcoming MRI'S. I wanted to possible get another opinion. he is home schooled and I lost my job. sorry needed to vent.


#4

I am sorry to hear about your son’s ADEM. Have you tried finding medical support at one of the pediatric MS centers in the country? There is one in Buffalo, NY- perhaps there is one downstate as well. I think there are 6 throughout the country. We have found their resources and expertise to be helpful. I wish you the best.


#5

My daughter has seizure like as well, very often twitching on her left face…done few times of EEG did not detect any epileptic in the brain…Her Dr said the inflammation of brain causes her not able to control her muscles…the problem with her is her limbs, and body very tense…


#6

momof4, were you sent the link to the Ben's Friends Doctors List here?: ADEM