Acute Disseminated Encephalomyelitis (ADEM) Support Group

About the What's New With You? category


#1

Tell us how you are doing and what you have been up to lately.


#2

As I am not new here, so some of you know my fight for my son who is 12 now and was diagnosed a year and a half ago. onset his symptoms came across as breathing problems then the tremors they thought were panic attacks. quickly it was hallucinations. looking like encephalitis. then they found the mass, biopsy showed ADEM. confirmed with 2 other hospitals. IV steroids shrunk the mass and claimed 'HE IS CURED". His Non EEG seizures continue constantly. some are accompanied with falling to the floor. gurgling, foam at the mouth then convulsions. rapid eye blinking with his mouth movement. he can be distracted sometimes like when he has a friend over but then he gives me a look and I know the friend has to go and we wait for his “episode” to end. this is daily. 3 different neurologist all confirm ADEM is not an issue and needs a psychiatrist. psychiatrist says he needs a neurologist. I wasn’t told ANYTHING. they all just left us. I have one more appointment to see a local neurologist who deals with epilepsy. then that’s It I have no more resources, strength or money as I have been out of work to take care of him. yes I am lucky as lesion was on fight frontal lobe and not on spine (don’t know what PON is that referred on another place on this site. is it too difficult to say he has a TBI??? NOTHING, I HAVE NOTHING. I have one more doctor and then that’s it…unless someone has a magic wand…I think I will leave and live with this as best I can.


#3

Momof4,

Have you tried contacting any doctors at Cleveland Clinic OR http://profiles.utsouthwestern.edu/profile/105091/benjamin-greenberg.html

Lynn


#4

Hi Lynn,
I am so aware of Dr. Greenberg. I have contacted his office. he can not talk to me unless I go there but I did fill out forms to allow Michael’s doctors here to talk to him. they wont do it. they say they are the best doctors. I have to find out how to change my email address on here as I don’t get updates. there is too much information here and other sites that I cant seem to process. school wants a letter to tell them how to handle Michael’s episodes. NO ONE WANTS TO GIVE ME LETTER. I don’t even know if this is fatal??? if so should he be in school? is he still healing or is this damage forever???


#5

I am SO sorry to hear all of this. My husband is a Chiropractic Physician and there is NO room for physician’s attitudes. They should ALL share information and be more interested in the patient’s condition than their personal attitudes! What type of doctors are they? Have you tried Cleveland Clinic’s neurologists? I live keep Michael and your family in my prayers. Lynn


#6

Hi Lynn, I have been to Neurologists, one said she was an epileptic neurologist, been to teams of those, then there are the team of psychiatrist’s and Psychologists, therapists, even the team of disease and control, social workers. you name it, I have seen them. I haven’t been out of state but I know they are having a RNDS there soon. but I don’t have the money to go, as if I did, I would have gone to texas. thank you for the prayers. hope you and your family are doing well also.