Acute Disseminated Encephalomyelitis (ADEM) Support Group

A.D.E.M. who knew?


#1

I am writing this to get support and maybe this will help someone else. My son is 10 yo. he has an IEP as he is just a slow learner and I wasn t going to turn down the extra help that he needed. everything else was normal. he does get once in a blue moon a touch of asthma during the change to cold weather, like December/January but not chronic and he seems to have grown out of it. which is why this is such a surprise to me.

Sept 9, we had a heat alert day and so he went to school. I got a call that he was having trouble breathing. I left work and took one look at him and ran to THE ER. then he started shaking legs and hands and crying. (no tears) rushed him back to ER like 3 times. was told by hospital and neurologist that they were panic attacks. at this point I am seeing his attacks getting worst. a stare like he was far away. just crying "screaming help me". he says he see's the nurse and doctors from our FIRST ER visit on the walls and something about blood but soon these episodes (I call them) he wouldn't remember having them. then it happened at school and so principal gave me a choice to get him to a certain hospital that has a pediatric psychiatrist. I went to one. 7 hours of waiting he saw nothing and sent me home. everyone telling me to put him in a mental hospital as in patient. my heart felt like it stopped beating. even family members were leaning to get mental help.

I was about to sign him in when I decided to go first for his yearly pediatric doctor to get him a flu shot and check up. IT HAPPENED. THE EPISODE HAPPENED RIGHT IN HIS OFFICE. his doctor video taped it and sent it to his people at the hospital. I recvd a call that I needed to rush my son to this hospital ASAP. my son tested positive to Mycoplasma (so asthma may not have been asthma) then an M.R.I. and several tests. a mass was detected on his brain frontal lobe. A.D.E.M. was a possibility but not sure as usually there are more then one lesion. but after brain biopsy. he was diagnosed as the A.D.E.M. started steroids while still taking them at home, he is also on meds to help with the 'episodes". they still don't know if they are related!!!! need follow-up up with neurology and now seeing psychologist. I don't know what I am doing as I know if me and his pediatrician hadn't fought for him. this could have been fatal. the big question. what do I do now???/


#2

momof4 - Thanks for sharing this story with us. ADEM is so hard to diagnose so your story of being bounced between hospitals and doctors is familiar to us all. Good for you for advocating for him and for making sure he got the treatment he needed. Please keep us posted on your son's progress and I hope the steroids have begun to help. Best, Ken


#3

Thanks Ken. somehow I just don't feel right. I am home now. left with follow up visit with phycologist to help with Risperidone medicine to help with the bizarre epidsodes. I was under the impression episodes would stop once the sterioids took effect and swelling in brain went down or disappeared. but my talk's during the intake I was treated more like it is a separate issue. have follow up visit with neurologist next week which I am sure he will ask for a MRI follow up then another visit to get the results. I feel I should or the doctors should have kept us in hospital till he is cured??? what am I supposed to do now???? just wait. I cant send him to school with this head with big mark from biopsy and him having mini episodes??? I cant go to work and leave him alone. doing home schooling for now...


#4

about my sons condition. wanted to clarify about his episodes. I mean he stares off with his mouth open shakes and screams and pants. these last 1 minute or 1 hour. we are weaning off the steroids back for a follow up MRI Dec what am I supposed to do now?


#5

Our story is much different, but I just wanted to say that my heart goes out to you and your son. I hope you get answers and some peace soon.


#6

giving an update since Michaels diagnoses of A.D.E.M. Oct 27th 2015. we were released November 2nd and tapered off steroids. episodes started again so we were told to go back to the 5ml of steroids and taper off again. December 11th went for new M.R.I.'S for spine and brain. doctor called me and told me spine was clear but head mass on his frontal lobe changed texture. my LIJ doctors brought in team of NYU doctors to help. I met with them Monday Jan 4th 2016. ok they say the one lesion is not doing anything and they feel no treatment needs to be done. we should just watch it closely. the bizarre episodes (that by coincident started at the onset of finding lesion) doctors feel would be best handled by a Psychiatrist. My son just turned 10. he cant go to school and is home schooled. I cant go to work and I now have 2 sets of doctors telling me the same thing. I am ready to throw in the towel. NO HOPE