Acute Disseminated Encephalomyelitis (ADEM) Support Group

Friends and Family Affected by ADEM


#1

Where friends and family meet to share views, insights and stories.


#2

HI, daughter is 10yrs old and it will be 2yrs in jun that she was daignossed with ADEM. I have been looking for supports inWisconsin.


#3

Does anyone get dizzy after 2 yrs being diangossed with ADEM? Jenna who is 10 was diangossed june 2010. She is still having problems. Today she had a field trip and after walking a mile she had gotten real dizzy and almost pasted out. But all the DRS. I talked 2 said that is normal because she has asthma. I guess I 'm scared and worried about my child because the only edu. I get about her ADEM is though the internet. Thanks for have support group for us parents that are scared.


#4

Have you thought of calling a pediatric neurologist? My daughter had a ADEM last month and the pediatric neurologist at mayo clinic, Rochester was amazing. I was very impressed with the staff and treatment we received at st. Mary’s hospital/mayo clinic.


#5

We do have a peds neuologist. They talk with the peds at The Mayo clinic all the time. Since my insurance will not take us there due to having Drs. in our area that are peds. But they are trying their best for my daugtherI will giving them that. Since this summer Jenna has become alot better. So I geuss I just need to be patient like the DRs. told me too. It really does help having a suuport group that is for people dealing with rare things like this.


#6

I don’t blame you for being over cautious and concerned. My husband and I were terrified by what happened to our daughter. Aside from some shaking in the hands, she seems very close to back to baseline. I wonder why your insurance won’t allow you to get a second opinion though. You would think they would welcome that.


#7

Hi, my name is Lisa, I found this site and had a lot of questions and was told I should post my story on this board and maybe get some feedback. reading some of the other stories.....is like wow GREAT. I really hope to make some friends and gather information that could help me through this. so this is my story. I Live in Long Island, NY. my youngest son is 10 years old named Michael. Sept 9th is when our lives changed. i was called at work to pick Michael up from school bc he was having breathing problems. Michael has an very MILD case of seasonal asthma so i was shocked to get a call like that. i saw he was having problems breathing so took him straight to the local hospital. nothing extremely odd about this experience, they gave him albuterol and waited for him to respond. then he kept complaining that he couldn't breathe. and was panicking and his hands shook and legs. then he would eventually breathe. odd behavior lead us to an overnight stay to see a ped. neurologist who at this time Michael was better and so neurologist asked him to touch his nose and stand on one foot. said must have been panic attacks. all was clear and we went home. these "panic attacks" got worst and so we were back at the E.R. Sept 24, 27,28. by now i called them "episodes". he was screaming this loud cry while his body was shaking and body was distorted. then hallucinations of seeing people. well when it happened at school i was told only 2 hospitals would have pediatric psyciortists to handle him. i rushed him to the one closest to me. 7 hours later when the doctor got to see him. again Michael was fine. now i am being told my all that Michael needs to see mental people and be put in paitent at mental hospital. just as i was waiting for our intake i took him to see his pediatrian who knows this story. but then it HAPPENED...MICHAEL HAD AN EPISODE RIGHT IN HIS OFFICE. my doctor video taped it and called me late that night. i was asked to rush Michael to LIJ. episodes were worse by now and so first we were put in quarantine because he tested positive for mycroplasma. then he was sedated and underwent 2 MRI'S, AN MRA AND A LUMBAR PUNCTURE. A mass was discovered on his white mylen sheath. a brain biopsy was done and so we were discharged the next day and again told to follow up with a pediatric pysciortrist. every said the mass on his brain was nothing but scar tissue and the myroplasma (so probably was no asthma attack to begin with) and bizzare episodes were not related. i was discharged oct 27th and was called the next morning to come in immediately that Michael's biopsy was A.D.E.M. went for 5 days of intravenious steroids which we take orally by mouth. had to follow up with mental people because Michael is still on resperital "meds and have follow up visit with the neurologist on the 23rd. so ok now episode are still there but no where like they were. but cant send him to school so he is home schooled. i cant go to work. i am under the impression he will have a follow MRI to show mass has shrunk or disappeared then he can get off meds and we return to normal life??????? I HAVE NEVER HEARD OF ANY OF THIS IN MY LIFE. so we take long walks together. no friends. i am so lost and need help


#8

hi this is Lisa, I have left message here before about my son Michael. he is 11 now. He was diagnosed back in November. second set of December MRI'S show mass is still in frontal lobe area but seems to have changed texture. he still has odd behavior and kind of episodes when he is stimulated so he is home schooled. I lost my job. have updated appointment with ped neurologist Thursday. please if anyone can help and tell me if your child has anything similar to what Michael has been going through and what your doctors are doing so I can show that his episodes are from the mass in his brain and is not from behavioral issue. they just us to keep seeing a psychiatrist.


#9

Good morning, how is your son presently? I have ADEM so I can’t give you any real suggestions about children. I simply hope you are all doing better. Maybe an update will keep a conversation going for you. Lynn


#10

sorry I haven’t been on this website in a while. I thought about just seeing how it goes over the summer. with normal activity and seeing the social worker and the psychiatrist. I can say my son was doing well. he goes from symptom free for 2 weeks then back to small attacks. his head will twist with his mouth wide open almost catatonic. then its like he shoots his head jerking saying “yah, yah”. they don’t last that long. as I have told the doctors that I believe this is due to having an environment that is controlled. he has his safe room to go to so he can jerk his body, get it out and then return to his activity. this week was bad. social worker brought me paperwork saying it seems like turrets. psychiatrist thinks he is doing this and he can control it. neurologist since it didn’t show on EEG, patted Michael on his head and told us to follow up in a year. told me to work with psychiatrist. doctors recommended are very far away from me. I am hopeless


#11

Momof4, I am so sorry that the doctors are making things so frustrating. ADEM is so difficulty I think because we all have different symptoms. Are you using a physician that is familiar with ADEM? Have you look at or talked to anyone at the Cleveland Clinic? Someone else posted this video and it is definitely informative. https://www.youtube.com/watch?v=BlrUFOj57Lk

http://my.clevelandclinic.org/services/neurological_institute/mellen-center-multiple-sclerosis/diseases-conditions/hic-acute-disseminated-encephalomyelitis
Lynn