Acute Disseminated Encephalomyelitis (ADEM) Support Group

Any information on recovery and any possible relapse?


#1

after such a long battle, most of you know my sons story. We were very lucky and I got my son back. I fought so hard with every doctor in New York. but my son is back. so I as a parent am not doing well. I cant really leave the house, scared all the time. is there any information about a relapse or what is the chances that we beat this ADEM?


#2

Adem rarely relapses and it has a massive emotional burden on all those involved… how old iscyourcson


#3

My son will be 13 tomorrow. My son’s ADEM seemed to be with symptoms that didnt fit ADEM. he was diagnosed 2 years ago. Lesion was big and only on the right frontal lobe on the grey matter. A brain biopsy confirmed diagnosis.


#4

It was told to me by my neurologist that it almost never relapses. I’m a 57 year olds woman and was completely paralyzed this past May but I walk now. My only problems are some nerve issues in my legs. Sometimes it’s a bit difficult to walk but I can. I’m told I won’t get any better now but I’m grateful that I can function. I am not worried about it coming back and you shouldn’t either. It’s very rare and the one thing I never do is worry about things that are unlikely to happen. It will also effect your son. He needs to live with positivity and believe that he will be fine, not fear of the worst. Good luck!!


#5

I’m so sorry to hear of this. No child that young should be going’ through adem but the only saving words I can offer is that it’s not terminal and it will improve with time… I got Adem 5 4 moths ago that’s now turned tom Ms…

Gerry Constantatos

Tel: 078XX XXX XXX

(Number removed by modsupport for the member’s privacy protection. Please PM Gerry for his phone number if you’d like to call him.)


#6

One topic I don’t see many mention is “cause”. At the time when my diagnosis was suggested to be


#7

ADEM, many blood tests were done for Bacterial and Viral. Yes, there was Streptococcus fairly high, but an Internal virus came back very high and active. Since my ADEM was caused by a virus, my Doctor suggested changing my diet. Including anti-viral foods. That was 15 Months ago. I feel so much better. Getting my strength and energy back. I’m still not walking like I was previously, before ADEM came on, but I am a lot better. My Dr. focused on the cause or I would not be where I am. When you look at the causes of ADEM, there are three possibilities listed. Bacterial, Viral and Parasites. Parasites were ruled out.


#8

Hello everyone… I have a question… Am I supposed to feel depressed or did anyone else go through depression if so how did you deal with it and does anyone have any tips for me that I can use for depression? Thanks everyone


#9

my sons neurologist could not identify the cause of his ADEM. my son had the antibodies for mycoplasma, but like chicken pox, it just showed that he HAD mycoplasma and could not be sure that maybe he had it a long time ago or if is was active and related to the ADEM. Gerry I am not sure that is true, I have heard of cases that made ADEM terminal. I am told that if a relapse should happen it would be called something else. of course I hope I am wrong. MrsDurley86…how could you not be depressed??? even my young son was put on Prozac for a bit. I soon took him off that and had him see a therapist.


#10

Hello Leslie.
I am fairly new to this sight. I have read that you should never believe it when told that you will not improve any more. You may plateau but progress can still be made years down the line. I know that false hope is bad but you still need to have hope to make any progress. My sister was in a coma for 5 weeks and a vegetative state for four months. She emerged completely paralysed and we were told that she would probably never support her own head. She can. She has gained some use and a lot of movement in her right arm and a little movement in her left arm, and she moved her right foot yesterday. She still has a ridiculously long way to go, she may not get to where she wants to be but she has come an amazingly long way and is making slow progress all the time.

Zora


#11

My granddaughter was diagnosed with ADEM december of 2016, She has been through so much to get back much of her vision and much of her balance. She is unable to speak clearly or process thoughts very quickly. That being said, she got the flu and has relapsed. She is presently in PICU in the hosp. where she was treated 2 yrs. ago. Right now she is breathing on her own, can swallow saliva but is scheduled for a g-tube because she is so weak. She cannot move her arms, has some movement in her legs and response to pain stimuli. She has had plasmapheresis and ivig. Can someone who has dealt with a relapse give me some hope. I am devastated as are her parents.


#12

What is your granddaughter’s first name, so I can pray for you all.

Lynn


#13

Tess, how old is your granddaughter? There isn’t a lot of information or an exact science to “what happens next”. you are not alone here and would love to help. I think Dr. Greenberg said it best that you cant rule out what the A.D.E.M. does to the brain but if you have something on your brain that SHOULDNT be there, that can throw curve balls of a whole different type of symptoms. deal with what you know and make sure to get reports from her doctors, tests results. did she get MRI’S and Lumber puncture? what were the results? these are things that could help her. prayers are being sent. be strong and hope all gets better soon.
Lisa


#14

Thank you for your prayers. Her name is Natasha. She is now 5 yrs. old. She has had MRI and has the spots on her brain and also cervical spine. Her lumbar puncture was ok. The first time around she was in PICU for 1 month and in hosp. for 2 1/2 months. She has now been in PICU since 1-19


#15

Again i am not a doctor, but most agree lesion is not a timer. It is an inflammation. Many meds out there to lower the inflation. Good luck and keep in touch


#16

Update on Natasha. She is still in hospital (from 1/19) Her tentative discharge date is next friday. She has regained some of her sight. She has movement in arms and legs but still cannot sit up by herself. Unable to walk. Has been talking more. She can eat pureed foods only and still has a g Tube. This seems more severe than the first time around. Is anyone familiar with the anti-mog test? There seems to be a protein that is present in the relapsing people with adem. Perhaps this could indicate if maintainence treatments of ivig should be done?