Acute Disseminated Encephalomyelitis (ADEM) Support Group

My daughter Alishia

Hello.... still in a bit of shock as we only found out a few days ago that my 15 yr old daughter has ADEM. She is still in hospital being treated so unsure of how things will pan out.. Just wanted to find out a little more about ADEM and how to deal with it.

Sarah -

I'm so sorry to hear about your daughter. This past summer I went through this with my 3 year old son so I can relate to what you are going through. Can you tell me more about Alishia's condition? Can she talk, walk, is she mentally "there"? Have the doctors treated her with steroids or IVIG? If Alishia has been treated already with steroids or IVIG then I suspect you have begun to see some improvements which must be encouraging. At at its worst, ADEM is really scary. My son was unable to communicate, open his eyes, or even wiggle a finger. Within 3 days he could answer yes and no to all questions and within a week and a half he was using basic sentences. We spent 5 weeks at an in-patient rehab facility teaching my son how to walk, talk and do basic things like feed himself. If the doctors think that Alishia would benefit from rehab then I would fully support that decision as it will rapidly improve her recovery. The progress with ADEM is both really quick and really slow - huge gains like being able to stand, but several more weeks before being able to walk - but remember to celebrate the victories and don't be discouraged by future obstacles. In any case hang in there and keep Alishia's spirits up. It's been 6 months since my son's diagnosis and he has recovered 100%. It's the most amazing transformation I have ever witnessed. I know Alishia will recover as well. Best of luck to you and you family.

Ken

Hi Ken

Thanks for your message. Glad your son is back to full health.

Alishia was unwell on the 19th jan with flu like symptoms which lasted for around five days, She returned to school on the tue morn but was very unresponsive, she had a science exam at 9 am which we now think she didnt sit. As soon as she got home at around 10.15am she went straight to bed and slept till seven pm, she didnt eat anything and just wasnt herself. At around nine o clock we went to bed and i went in to kiss her good night and she started freaking out saying that someone was in her room and they were trying to kill her, this went on for the next 2/3 nights. She was not eating, washing and simply didnt care about anything. We took her to A&E on the thurs night and after some tests they said she had had an allergic reaction to Day/Night nurse tablets and that the hallucinations she was having was probably due to that. By the sat morn things had got much worse and i decided that i would take her back to the hospital, we saw another doctor who after an hour of speaking to her and examining her admitted her to the ward. They then went on to give her a CT scan MRI and we had to go to Stoke On Trent for a brain scan which then showed she had abnormalities on her brain. The doctors have since told us she has ADEM. We are so lucky that she hasnt lost her speech etc and that we caught it early, however it had affected her personality, she cant be alone and has reverted back to being how she used to when she was much younger. The doctors have treated her with anti viral drugs and a 5 day high dosage steroids course. She has shown amazing strength already and im hopeful things will go back to normal soon, she is in her last year at school and has worked so hard in all of her lessons and i want her to do well in her exams. So i guess now its just a waiting game to see how she recovers.

Sarah

We're here for you!

Thanks for sharing Sarah. Our thoughts are with her.

Sarah -

From what I know through taking with other families and though my own experience, Alishia's case sounds all to familiar. Fatigue, flu like symptoms, mild fever that responds to motrin, misdiagnosis, confused docs, etc. The good news is that I believe with treatment Alishia will be fine but it may take some time. We found with my son that like Alishia he regressed both mentally and behaviorally. As an example when my son was sick and even post treatment with IVIG he preferred to wear a diaper rather than use the toilet, despite the fact that he had been potty trained for almost a year. Then following his release from the rehab center when he went to school the teachers said that he would rarely leave a teacher's side, rather he preferred the comfort and security of a teacher. Thus, I believe the slight regression you have seen is common though for my son these side effects lasted only a few months post treatment.

Every patient is different so perhaps Alishia will be able to sit for her exams and graduate but looking at my son's progress I do not think that would have been possible for him. One of the concerns we had coming out of rehab was that my son appeared normal but his ability to concentrate was significantly compromised. As an example he used to love to sit and read stories but in the month or two post ADEM he could not sit still to listen to a story. It was almost comical how unfocused he was. So as you watch Alishia progress just keep that in mind and if she can't sit for her final exams then I would be ok with that. When my son was sick we were given so many grim prognoses - leukemia, brain tumor, spinal meningitis - that the fact that we can even consider a 100% recovery is a miracle. I reminded myself of that every time I wished he was recovering faster.

My son is an identical twin, which means it's easy to compare him to his brother and to see what is different between them. Amazingly, now 6 months post ADEM diagnosis if you saw both my boys you would not know who had been sick. Alishia will get there too but I would target at least 6 months for a full recovery and up to 12 months depending on her situation. I'm sure that does not sound as encouraging as sitting for exams in a couple of months and graduating on time but considering the alternatives I was presented with the extra time is a great tradeoff.

I hope all is will with Alishia's treatment and best of luck with her recovery. My opinions are based on my one experience so take it for what it's worth.

Ken

great response Ken. Your observation on the twins and sons full recovery is really heartwarming.