What should we expect?

My 6 year old son has been in the picu for 3 days now. 5 days after symptoms started we got the diagnosis of ADEM. Currently he has little to no movement of his body other than his hands. He has made fine motor improvement since starting steroids yesterday. He can feed himself some and is navigating the iPad. He will speak slurred single words when he really needs to but you can tell it is hard from him to get them out. He is in diapers now since he can not control his bladder. Luckily we have had no breathing problems! How long will it take for him to be up and moving? Will he just regain strength or will he have to learn it all again? How long should I plan for him to be out of school? I have so many questions that the doctors say they can’t answer. I just want him to be a normal kid again. He will be missing his first cubscout camp out next weekend… What else will be miss?

Hi Jennifer, my son was diagnosed with ADEM last year, he was admitted to hospital and got his diagnosis 2 days later, by this time he was also in diapers and sleeping most of the time, he was not interested in food or fluids. He was also put on steroids, but only about an hour after he started them he started seizing, he was put into an induced coma and spent 6 days in PICU, since then he has come along well, it’s been 15 months now and it has taken that long to gain his energy back and for him to not loose his temper easily. He is still improving and getting stronger and our specialist has said it may still be another 6 months of improvements, please be patient it will be a long road, for us we saw continual improvement but it was hard and we still have to be careful he does not get too tired. Our son still has seizures every few weeks but we are still hopeful he will grow out of them at some stage. You have a lot of questions and the answers will come clearer over the next week or so, our son was out of school for about 4 weeks but went back part time for a term and the following term still had to have occasional time off due to tiredness, we were only able to give him so much time at school because we made him rest while not in school, he did no physical activities for months after so all his energy went into getting better and going to school. He did have a quick temper though, that was a result of being tired and the recovery. Please feel free to contact me if you have any more questions, I found it hard to find good info when we first started looking. Good luck and please be patient, you have your son and that is the most important part.

Jennifer - It's great to hear that your son is responding to treatment and can move his arms. When my son had ADEM it took him several weeks to be able to feed himself and it took over a month before he could walk. I would echo kiwi's comments - progress should be measured over weeks and not over hours or days. You will find some days are better than others (I found that the end of the day was the hardest b/c my son would be most tired then) but if you look at what you son can do from one week to the next you will be better able to judge his progress. From what I have heard the recovery process can take up to 2 years with the largest improvements coming in the first 6-12 months. After my son was released from the hospital he spent 5 weeks in an in-patient rehab center to relearn basically everything. After that he was able to go right back to pre-school. Be patient and supportive of your son. It sounds like he's doing great already so just keep focusing on the positives. Remember the days in the PICU and be thankful for every new word or new sentence, first steps, ditching the diapers, etc. Let us know if you have more questions and best of luck to you all. Ken

Hi Jennifer, I am so glad to hear your son is already showing progress. Just know your son is on his own path to healing. I don’t think any ADEM case is the same. What grade is your son in? When my daughter was out of the hospital but not ready to return to school, I was able to request educational services at home for a short period. Thinking of you.

Jackson has come so far!!! He was in the picu for 4 days, then progressive care for 1 day, and a regular room for 2 days. He was then discharged to an inpatient rehab hospital where he has been receiving OT, PT, and speech. He has only been here 3 days and may get to go home tomorrow! One week since the ADEM diagnosis and he is now walking on his own, showering, getting dressed, writing, building legos, talking full sentences and holding a conversation. He is out of diapers and has almost made a full recovery! His speech is still different, he has some language deficits, and definitely acts younger than 6 but he is alive and doing wonderfully. It is amazing to get hugs again and here him say he loves me. I am concerned about his focusing and processing speeds but the doctors keep saying that is the last thing that comes back. Steroids are a miracle drug! However, he is EXTREMELY emotional from all the steroids, and he still has a month left, and is gaining weight from eating constantly.

Jennifer - It's great to hear how well Jackson is doing. A week in rehab is really amazing. We spent 5 weeks in in-patient rehab and then did PT, OT after we were discharged. Depending on how you feel about Jackson once you get discharged I would suggest getting a little PT and OT to help get him back to normal as quickly as possible. With my son I noticed after ADEM that he was a little "younger" right after his episode and certainly focus was an issue. At times he lacked (and still lacks) emotional control - prone to crying or very sensitive - and right when he was released he could not sit still for an entire bedtime story. It was all a little unnerving, but over time her began to grow out of these habits and he's basically back to normal now. Be patient and enjoy all those hugs - they make the PICU seem like ages ago even if it was less than a month ago! Ken

What kind if accommodations did you all set up when your little one went back to school?

I’m sorry to hear about your son, I will keep him in my prayers. ADEM is a nasty disease, I know you want answers but right now I think you have to see where he’s at when the treatments are over and the ADEM is gone, it shouldn’t be too long. When he’s done with that, the doctors will have a better prognosis. Hang in there, prayers don’t hurt either.

Wow, sounds like he’s doing great! It took me 45 days in the hospital and another month after I got discharged to get to that point! He’s a little beast!

just saw your post...without Ben's friends, how would we all find each other. Thank you Ben's friends. Reagan's onset was MAy 2012, she was 6 yrs old then and we went through most of what you are experiencing. Know that we are all hear for you and can understand each thing you are going through in the most unique way. The healing process for the kids will move at its own pace...the hardest part was the wait and the micro analysis of improvements and setbacks. Keep a journal of every little thing you notice that changes, you will need the reference later down the road. It took Reagan after several weeks in and out of the hospital and about 8 months until she was ready to return to school. For Reagan eating came back within a few weeks, the unsteady gait took a few months and even today you get some days where its more prevalent. We too went back to pull ups. Its a long and slow road, everyone will tell you to be patient and its true. It will test you, you have us to help. He will regain his strength and as the swelling reduces, things like his speech and other motor skills will improve. We are all here for you if you need to talk.

In regards to school accommodations: at first we just communicated a lot and provided information about ADEM to my daughter’s school and teachers. Get ready for a lot of questions about ADEM. The teachers were aware she may be emotional and tire easily. I volunteered for a little while in her classroom just so I could be available if needed. My daughter has not needed accommodations in school so far. If you feel your son needs long term accommodations be sure to ask the school about a possible 504 Plan. A 504 Plan allows accommodations in school for students with medical diagnoses. You can ask your school’s principal, school counselor or school psychologist for more information.

Thanks Mac. I’m a teacher in the school so I do know the options. He already has an IEP for speech so we are going to add a few things to it under the other health impaired flag.