My little guy (6 years old) was hospitalized and diagnosed with ADEM two weeks ago, and is slowly recovering back to his old self. We of now on the heavy steroids (prednisone) at home now, which I understand suppress the immune system and swelling in the brain. They also however make him unable to fight off infections, which of course are common in a classroom environment. Does anyone have experience of getting sick 6-8 weeks after the ADEM diagnosis? Can it trigger the brain to begin harming itself again? I am wondering if I should just home school him for a few months to stay away from possible illnesses that could trigger a relapse. So new to all this, and no docs are answering these questions for me. We will do whatever it takes to improve the odds for our little guy not to have a relapse and relive that hellish experience. I will never forget when he was lying there in a catatonic state, thinking we had lost him. Whatever it takes to fight this - if only I knew how to arm myself for battle! So much seems so unknown.
If you feel too uncomfortable sending him back to school for now, you could ask about HomeBound services (or whatever they call it in your state). Your pediatrician can order that the school provide at home educational services for a short time. That’s what we did with my daughter for about a month while we still had so many doctor appointments.
Dear worried mom:
My son was five and half when he had it and yes it is the scariest thing that we as parents, albeit being both physicians, have ever experienced. Was it just ADEM or ADEM with transverse myelitis? Ours was both.
We too got away with just pulse steroids and prolonged steroid taper.
We were admitted on a Sunday and we forced discharge on a friday even though they wanted inpatient rehab. We thought he would be happier at home. And that weekend, he became completely normal and was walking, jumping and doing taekwondo again. The following Monday we sent him to school and only did 4 hrs x 3 weeks and then full day for three weeks and summer vacation. This year, first grade, has been demanding on him, and his handwriting has regressed significantly and thankfully he was very much ahead and it doesn't show in grades yet, but it is just a matter of time. So we are having to take a second look and are considering home school so that he doesn't tire himself out and think it has something to do with his intrinsic potential. The other thing we noticed is extremely emotional ups and downs. Regardless, for your question - - go with your gut feeling. U know him the best. The steroids do create a state of transient immunosuppression where they are prone to infections and the repeat adem episodes are about 7%. However, there is no data to suggest any fever will precipitate ADEM but I will tell you since May, whenever our son did get a fever with a cold, his tiredness is out of proportion to regular fatigue in a normal cold for a otherwise healthy six year old. Also, we have issues with temperature control in him. Once, he cried because he got upset and worked himself up to a temp of 104 and had to be taken to ER. We knew it was all sympathetic outburst-but they did all kinds of tests..and the only thing that helped him was ivfluids and cooling him down, and we were out that night.
And, our life has changed drastically since all of this. We had to pull him out of taekwondo/art/piano/swimming etc as it was too much for him and before all of this..he begged us to take him to all those activities. Another thing is there will be some regression, so don't let him lag in reading etc.
I was told the biggest thing in this age group to worry about post-ADEM - they tend to become ADD/ADHD so structure helps.. but in our case.. structure just makes him more emotional.. so we have to pick and choose. We are leaning towards small private school vs. home schooling.
Hi Worriedmom -
Welcome to our community! I'm sorry to hear about your son, but I'm glad to hear he's making progress. My son contracted ADEM after being "diagnosed" with Fever of Unknown Origin, so the doctors were concerned he might be fighting a virus and that steroids would compromise his recovery. He was treated with 24 hours of IVIG and that was all.
As it relates to your question about getting sick post ADEM....similar to houstondoc, we have noticed that when our son gets sick it really wipes him out. If he gets overly tired we've also found he's more susceptible to fevers. In our experience these fevers are nerve racking and we over analyze everything looking for signs of ADEM, but to date the fevers or colds tend to be your run of the mill colds that kids get. I would not worry about school causing a relapse, in fact I think getting your son back to school may help return you to a sense of normalcy.
This may be easier said than done but I would try to put ADEM behind you and assume there will not be a relapse. There may be residual symptoms like hyper activity or loss of focus, but you can worry yourself sick remembering those dark days. We're now 2 years post ADEM and I remember those low moments like they were yesterday.
Good luck with your son's recovery and let us know if we can help in anyway.
Hi there, my son was 9 when he was diagnosed, once home he went to school part time for the next 3months we tried to choose the part of the day that held the most important subjects, during the following 6 months there were days we kept him home if he was too tired, it helped in the long run. Be aware of mood swings, my son was easily angered and would also bottle up any frustration and let it out when he was in his safe place, which was normally at home, for us it showed how tired or if he was having difficulty at school. You will need to be a bit flexible but our son enjoyed being back at school. We are now 16 months post ADEM and have not had a relapse, he has not picked up many bugs at all, something we were worried about so we gave him a supplement milkshake daily for a couple of months to help him build himself up again. I am sure it will go well but take it as it comes and celebrate the wins.
It is common to get sick after adem, I did before and after. I am surprised
He is back at school , I got discharged after 4months and I had to fight to go back to work, my Consultant wanted me off for a year due to the cognitive side and also infections as it’s very easy to contract tho getting back to normality was what I wanted and had helped
I so feel your pain having gone thru this only couple of weeks ago. My boy(9) is doing good but I am paranoid! I find myself so down and worried that this is going to happen again. he got diagnosed on 06/04/14 and was discharged from the hospital on 6/10/14 I am hoping that by the beginning of school in August he will be ready to take on the task. Please let me know how was your experience regarding school. I see my son now perfectly well but I would like to hear it from the therapists themselves. I will never forget how optimistic I was telling the neurologist "he is great" and his answer still shatters me when he said "this is not something that takes a day or two" so many questions.....
Hi, Our 2 and a half year old son, Matt was diagnosed on the 5th of March 2014. He did the IVIG treatment, intravenous steroids and an 8 week taper of oral steroids. He was discharged 4 weeks after being diagnosed. I was also terrified of him coming down with a fever. After speaking to Matt's neurologist he said that the immune system was strong enough on the oral steroids, he was at 10mg per kg at this time. He reassured me that there were many people out there that were on steroids of that dosage for other illnesses who were leading perfectly normal lives. This reassured me a lot and I became less panicky. Matt did come down with a high fever which was due to a bacterial infection but recovered nicely after taking a course of antibiotics.
Things for Matt improved a lot after he came off the steroids such as his sleeping, emotions and eating. We still have a way to go with his physical recovery but everyday he gets stronger.
Just stay positive and take each day at a time. Also take solace in the fact that a relapse in young kids is very rare.
Best of luck!
Our 6 year old contracted ADEM in Oct/2013, and for fear of getting sick again, we kept him home until January 1st. He studied at home to keep up with his school work, and his teacher came over once a week to be sure he kept on track. I found it helped me, hard to know of course how he would have done had he gone back earlier. The doctors recommended keeping him home until 2 weeks after prednisone ended, and we extended i believe a little past that. Since then he has been sick many times with colds, and has been ok, no relapse.
Wishing you all the best, it's the toughest experience we have ever lived through, but he is strong now and back at the top of his class. We are expecting nothing but a bright future ahead.
Our son was diagnosed on the 21st of July 2009, discharged home august 19, started kindergarten on time with no assistance. He did fine. I was concerned about his pre-kindergarten vaccination so held off for a year but eventually did it… Much fear even though his illness was not vaccine related… He was fine! I will say that even though he was there at school, doing well on the surface, he wasn’t learning much. He has a twin brother (a blessing or a curse?!) and to this day, Peter is roughly 6 months behind his twin academically. Progressing normally, just a bit set back. His ADEM was very severe so it’s not surprising that he wasn’t retaining much those first few months. His neurologist encouraged us to carry on as normal as relapses are very uncommon (10%) and if they are going to happen, they will. You can’t prevent it. She also said the longer he goes without a relapse, the less likely it will happen. Five years of vaccinations, colds, etc- no problems at all!
Cedarmama - What a funny coincidence. My son is also an identical twin and we say all the time that it's both a blessing and a curse (WRT ADEM that is). I agree about kindergarten - my son Ryan is about 6 months behind as well. I hope he closes the gap over time. Ken