Acute Disseminated Encephalomyelitis (ADEM) Support Group

Welcome


#1

My name is Lynn and I was diagnosed with ADEM in May 2013. Not sure how much you know. Some important information is that we all have different symptoms depending where in the body it hits. Healing is possible, however, it can be a very slow process. Frustration and stress is our worse enemy. I tell everyone to try and have patience. Always think about recovery on a day to day basis…How are you today compared to yesterday, a week ago or the day you very diagnosed. Celebrate each and every little improvement. You are welcome to read any information you can find on our site. If you need more, we have links we can share. Questions…ask. Want to vent…go ahead. I lost full function of my hands and had to learn how to use them again. That took about 6 months or so. Most of us are left with some type of disability. All in all, I can’t complain. We have lots of parents on the site who have dealt with issues just like yours, that are more than willing to share info with you. Simply ask a question and you will get responses. You need to give it time, as frustrating as it is. Please keep us updated! I wish you the best. Lynn


#2

Hi. Thanks. I’m very new to ADEM. A question I just thought of today and Google hasn’t really been a help with, is. While still recovering from ADEM, are there added risks with catching colds or flu bugs etc? My son who has only been home since the 3rd starts kindergarten in September… I just wanted to know what to expect with the germs in elementary schools. Thanks.


#3

#4

I was diagnosed as an adult, so my situation is a little different than your son. A new cold or flu may cause you some fear, but keep in mind, it may be JUST a cold or flu. Doctors have recommended that I stay away from any vaccinations, because our immune systems have been affected. Take one day at a time and try to keep his immune symptom up by good nutrition and general good health.
Lynn


#5

Thank for the speedy reply. I just really dont want my son or our little family to go through that again. I’m still waiting for the brain injury fund place to call me so they can start therapies with him. Hes doing better every day. I’ve just been watching him and looking for any sign of a seizure or relapse. The only treatment they didn’t give him was the plasma pharisees (sp?) Because they would have to keep him sedated for roughly 4 hours and cause hes so little they didn’t want to put him through that. Thankfully the ivig helped him most. But it was very hard on our family me being away from my other 3 kids for the 2 weeks. Really hoping he only gets better. Not worse.


#6

Hi

I was told that after 6 months, whatever deficiencies I still have will stay and that there will be no more improvement. Do you believe this to be true or are people still getting better later than 6 months?

Thank you!


#7

This isn’t a recurring disease. According to everyone I’ve talked to, it only happens once and if it happens again it’s not ADEM.

I seem to get colds a lot now and I used to have a very strong immune system as I spent most of my life in EMS, but I don’t worry about the ADEM recurring.


#8

We are fairly new to ADEM. So I dont know. My son is still in the first month since his attack on July 21st 2018. I’m really hoping that it never returns. I’ve read lots of people have residual effects. So far my biggest concern for my son is that he doesn’t have any more seizures. The majority of his damage was to the brain stem. Neurologists said something about the brain stem pools having the most damage. For now we are taking it day by day.


#9

I’m glad he’s improving. Remember…take of yourself as well.


#10

I’m trying to. But obviously I’m exhausted. I’m a single mom of 4. So having time for myself is hard to come by. I’m just glad my son is recovering well so far.


#11

Hi. My son has his first pediatrician appointment tomorrow morning. Is there anything specific I should ask? Just dont want to forget anything.