Acute Disseminated Encephalomyelitis (ADEM) Support Group

Coping with ADEM after being discharged from the hospital


#1

On May 6th my 10 year old son complained of diarrhea, abdominal pain, headache and dizziness. We thought he had a stomach bug and he stayed in bed all morning. When his Dad woke him up that afternoon my son got up and went to the bathroom. When he came out he was disoriented and could not speak. He just stared when spoken to. He had used the bathroom all over himself. Being that he was disoriented and did not respond when spoken to his Dad took him back in the bathroom to clean him up this is when it was discovered that he had a fever of 104.5. He then within minutes became unresponsive and was transported to the hospital by EMS. Every time his fever climbed he became disoriented and could not answer simple questions. After running several tests on him the 3rd day of hospitalization is when they diagnosed him with ADEM. He was first started on Rocefen and Vancomycin (days 1-3) because they didn't know what was wrong with him. They then put him on Acyclovir. After 4 days of hospitalization he was discharged. He still has headaches,sensitivity to light and noise and complains of his legs feeling wabbly. He also, gets very weak,tired, and very lethargic very quickly.I was told when he was discharged from the hospital that he needed to follow up with pediatric neurology in 4 weeks for a repeat MRI and follow up visit. However, I have been given the run around with getting him an appointment, the pediatric neurologist is booked up until the end of June. I do not know what to do. He was not discharged from the hospital on any medications they just sent him home and I am concerned about the frequent headaches that he has been having and the weakness in his legs. I read online and did research and saw that people diagnosed with this typically are treated with a corticosteroid such as Prednisone. Is it necessary to be treated with steroids? Could anyone offer me any advice?


#2

Hi, sorry to read about your son. I understand that the outcome may be the same both with or without steroids but symptoms take longer to resolve without them. My daughter was treated with steroids in hospital for 1 week and discharged on a reducing course for a further 2 weeks. Looking back I would say it took 6 months for her to feel 100%. Very worrying times due to not knowing what to expect I know. It took an additional 6 months for me to stop worrying about my girl. She is 10 now and super! All the best to your son! I hope he is able to be seen soon.


#3

Thank you so much! At least this gives me some reassurance that everything Will be okay! I have been so worried.


#4

I am so Sorry to read what your son has gone through.

I recently watched Acute Disseminated Encephalomyelitis (ADEM) by Dr. Benjamin Greenberg on You Tube and learned why they taper off medications. He is teaching class, but he taught me lot.

Sonie


#5

Hi granel. I would definitely ask your doctor about the decision not to give steroids. I'm sure there is a great reason but given the ADEM is so rare it's worth promting your doctor to make sure he has considered all options. Has your neorologist treated ADEM before? A follow-up MRI makes a lot of sense, and if they still see leisons this time around I would not be surprised if they did another MRI at 6 months or even a year. I don't think there is any urgency to get an MRI but I think they are helpful to have a new data point to track progress. Full recovery from ADEM can take a year or more, but the good news is that your son can continue to improve! You should expect fatigue but hopefully that will diminish over time. Keep us posted on your son! Ken


#6

Hello Ken E. Thank you so much! I am so glad that I found this forum, hearing every ones stories and getting advice from others on here has really been very helpful. I have been emailing back and forth with his pediatrician and she kind of danced around the question about giving the steroids. She pretty much told me to just follow up with neurology. However, he was only seen by the neurologist inpatient in the hospital. I tried calling his office because of my concerns and to ask questions and the nurse said that the neurologist said it was fine to wait until the end of June to be seen and there are no sooner appointments. I am assuming that none of these Doctors are aware of the seriousness of ADEM. I have found a neurologist on my own (not the one the hospital referred me to) and I have asked that his pediatrician give me a referral to be seen by this other neurologist for a second opinion. I just feel that the doctor my son was referred to just doesn't seem to be concerned.


#7

Granel, good for you - sometimes you need to really push these doctors to take action. Are there any children's hospital near you? If you are not already being seen by a large children's hospital then I would recommend going to one and meeting with their pediatric neurologist who specializes in "white matter." ADEM is a very rare condition so it's most likely that his pediatrician has never seen a case of ADEM and depending on the hospital the neurologist may not have seen a case as well. Anecdotally it seems that doctors who specialize in the brain's white matter are excited to see ADEM patients because it advances their understanding of the disease and exposes them to new and rare cases. Best of luck to your family. Ken


#8

**_**I so understand the run a round. if you haven’t already you can go under the Myelitis foundation. under resources, they can tell you of an A.D.E.M. specialist in your area. if none on the web page in your area, call those doctors that are near by you and ask them for a referral near you. also, my insurance company was a great help in getting not only specialist’s but also who took my plan. even though I had a 2 near by hospitals that couldn’t find what was wrong with my 10 year old son, we were rushed to a special children’s hospital by my pediatrician. they found the lesion. even when he was diagnosed , the pediatric neurologist was the one who ordered me to take my son to another specialist at NYU for a second opinion. and though we did do steroids and it did shrink I still needed went to seek more specialists to find a treatment for his symptoms.

Granel, fight for your son. do not stop looking for help. I think from your posting, you seem to already know that you are questioning this doctor. it ok to question ANY doctor. If I can be of any help, please message me.


#9

Thank you for joining and sharing. It means a lot and we are all in this together.

I’m 40 and when I was 36 I experienced virtually identical symptoms to your son and it was scary in retrospect.

You need to get a second opinion ASAP. Getting a second opinion is totally normal, accepted and expected. If a doctor has a problem with you getting a second opinion then there is something wrong with that doctor and maybe you should get a third opinion too. ADEM results in Brain Injuries and anything that helps is essential.

For ADEM survivors, Brain Injury (TBI) is the worst part for two reasons. One is that nobody every talks about it on this board. It is mind boggling to me (no pun intended) that it is never discussed here because the TBI causes a lot but not all of the problems. Basically if you have a legion then you have a TBI: and I am not a doctor, this is my experience.

Everything that you described the wobbling, light and noise sensitivity, no energy doing nothing I had that (and still have some) because of the TBI. And nobody ever told us about it in the hospital or anywhere. So frustrating. I was lucky I didn’t need medications. But I did get 1000mg of prednisone every day for two weeks in order to reduce the inflammation.

Kids bounce back really fast. Really really fast. So your son will keep getting better and better. I’m 40 so am still recovering though my family would argue that I’ve always had these traits hahaha.

For the first three years I got an MRI every six months. Absolutely do this. One because you want to know things are OK and two you absolutely for your peace of mind need to know and if there is an issue then you need to treat it. Why sit in the dark on this one? Know and do or do not. Yoda doctor says so.

You can’t ask why somebody didn’t do something because they will get defensive and pawn you off on an expert. Well fine, find an export. You have to go into 1000% advocate mode, go around the world if you have to to find the best doctor within your time, money and other operational constraints. It is probably the best bigger city for example. Yea ADEM is rare, so people do get interested and you leverage that to engage them. And tons of people have TBIs so they can all be treated.

You have done everything right. I see that you got a lot of value out of a the other replies which are awesome. If you have any questions about my take on it ask here or message me. Things are going to continue improving. Have a great day and weekend too.


#10

Hi
My husband aged 40 got diagnosed with ADEM 18th May 2018 . It took doctors 4 days to diagnose the problem while his condition was worsening. He is hospital since past 50 days and showing little improvement.Right now he has movement in limbs but not able to walk, on feeding tube and catheter , not able to talk , shows response and expresses emotions through laughing and crying but that is not very consistent.
I want to know what were your symptoms when you were diagnosed and how much you are recovered in how much time ?
Thanks


#11

Hi nidhiJ,

My husband aged 40 got diagnosed with ADEM

Thank you for sharing and reaching out. This is a difficult time, and you did the right thing coming here.

I want to know what were your symptoms when you were diagnosed

Exhaustion. Fatigue. Confusion. Couldn’t read or write, and didn’t realize that it was a problem, and I should tell somebody. Nightmares. Nausea. Dizziness. Right side limp and numb. Couldn’t see on right side (although my eyes was fine). Angry and cried a lot. Confused and overwhelmed.

how much you are recovered in how much time ?

Recovery takes time. It is different for everyone. They put me on 1000mb of steroids a day for a week or two. It has been 4.5 years, and I have improved and continue to improve. I still have you know, more to recover.

Check out this group: http://www.traumaticbraininjurysupport.org/

Your husband is recovering from the brain injury, and that is hard. This group helps people with ADEM, but not exactly brain injuries. I get a lot of help from that group because they deal with all kinds of brain injuries not only TBIs.

Message me any time.

Things will get better. Things are going to be ok.

Be well.


#12

Hi Occipital
Thanks a lot for your response.I also want to know after how much time you regained the capacity to read and write.I know I am getting restless and each case is different but that will give me a rough idea about the timeline. Currently he is not able to speak or communicate in signs though he has spoken few words after the ADEM attack.
After how much time you were able to join back work?

Thanks
Nidhi


#13

Hi Nidhi,

As you said, it is different for everyone. It took me one month to read again, and I started writing again a week after that. The writing and reading were very difficult. They required speech pathology therapy for three months. And I still have room for improvement, my recovery is not finished yet.

Returning to work, well I returned too soon. And it hurt my recovery. The survivor can not self-assess very well (I couldn’t) so we wanted to go back to work early and it makes us sicker. In my case, I have extreme fatigue. So I can work 50% of the time, and it has to be less stress. So my job title/responsibility has reduced. It took me about five months to start working again 2 hours a day 3 days a week, and it slowly increased.

You can get a lot of answers about similar experiences in the TBI group, so reach out there, too. A lot of us survivors have had brain injuries, and that might make it easier for you. Either way I’m always here.

Warm regards.


#14

Thanks a lot Occipital.My husband’s physical condition is quite better. His balance and walking is getting better. What troubles me more is his mental status. He is not able to speak. He becomes agitated and violent easily. He has an urge to bite things and has bitten my hand too. Its very depressing to see him like this. He used to be such a jovial and talkative person earlier.
Just hoping for him to be normal.


#15

Hi Occipital
I also want to know if you were still incontinent after 3 months of adem attack. My husband is off catheter now but gets agitated and angry if we keep asking him if he needs to use bathroom. He sometimes uses bathroom on his own, sometimes when we ask him but still a lot of cloth wetting. I Dont want to keep him in diapers all the time as it may cause infection. Any idea how to toilet train him quickly ?

Regards


#16

Hi Occipital
Sorry to trouble you again. Actually the progress is so slow that sometimes it gets really difficult for me to remain positive. Right now my husband is better he speaks though not fluently he cannot read more than a para and finds it very difficult to write. but what troubles me more is his cognition and behaviour. he cannot perform even a simple task like getting a glass of water from kitchen or brushing his teeth. Do you have any idea if he will be able to recover from all this.
I am feeling depressed.

Thanks
Nidhi


#17

Hi Nidhi,

The brain injury is making him do this, it is not him wanting to do it. The brain is injured and his mind is frustrated and angry. You are seeing what I consider the “hidden part of recovery” which is the hardest part. Everybody outside thinks things are great, and they are, but now another hard hard part of recovery is happening. Reach out to brain injury survivor and caregiver support groups: they truly understand what you are going through and it will help a lot.

The violence part is real and you need a plan for it. Don’t keep it hidden away hoping it will suddenly change. Develop it with trusted family and friends. Remember it is not him: it is the injury. This will be the hardest thing you ever have to deal with or close to it. Make a plan.

He will get better. His cognition will get better. It will take years but he will keep getting better.


#18

The best thing right now for him, you and your living space is adult diapers. You need to have a plan in place for when he pulls them off and fights. I don’t know about how people train in this case.


#19

He will get better over time. It is totally normal to be depressed this is an insanely difficult situation. Just keep at it he will get better.


#20

Thanks for all the time you are devoting to this group.You are right the hardest part is this hidden recovery because on the surface everything looks great. His colleagues and friends feel he is good to join office its just that he is not able to write properly. But we know there are so many issues. He is that disoriented that sometimes he opens the door to go out and turns back and sit inside the room.He is not able to use his phone for even making a call.He cannot buy milk from a grocery store.If given instructions one by one then he can perform some simple tasks but not a sequence of tasks.
His memory is fine. So he remembers everything from past and his short term memory is also getting better.
When you say your recovery is not completed yet I want to know what is remaining ? For me first thing is he becomes independent and next is he joins back work because we have 2 small kids and our family needs his support financially as well.
In your opinion how much time it will take for him to join back work ?

Thanks
Nidhi