Acute Disseminated Encephalomyelitis (ADEM) Support Group

How long your doctor put you on steroid?


#1

Hi all
My husband is diagnosed with ADEM on 14th May 18. He was in hospital for past 2 months. Now he is at home. His condition is better in terms of body movement and now he is able to speak quite frequently though he has to put a lot of efforts.
The problem now is of aggressive , violent and abusive behavior.
He was on tapering dose of steroids and now doctor has completely stopped steroids (after 2 months). I come to know though this group only that steroids need to be given for rather long time considering his infection was of severe degree. I want to know how long others were put on steroids ?
How long his mental condition will remain like this. Its very difficult for caregivers to manage him at home. Also right now his feeding is though nasal tube. Though he can swallow liquid and soft stuff but we are not able to feed him because of his aggression. This is very scary phase . Please tell me if anyone else faced a similar condition.
Thanks
Nidhi


#2

I was hospitalized for 5 1/2 months and was on a ridiculously high dose of steroids, but after that, I have not been on them since. My doctors told me 2 years to get it completely out of my system (given my concern was loosing the weight). ADEM can effect your moods. Have you addressed it with his doctor? I am sure medication for depression and anxiety are available ( I have no idea what he might need). I have remained on depression and anxiety meds since my attack. It seems to help with the moods.


#3

Daughter was on steroids for about 10 months which were tapered down to 1mg. She didn’t have any aggressive side affects but another patient in the hospital had severe symptoms where they had to put her in a side ward for the safety of the other patients, sadly. I don’t know what the outcome was though.


#4

Hi Nidhi
Took me about 2 years for the aggression, agitation & anxiety to go. Still have it a little some times. I don’t have the patience with people I used to but am aware of it so try to be around content, happy people & remove myself from others who are agitated or aggressive. It is scary for both yourself & husband, because he will still be in a confused state & hard for you to know how to help him. Unfortunately this one takes time. I used brain training (neuroplasticity), learnt something new every day after 12 months, took it slow & did what I could. It is hard to fight it but you will get there. Best wishes to you & your family. Natalie.


#5

Hi Natalie
Thanks for your response. Yes it is very difficult time for us. After how much time you were able to return to work . Right now my husband can speak few words or sentences but thats very very far from having a proper conversation. He can read but not able to write anything.
He speaks random things sometimes like he want to jump down or he has used the word “Khudkushi” which is hindi/urdu word for suicide and that makes me very frightened. There is one more issue which is he is still on nasal tube feed. Due to his aggressive behavior it will be very difficult to give nutrition or medicine to him otherwise.
Were you able to feed yourself orally ?

Thanks


#6

Hi Ronnica
Thanks for your response. How are you doing now? After how much time you were able to get back to work ?

Thanks
Nidhi


#7

I am much better. Outside of my hands, my body is better. I am an Attorney, so my job is stressful but not so physically demanding. I no longer do trial work, because of the stress and try to keep work to around 4 hours a day (@ most). My doctors have told me stress will inhibit healing. I have been without a new event the whole time, but I avoid stress, try to exercise everyday and try to have a low residue diet. It’s different and I do have some frontal lobe damage (which means I have a hard time screening what I say), which eliminates me working in court. If I had a different job (like an engineer or programmer or something), I think I would work more. I would say 7 - 12 months from last event, you might be able to go back to work, if you wouldn’t have additional stress.
The hard part is learning to back up and minimize stress.

How long has it been for you?


#8

I was very very lucky. I managed to get through it myself, because the dr’s couldn’t figure out what was wrong with me. By time they figured it out I had got myself through the worst of it. I initially could barely walk, hallucinated day and night for about 2 months, I did keep falling over, extreme fatigue lasted about 1 year, sometimes I could only do something for 10 minutes or half an hour, but I didn’t pressure myself and most people slowly regain some spontaneous recovery. He is just frightened & is horrifying for you to hear him speak like that, but please just take one day at a time, things return very slowly. One little thing each day is a good thing. I had a neuropsych assessment done after 2 years & failed half of it (I retained my executive functioning but it was slow to come back out & also my visual spatial was poor), but all of a sudden I feel quite back to normal again. I used to read with one eye closed, walk backwards, just to train the other side of my brain & also my body. It is similar to having a stroke or car injury but with practice, frustration & patience thing’s will improve. Look after yourself too! That is extremely important.


#9

Hi Ronnica
Thanks for your response. When were you hit by this disease ?
Its not me but my husband who is hit by this monster. Its been more than 2 months now. He is little better . In fact his physical condition is much better but his mental condition is still a mystery.
He says random words and many times he makes effort to speak but not able to express properly.sometimes he is very aggressive and hits those around him .Dont know how long this phase will last ?
what can I do for him to recover fast ?

Thanks
Nidhi


#10

Hi Natalie
Thanks for your reply. Its great to learn how you pushed yourself on recovery path.When were you hit by this disease ? What were your initial symptoms ?

Thanks
Nidhi


#11

Two months in is a really fast physical recovery. I am a true believer in natural assistance. So, St. John’s Wart is a supplement that should help his mood. Ginko in 2x’s the normal dose has had some good trials for results. A good multivitamin is essential and a B complex (not just b12). His testosterone and thyroid should be tested. ADEM is autoimmune, so getting sick can send him flying backwards. I got a UTI and was unable to speak or walk. So I take cranberry for urinary tract health now. Mood support vitamins may help a lot, in his situation. The other things are exercise and diet. Cooked squash! Squash is a natural antidepressant and when cooked it is still low residue. It is my super food of choice. A healthy diet is important to anyone’s mood, but he is going to be super sensitive to whatever is put in his system. Simply walking daily will help his mood and aggressive behavior. Keep in mind he is going to be very sensitive to all of this. No one likes having to deal with so many changes. It is going to be hard. Try to encourage him by asking him to help you. Tell him you would like to walk everyday and ask if he would help you stay motivated by coming with you. Let him be sad and be there to listen. He needs a safe outlet and he needs the assurance you are not going anywhere. My husband and I got a divorce 2 months before ADEM. When I got sick, he came to the hospital and never left my side. He was very encouraging for me and his constant reassurance that I was going to be ok, helped me get through. Needless to say, we are back together. Sometimes I still cry about missing my former self, he hugs me and reassures me that it is ok. He needs to know that change is not just bad, there are good thinks too! Focus on what has changed that is good. For me, I use to be a workaholic. Now I can still work, but focus more than I ever had, on my family and less on work. Find some things you need him to do to help you. That way he feels like he is contributing positively and this situation is not a huge burden. What does he do for work?


#12

About 4 years ago. Mine was very fast, felt off for an hour, felt like I had flu or virus as body was fatigued. Then thought I must have put my back/neck out because of the stiffness so I rested for 2 hours. Then in a flash I felt it in my head & body. But I knew I wasn’t having a heart attack or stroke. It was strange. Then I told my partner to turn off the lights, tv & said something was happening to me. Take me to the hospital if I don’t know who or where I am! I then vomitted & it stopped. Oddly enough I had no headache or high fever, so I thought I must not have encephalitis. Then my battle with dr’s and testing began and every time I was tested nothing came up positive. Just a C3 Complement deficiency but they couldn’t understand why (it’s rare but can be acquired post infectiously). 2 years later I was still positive so it’s likely that it’s genetic. Two deficiencies are common but not one alone. So it took a long time to get the brain/spine MRI as I was still able to stand up….they just couldn’t see it, that’s all. GP’s & ED’s are not trained in this, so unless you fall to ground, they won’t be thinking about this one. Sometimes a hospital see’s no one in a year. And when they do it’s mostly children under 10.