Acute Disseminated Encephalomyelitis (ADEM) Support Group

ADEM attack and recovery process


#1

My sister was diagnosed with ADEM about 3 weeks ago. She is 18 years old and fully paralyzed when she was diagnosed. She couldn’t talk and see at that time. She was moved on ventilator immediately.
She was initially treated with ceteroids but no progress. Then, she was given 7 plasma exchange after that she could respond with eyes in the form of YES and NO.
Then, 5 sessions of IVIGs of dosage 0.4g/kg were administered for 5 consecutive days. Now she can only move her lips and try to talk. But after 3 weeks of treatment she is still on ventilator. Doctors said they couldn’t predict any future. They will wait and see after IVIGs.

Can anyone know what are the chances of recovery? Any personal experiences.


#2

#3

Can someone who has had similar symptoms, please response to Shehbazsahi? Lynn


#4

Hi,

3.5 years ago I personally had exactly the same!
After being patient I slowly regained feeling and movement down to just below the chest (t4).

It is a very dark time but things can get better. Since then no further improvements - but I work full time and also drive myself and enjoy my life and freedom again.

I am now 40 btw.

J


#5

ADEM Strikes again. My son was diagnosed age 3yrs 10months he lost sight, hearing, left side, speech more or less everything. Age 6yrs 6months now and goes to a normal school, lots of friends and all above have been regained. We was told this was only because he had age on his side though. His behaviour is horrendous and doesn’t retain information For long and processing information is difficult but we are very lucky we know that hope your sister gets better x


#6

My son has lost his hearing coz of ADEM n they say it’s permanent but m glad ur Henri fully recovered u give me hope my son is 2 now


#7

Hi! My son was in a similar situation just 9 months ago. He fell into deep sleep after a severe headache and MRI showed white spots in his brain. He was immediately put on IVIG followed by plasma exchange.

When he woke up, he was only able to talk. On his first therapy, he realised he couldn’t even lift up his head and he had only his speech. He sunk into total quietness for 3 days refusing to talk or respond.

After 9 months of intense therapy, he’s now able to sit up on his own, move his both hands and support his head. He’s still unable to see or walk though.

Recovery is a long journey and the path is not smooth sailing. I am still learning to understand him and his new world. He has mood swings n I try to be patience with him.


#8

my son has been diagnosed ADEM since mid-May 2017, and his condition has continued to decline until unconscious to this day. Treatment of high doses of steroids and IV IG. MRI has been done 3 times (May, August, September), his brain continues to shrink. Some doctors diagnose SSPE, metabolic abnormalities, and until now still sought the cause. We live in Indonesia, we need doctors abroad who know about the disease that befell my child. is there any doctor you can recommend to handle my sick child.


#9

So sorry to hear about your son! I hope your son’s condition will improve soon.

Is your son’s doc considering plasma exchange for him? My son’s condition did improve after the exchange.


#10

hi Joy, doctors in Indonesia have not recommended it. because my child is presumably not sick ADEM. The first MRI, showing many white matters, but subsequent MRI even showed brain shrinkage. I looking for a good doctor, who can diagnose my child’s desease.


#11

Hi, RG!

I’m sorry I don’t know any in Indonesia to recommend and hope you will find a suitable doc soon.


#12

Hi @shehbazsahi!

I am from Europe. When I was 17 years old I was diagnosed with ADEM (now I am 25 years old). At that time I was paralyzed from my chest to the feet and I lost my vision. In about 3 months I completely recovered with my movement. I was able to stand, walk and even run again. But I still have problems with my vision. So my movement and motoric ability has recovered completely, but problems with my vision will probably always stay.
I wish your sister a lot of strength and good luck!


#13

My granddaughter(age 3 at the time) was diagnosed Christmas 2015. She was unresponsive, on a ventilator and had abnormal MRI. She was in the hosp for 9 1/2 weeks. She lost all muscle control, speech and vision. She was unable to swallow. When she was released from Hosp. she had more muscle tone but was unable to stand or walk and could not see. Her hearing never left her. It will be two years this December and she can now walk. Her vision has come back enough so she can look at books. She is still unable to speak clearly and is frustrated because communication is difficult. She has behavioral issues. It seems she has lost her ‘filters’ as to what is acceptable behavior or not. This will be a long journey. Your sister evidently can hear so the eyes with yes or no are a good start. I’m sure she is panicked by her unresponsive body so you and her support system keep lifting her up and tell her that most do recover. Although, that said, its different for everyone. We know we have perhaps a lifetime of getting her to a point of being able communicate and act within normal perimeters but we are thankful to have her with us. Feel free to check in on here and ask or share what works. We are all ears and will help anyway we can.


#14

Hi

I’m so sorry your going through this. My little boy (3 years) was diagnosed in may this year. After what we were told was a suspected ear infection he became really unresponsive was taken to the HDU department where we were told he had Adem. He was put on a course of steroids which didn’t do anything, at this point he couldn’t speak, move, open his eyes. He was ventilated and taken to the ICU at Alder Hey in Liverpool (were from the midlands) where he was given 3 lots of plasma exchange and continued with the steroid treatment. After his second plasma he started to twitch his foot/ finger then day by day very slowly we started to see little bits of progress. Few more twitches of his hands, he started to move his head a little to the side but was still not awake at this point. He then opened his eyes but there was no recognition he was still staring straight through us. After a few more days he started to focus a little more when we spoke to him but only for short periods but then I thought he smiled when I was reading one of his stories but he was still on the ventilator with his mouth taped and I got the look from the nurses that said “don’t get too carried away”. Later that day I read him the book again and he moved his mouth again, it def was a smile!! They took him off the ventilator after his last plasma by which point he was a lot more focused but still no speaking and put him on a normal ward. 2 days on this ward he was rolling and moving his arms and legs and he started to make funny noises, i asked him if he was ok and he told me he needed a wee wee. Was literally the best feeling ever to hear his little voice. We weren’t sure what to expect at this point as we weren’t even prepared to have gotten to this point and had been told if he were to recover to prepare for a long term process. over the next week he was speaking more and more and remembered everything he had previously. He needed physio to get his strength and movement back which he started in alder hey but we were then transferred back to the midlands and discharged home. He’s now back at preschool and has started swimming lessons, so very very lucky to have had such a recovery and such a brave little boy. I know at the time how helpless I felt and everyone told me at the time not to look it up on the internet but even when I did it was so frustrating not to find much on adem or recovery from this. This was the only website I found that gave me a bit of hope and gave information on people’s experience of adem not just the general facts on what if is. sending lots of positive thoughts your way xx


#15

Never lose hope never! X


#16

Thanks for sharing your experience and positive thoughts.


#17

Thanks for sharing your experience and positive thoughts.
Really pleased to hear your recovery.


#18

are there any or what kind of diet do doctors or dietitians prescribe for this kind of disease? a friend of mine was admitted because of ADEM and I really want to help him at least


#19

My Sister went through the same thing, she was in a coma for about 2 weeks couldn’t see couldnt talk didnt know who we were, but Mom. We went through alot over 6 months, and still going through alot. My sister had to learn how to walk eat she still can’t write, she can read and understand a times. She has had this since april of 2015, but she is functioning and she does get to drive but not far. So be patient its going to take time Physical Therapy don’t let them not go make them go.


#20

Hello. I am new to this site and looking for the same answers as you, to try and find the chances of recovery for my sister Kaye. She is now 37 and was diagnosed with ADEM in Sep 2016. She was in a non induced coma for 5 weeks and then in a vegetative state until February 2017. She was on a ventilator and had a tracheostomy. We weren’t given much hope. She emerged in feb 17 but was fully paralysed. She couldn’t eat or talk properly and her vision had been very badly affected but she has full mental capacity. We were told that she would probably never be able to support her own head but gradually she has been making improvements, she has developed movement and some function in her right arm. She can support her own head, her speech is improving with speech therapy, although still very slurry when tired. She suffers from fatigue. She has spasticity in her left wrist and it used to be cold to the touch but after a nearly a year she is able to move it, just ever so slightly. It is hard to keep her upbeat but she tries hard to be positive. Progress is just so very slow and she worries that she will never walk again. The sad thing is nobody can tell us what the future holds for her. But hopefully Kayes progress will give you some hope. And hopefully another member can share a story of amazing progess that I can share with my sister.