Acute Disseminated Encephalomyelitis (ADEM) Support Group

6 year old nephew just diagnosed

My 6 year old nephew was just diagnosed yesterday. I am a RN but I work in Labor & Delivery, so don’t know a whole lot about this.

He had the flu and strep about 6 weeks ago. Rediagnosed with strep about 3 weeks ago. He seemed to be better.
Friday --fever, painful swollowing and (+) strep test and started on stronger antibiotics.
Saturday–complaining of headache, feeling tired and having nausea and vomiting(not unusual at all with strep and antibiotics)
Sunday afternoon–became lethargic and wasn’t making sense when he was talking and taken to ER
At ER–started on IV, given IV antibiotics and chest Xray was negative, spinal tap done. no bacterial meningitis on tap. My brother called me and I said to get him transferred to Childrens Hospital Dallas. Neurologically continued to deteriorate.
Transferred-CT done and negative. Monitored overnight with plan for MRI in the morning. He was still breathing on his own, but almost unresponsive.
Monday morning–MRI done with some abnormalities seen, They were thinking maybe viral meningitis. About 1 hour later got a text saying ADEM.
He was then intubated so they could place a central line and do MRI of spine. By evening, he was intubated, IV steroids started and plamsa exchange was started.
Tuesday(today) MRI done. He started having seizures. They were going to try to extubate him, not sure if they still are. IV immunoglobulin was to be started today, not sure if it was.

My brother is really discouraged by the seizures. And I know he is just plain exhausted, so I haven’t gotten a whole lot of information today.

I feel like he was diagnosed fairly quickly. And he is at a great hospital. His treatment seems to be what is recommended.

Any additional info would be greatly appreciated.

Aunt Michele

You can ask questions of other parents who have or are dealing with the same type of situation. Start a question or comment under a NEW TOPIC and you should have several responses. Adults and children generally are slightly different cases. I’m sure you’ll get comments.

I’m so sorry to hear about your nephew. The treatment they have implemented is what most have gone through. My Granddaughter diagnosed when she was three, she is presently in hosp. with a relapse as she got the flu and this was the result. She remained intubated the first time for over a week, this time was about 4 days. She has had a couple of MRI at this point. The white patches on the brain were there and also some on her cervical spine. She presently is blind (but now we think she can see shadows), has no movement in upper limbs (yesterday moved 1 finger slightly) and no speech. The road to recovery is long. Her optic nerves are intact so it is a communication issue from brain to eyes. The fact that she moved something means nerves may be coming back. She can smile now. The first time she was in hosp. for 9 1/2 weeks. We are hoping for less this time. Everyone is different. Sometimes kids can come out of this fairly soon others it is a lengthy struggle. It is important to support parents. It is pretty devastating to see the little ones so debilitated. Before she had this relapse, she had regained her sight and much of her speech and she could walk. So, we are pretty much at square one with this. There are specialists in this in Boston Childrens and Philadelphia. The treatment that your nephew is receiving at this point is what is recommended. This requires much patience and tenacity. Just post on here and many people will give you more info. Good Luck Grandma Eileen

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My little boy (nearly 3 at the time) was diagnosed last year. We took him to a&e with similar symptoms, becoming increasingly unresponsive. We told ADEM and he was started on steroids which didn’t seem to do much as he started tensing quite violently. They weren’t sure if this was a seizure or just frustration at no being able to talk/move as much at the time. He was ventilated and transferred to children’s ICU where the steroids were continued and he was given 3lots of plasma exchange. Scans were showing it wasn’t seizures and after his third lot of plasma he started to make very small steps forward, opening his eyes but no recognition at first, then started to focus more, after a few weeks he started to move fingers, hands. All in all was a quick recovery from what I have read about ADEM (6weeks in all) but i know how frustrating and scary it was not being able to be given a definiate timeframe/answer. Sending lots of positive thoughts your way. Stay positive xx

I know how scary all this must be to your family. I don’t know if medicine is getting better for detecting ADEM or ADEM is non that rare anymore. if I am correct, that children’s hospital will have a Dr. Greenberg there. he has more experience with these type of auto-immune issues. if you are not be treated by him…find him. Here is the place where we support each other. message me anytime.
Lisa

Thank you so much for all the info! It really does help with the waiting!

Aunt Michele

I just confirmed with my sister in law. Dr. Greenberg is one of his doctors. He couldn’t be in better hands!!

I’m so sorryto hear about your nephew . I’m new here and very thankful that this forum exist so we can exchange our experiences. Every child’s recovery with adem is different and I thought that my son who got ADEM in January this year recovered very quickly. He is 10 and got it after shingles just one day he stopped walking, had headaches, vomitting, double vision, was trembling and shivering, little contact with him and was speaking without sence. After 2 days he was transported to children’s hospital in Dublin and we came home after a week. Last week he finished steroids but he is not the same boy so far as he was before. Sometimes he is screaming with pain in his head at night, gets very irritated and aggresive. He can run away from home or hide somewhere and we can’t find him. I hope it will pass. He got back to walking and speaking, seeing very quick but I believe It was a power of God as there were so many people praying for him. I’ll pray for your nephew too.

Could you send some Dr Greenberg’s to Australia please! Best wishes to you all, Natalie.