My nephew was moved to in patient room after 25days in PICU on last night.
He is just opening his eyes and it seems that he might hear what we talked to him so he is crying many times . we think that Brian is scared not to see and not to respond though we might hear.
My nephew went over 5days steroid , 10days plasma exchange and 5 days IVIG.
Until Plasma exchange , he is in medically induced coma status and before applying IVIG , doctor removed tube to wake him up to see how he has been improved.
I do not know what is normal process to give him a rehap for speech, move and everything.
I hope my lovely nephew can speak mom, dad and uncle but he is still not responding.
Though he is not speaking at all, doctor ordered rehap in inpatient room with detail program schedule.
Does anyone who have similar experience to rehap though he is just opening his eyes w/o any speaking and moving and no eye contact?
In MRI picture in 5days ago, there are many inflammations into the brain and also found some injuries due to inflammations.
If he has still inflammation ongoing, I think that a continuation of steroids would be something that a qualified physician should evaluate. Did they interrupt steroids after the initial 5 days therapy? I still had small areas of active lesions after one month from start, but i was under heavy steroids since the beginning.
My nephew have a continuous steroids of today since 1,000 mg steroid was applied at first time and then after amounts of steroid have been reduced. My nephew did plasma exchange and IVIG and now he only can oprn his eye but nothing have been returned yet but he was trasnfered from PICU to inpatient room for rehab. My nephew seem too frustrated since he could not do anything he migt hear what we are talking to him.
My daughter started responding when I sang to her. The part of the brain that responds to words set to music is different from the part that just relates to words. Even so, talk to him, not about him, as hearing can be working and you don't want to have him hear uncomfortable messages now.
My daughter, an adult, spent a total of 50 days, half in ICU. Then three weeks in a rehabilitation hospital. Recovery from ADEM can be a long and difficult process. Recovery was not total. Godd luck to your nephew and family.
Hi again, When my son had completed ivig treatment, he slowly started to improve, moving, speaking, over a few weeks. He was able to walk two weeks after with a walker. He had a very similar course of treatment but was never sedated as the ICU neuro team wanted to assess his neuro status through the horrible encephalopatic, crying, screaming time. So, he was never intubated. It was hard on us but he has no memories at all of that time. He does not even really remember not being able to speak. His first memory is of a nurse giving him bread and butter the day he had his feeding tube pulled. He then spent two weeks in a rehab hospital and then was discharged home. It was slow improvement, every small thing amazing to us. I hope it is the same for your nephew. How old is he?
Thanks for your case about improvement process. Brian is 12 years old and he was induced coma in three weeks . Tube could not be out in three weeks since there was medical accident while medical team is trying to extube, brian bit the tube in 3 days of steroid initial treatment process.
after completing whole process of plasma exchange and IVIG, Brian opened his eyes and eyes are rolling in right side more than left side. Three days ago, he was moved to in inpatientroom for rehab. It seems that he could not speak, move . What he can do is opening his eyes and it seems that he might hear sounds while we are talking to him.
My sister is saying that Brian keep crying during rehab since it might be very uncomfortable or frustrated for his unable status.
From my experience, beyond drugs, the most important part of my son's recovery was rehab. My son went from being in a coma, to having IVIG, to then recovering for a week, before going to a 5 week in-patient rehab facility. In the rehab facility he went from not being able to talk or to walk or to go to the bathroom, to being a more normal version of his former self. If you can get into a rehab facility I would recommend that beyond anything else. Following in patient rehab (my son was able to walk out on his own which was unthinkable weeks before) we did several months of PT and OT to help him progress.
Glad to hear your nephew is out of a coma. Hope he continues to recover.
Really appreciated for sharing your son recovery story. I believe that all process of rehap in inpatient room is really important step to make my nephew back to normal. in two days recently, my nephew cried almost 4 hours with big sounds like showing us he is very sick and uncomfortable and frustrated for not being able to see, talk and move.
I heard happy news today from my brother in law, my nephew smiled when my brother in law was saying to Brian," did you fart to dad ? " I think that he can hear what we are talking to him and he feel some emotions like fun and in some imes, frustrating too or pain or uncomfort.
Can I ask about what is your son some improvement sign during rehap since improvement might be getting better very slowly.
This is Ken's wife. I would also add that it is ideal if your nephew is part of a pediatric in-patient rehab center (that specializes in children and so that he sees other children daily as well). I hope that your nephew continues to show signs of improvement.
Yoongil - My son started to show improvement very soon after IVIG. Within 24 hours he could open his eyes, within 48 hours he could say "no," within a week he could move his arms and could speak in short sentences (5 words). This sounds different than your nephew but this is what we experienced. The rehabilitation process is very demanding, and can be slow. My son would get very tired and irritable in the early days for rehab but that's all part of the process. I would also encourage you to measure progress in weeks and not days. The improvement can be unnoticeable day to day (and some days you may go backwards) but after each week I hope you'll be able to say "hey he could not do this last week." You may find your nephew to be more irritable or emotional as he recovers so be prepared for that. Over time those symptoms should dissipate. Good luck to your family! Ken
Yoongil said:
Hi Ken E,
Really appreciated for sharing your son recovery story. I believe that all process of rehap in inpatient room is really important step to make my nephew back to normal. in two days recently, my nephew cried almost 4 hours with big sounds like showing us he is very sick and uncomfortable and frustrated for not being able to see, talk and move.
I heard happy news today from my brother in law, my nephew smiled when my brother in law was saying to Brian," did you fart to dad ? " I think that he can hear what we are talking to him and he feel some emotions like fun and in some imes, frustrating too or pain or uncomfort.
Can I ask about what is your son some improvement sign during rehap since improvement might be getting better very slowly.
Appreciated for sharing your story in here . It is really helpful and gave us any positive hopes . whenever I share your story with my sister & brother in law, they are also relieved with positive hopes.
My sister sent me text in the morning that Brian smiled again when my sister talked to him over the phone in early morning yesterday when my brother in law said that " Brian did you fart to dad " he started to smile and in the morning, he smiled again to my sister when my sister talked to him. Though he can not do anything yet , he opened his eyes and smiled.
Brain is in hospital total for 32days (27 days in PICU) and he stopped crying now.
I believe that my lovely nephew will be back to normal soon. Thanks for your story sharing.
Great news on the smiles. Please keep us posted on your nephew. Tell your sister and her husband to be patient. The recovery for ADEM can take a while but children are so resilient. We wish you great health. Ken
Hi, if u don't mind me asking, what was not the total recovery? thx for info.
Czarina said:
My daughter started responding when I sang to her. The part of the brain that responds to words set to music is different from the part that just relates to words. Even so, talk to him, not about him, as hearing can be working and you don't want to have him hear uncomfortable messages now.
My daughter, an adult, spent a total of 50 days, half in ICU. Then three weeks in a rehabilitation hospital. Recovery from ADEM can be a long and difficult process. Recovery was not total. Godd luck to your nephew and family.
I agree. My 3 yr. old son did 3 procedures: steroids, IVIG and plasma exchange in Aug. 2014. He was in the hospital for 2 months. None of these procedures worked.
Currently, he's receiving chemo and is on his 7th chemo tx. This is the only tx that seemed to help him as he had a very rare, severe case of ADEM. He cannot see, walk or talk. He's eating by G (stomach tube), but has started eating more solid food lately.
It was by chance that an eye doctor who also specialized in neurology and saw him in early Dec. decided to start a 3 day cycle of steroids. With this, we saw improvement in his sight and other improvements. Therefore, we are going to request the doctors also administer steroids when he receives chemo. I believe the reason my son didn't respond early onto steroids is that the inflammation was too great and the demyelinating took over his brain too much. However, now I feel he's at a different state and the steroids will help him.
If anyone else has been in a similar boat w/ this, please respond. I'm very interested in how other kids, close to my son's age 3 have improved with what procedures?
Thanks and many blessings to all whose been affected by ADEM!!! I personally know, life is trying right now, but I have to keep being optimistic esp. when I see my son smile!! :)
Ender said:
If he has still inflammation ongoing, I think that a continuation of steroids would be something that a qualified physician should evaluate. Did they interrupt steroids after the initial 5 days therapy? I still had small areas of active lesions after one month from start, but i was under heavy steroids since the beginning.
I really would like to know when parents saw great improvements with ADEM. Time range? We are on 4 months post diagnosis. My son has made great improvements. However, his sight is still affected, which limits him with walking. He can hear very well. However, cannot talk and doesn't follow commands. Before ADEM, he was very social and smart. He knew his ABC's, shapes, color, counting by 2.5 years old.
I spoke with another resource, her grandson didn't have aDEM, but something similar and she stated she saw great improvements after a full year.
I would appreciate anyone else's they would be willing to share.
Also, who are the doctors, researchers studying ADEM in the US or worldwide?
Great news Yoongil. Showing progress is great. Expect things to improve slowly but hopefully completely in the future. Recovery can continue for over a year. Best, Ken
The progress from here was rapidly slow :) From swallowing food we quickly went to small words and soft foods. To us this seemed like rapid progress compared to where we had come from, but obviously there was more work to be done. I would try to do inpatient rehab for as long as possible.