I have another update. My son remains in ICU but is improving. He has had no fever for 24 hours. The MRI taken after the septic shock showed larger lesions. Possibly from the blood infection. The central line that was the cause of the infection was removed. The neuro doc is going to administer at least 2-3 more plasmapheresis procedures. He has been incontinent and tonight he told us he needed to go to the bathroom. Twice. This is major because he didn’t know when he had to go yesterday. He is starting to speak in short sentences. He understands everything communicated to him but he has trouble processing the thought to speak his thoughts. So, I think positively and pray that he continues to improve. The docs say that he will have good days and bad days. It looks like things are heading in a positive direction. My heartfelt thanks to all of you who are posting your thoughts and experiences.
JR
Will keep praying...Hang in there! Keep celebrating each and every little improvement!!!
JR thanks for sharing the news. You and your son are in our thoughts and prayers.
My daughter, now 50, had a severe ADEM experience 7 years ago. Recovery is difficult and slow. At hospital it was plasmapheresis (5 sessions) that that finally ended the acute symptoms, but the residual symptoms have lasted for years. The doctors told us that her condition would improve somewhat, but plateau at two years out. They were mistaken. After a few bumpy years she is still improving, both in physical and cognitive ways, but there is permanent damage. She cannot work and is dependent on others for many of her needs. But,her attitude, finally,is very positive. She exercises at the gym, walks on the track, does yoga for brain injured persons and attends afternoon programs of support and rehabilitation at a marvelous brain injury center here in California. She never got back to normal, but has a new normal that she can live with and has adjusted to with grace. Wishing you and your son the best outcome possible.
JR im happy that your son is responding to the treatment, big hug from Mexico!
JR you sound as desperate as I do sometimes. We too would love some answers, I believe we are all still seeking answers. My love did not have vaccinations or illnesses and no headache when he presented his symptoms were like a bad case of vertigo. He had to go thru 3 days of tests before he was finally givin steroids. for 3 days. He got to the point that he could not speak or feed himself before he got better. The steroids helped. He has had one more round of steroids in the last year, but we have not had a new MRI since Nov. of last year to see if the lesions are better. I will keep my fingers crossed for your son that the Steroids do him well! It is hard to find someone that knows alot about treatment for ADEM. I am here, I am listening and so are alot of other people that have alot of great advice and stories to share. Hand in there, We are all trying very hard to do the same! Sending good thoughts your Son's way!!!
For what is worth The steroids will help get the swelling down but find a nuro person who knows what they are doing and have dealt with ADEM before
Lori, Hi, I am Lotus, I will take those Dr's names in Houston and Dallas,because in Austin we cannot find anyone that specializes or knows much about ADEM and we need to find someone for my love as soon as possible! I want to thank you very much in advance for any help we can get with Dr's that know about this disease.
Aggie97 said:
I agree with everyone else. I was diagnosed at age 38. I live in Texas. I am not exactly sure where your son is but I can give you a doctors name in Dallas and in Houston that I have seen that have great knowledge about this disease if he is anywhere near those areas. Let me know if that will help.
Lori
Aggie 97 if you can share those names with me I would really appreciate it. We are having no luck in Austin and you would think in a city this size there would be more that are familiar with treating ADEM. Thank you!
I am sorry it has taken awhile for me to respond.
My doctor is Dr. George Hutton. He is with Baylor College of Medicine in Houston. He is located in the Medical Center downtown. He is Director of the Maxine Messenger MS Clinic .
I had a consultation for a second opinion with Dr. Benjamin Greenburg in Dallas. He is in the MS Clinic in Dallas with UT Southwestern.
Another option was my original doctor that diagnosed me. I really liked him too. The only reason I am not still with him is because he moved to College Station. Dr. Angelo Sermas. He is at Scott and White in College Station.
Dr. Sermas is the doctor that referred me to the other two doctors. He had referred me to Dr. Hutton since he was leaving Houston. When I wanted to get a second opinion I emailed him and he sent me to Dr. Greenburg. I live in Houston so I stayed with Dr. Hutton. They all were basically in agreement with my treatment. They are all good. They all know each other.
It does take a doctor referral and longer process to get in to see both Dr. Hutton and Dr. Greenburg. I am not sure how long the wait would be for Dr. Sermas since I saw him in Houston.
Good luck! I hope this helps!
Lotus said:
Aggie 97 if you can share those names with me I would really appreciate it. We are having no luck in Austin and you would think in a city this size there would be more that are familiar with treating ADEM. Thank you!
@occipital - how is it going now? My fiancé is about 4 years in and he’s getting shaky for the first time - beyond the limp on one side of his body. Major balance issues.