My 36 yr old son was diagnosed with ADEM on Monday. His history didn’t include any vaccinations or illnesses. He claims to have no headache. He presented very confused about the time. He thinks the year is ten years ago. He has none of the symptoms except mental confusion. Drug screens were negative as was Lyme,HIV, TB, HEPATITIS,ETC ALL NEGATIVE. Today he is on his third day of one gram of steroids. He is in a southern state hospital receiving good care I think. I live 1200 miles away. He has his mother with him and his girlfriend. Sometimes he recognizes them and sometimes not. I have a million questions. I assume a specialist is required for this rare disease. What is the timeline for recovery? We are not wealthy people but I will spend every dime I have to get him better. Where do we go from here?
The MRI shows several lesions on his brain. Some very large and some smaller.
Ok so it’s been over a week. My son was given 5 days of IV Steroids. He has gotten no better. He is actually worse to the point of being unable to speak. He can say OK, YES AND single syllable words. Will this get any better? I’m really getting a kind of scared feeling about the whole thing. This hospital seems to be getting the treatment regimen from Google. Can someone please help guide us on where to turn to? Evidently there aren’t any specialists. I don’t know where to turn. HELP,!!!
Hello JR - I'm very sorry to hear about your son's condition, but we can all relate to what you are experiencing now. Is your son being seen by a neurologist who is "white matter specialist?" ADEM is so rare that I think it's important to have a neurologist who studies conditions like ADEM. I don't know what hospital your son is being treated at but if you're not comfortable with his treatment then I would go to a larger hospital who may have seen more cases like this. Have you discussed with your doctors treating his ADEM with IVIG? Steroids and IVIG are the two most common treatment plans and my son had a very good reaction to IVIG.
With respect to timing.... ADEM can take a while to recover from. The good news I guess is that the brain can continue to heal for a year or more. Be patient with his recovery and hopefully you'll see some improvements soon.
Let us know how to support you and please follow-up with more questions or progress reports.
Was your son on any type of prescription medication? Has he or anyone in your family had M.S. Are they giving him Depo medrol. through an IV. Some of the confussion is normal for a person when there brain swells. I am 54 years old and had am ADEM 4 years ago. My ADEM was caused by Enbril the arthritius medication. Have any of the doctors at the hospital have any experience with ADEM? What part of the country is he in?
Good Luck, and please keep us posted of his condition.
You need a specialist, they exist in any comprehensive hospital, neurologists can deal with ADEM altho it is a rare
condition. When steroids did not work for my adult daughter (who was not speaking) they did plasmaparisis (sp) which removed her blood and rid it of the antibodies that were attacking her brain. She regained speech and after a long rehabilitation she regained most movement. But, because of the brain damage, she never fully recovered. Today, 7 years later, she is pretty much aware, but with manylingering issues. Yet, still, she continues to improve, slowly.
Get him to the specialists.............I am actually surprised that a non-specialist diagnosed ADEM. Especially because I do not see testing for MS or for meningitis. Did he have spinal taps? They are very telling for diagnosis. The best ;ho
spitals would be those associated with a large medical school or a place such as the Cleveland Clinic. Good ;luck. Keep talking to your son, reading, singing etc because he needs that stimulation until he starts to recover.
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.
Jr, My name is Lynn and I was diagnosed in 2013. I never had an issue with not being able to speak, but I did lose the use of my hands, in addition to other very annoying symptoms. I was diagnosed by a radiologist we know and he sent us to Vanderbilt for additional testing; where the smart guys are... Well...they had NO idea what was wrong with me and they too used GOOGLE. They tried telling me I had MS. It is a LIKE MS disease, but it's not MS. I had 4 1/2 days of cortisone IV. Long story short..after little over 2 years, I'm doing relatively well. Learned how to use my hands all over again; have some residuals symptoms there and it has changed my personality slightly, but like I said... I'm doing well. My ADEM developed from a neuro-virus. The one thing I stress to everyone is this...healing will most likely be a SLOW, frustrating process. Celebrate each and every improvement...Healing is possible. Help your son keep a positive attitude. Stress will only make the process worse. If you need links to help understand this...disease...I have a couple I could send you. You have the support of everyone on this site, as we have all being trying to cope with ADEM. Take care, Lynn
Hello,
I’m an ADEM survivor and it’ll be 5 years in September. It’s been a long road but my faith has allowed my to endure and thrive. It sounds like your son is doing better than me because I loss consciousness. I was in a coma for 2 and a half weeks. I believe plasmapheresis worked best for me. I had no control over my facial muscles. I couldn’t open my mouth and swallow. Slowly things will come back but you’ve got to be patient but push yourself to get better through rehab. He’ll get better and God speed!
I am so happy that I got some feedback from you guys and girls. My son is in Florida in Mease Dunedin (sp) near Clearwater. He was living with his mom. She is his only relative in close proximity to him. He has been given the 5 day IV steroids and we really didn't see any change. Tomorrow is his last day of IVIG. He is getting worse everyday. 4 days ago after the steroids, he wrote a letter to his girlfriend that was very meaningful. That was just 4 days ago and now he is trying to eat a napkin. He is also incontinent with his urine. He has developed a rash in his groin area from the incontinence. The doctors ordered a anti bacterial salve and some oral antibiotics. I am beginning to think the worst is going to happen.
They have put in for a transfer to Tampa General which is a much larger teaching hospital. Tampa General does not have a bed open right now. Does this sound right? I believe this is a medical emergency. Perhaps not. It is just so confusing of how he could look like he was improving and then look so bad the next few days. If anyone has an opinion of Tampa General, please let me know. I know about the Cleveland clinic and read about some specialists in the Houston area. Should he be moved where he has no family to support him? IDK what the best thing is. IF anyone can get me some names of specialists to contact, I would appreciate it.
Also, when should we look to expect some even slight improvement? I just hope and pray every night that I will hear something positive the next day.
We have to take one day at a time. My daughter was born in Tampa General... It is a good hospital...The only problem is so few doctors know about ADEM. The radiologist who diagnosed me, saw only 1 other case when he was in medical school at Dartmouth 40 years earlier. That man was not in good shape and when he saw him 5 months later he was walking and doing ok. We did a lot of our learning on Cleveland's website. I personally would try Tampa and keep his mother near by him for support. My husband made my recovery what it was. Like I mentioned earlier... stress is not a benefit for ADEM. Please keep us informed and keeping asking questions if you need.
Hang in there JR. I'm sure this is hard on you being so far away. I found with my son that to get things moving at the hospital I needed to create a bit of a stir. It's sad to say but I don't think if I had caused such a commotion they would not have acted as quickly as they did. You can be an advocate for your son.
Bladder issues and mood swings tend to be common side effects of ADEM. As he begins to recover he will need to relearn many things, but hopefully he makes a strong recovery.
I would try and keep him in the Tampa area near his mom. I would suggest looking up Dr. Benjamin Greenberg with UT Southwestern in Dallas, Texas. Maybe there is a way your sons doctor can contact him for advise. He knows a lot about ADEM. I had a consultation with him and really liked him but I stayed with my current doctor since I live in Houston. Look him up on Google and you will see. I really liked him and maybe he can help. I do have a doctor located here in Houston, but he is actually an MS doctor. He is located in the Medical Center here and if you are interested I can give you his name. These doctors are difficult to get into see or speak with. A doctor calling them would probably get further faster.
JR your son needs you and his mom to be his advocates right now.
Get loud and active on his behalf. Squeaky wheel gets the grease in hospitals, so start squeaking.
ADEM is a mystery. It isn't even a disease; the acronym just describes the damage. Prepare for frustration, and prepare for everybody to be here in whatever way is helpful right now.
How is everything going JR? My Son doctor is a great one, he is Docto David Adelson from Phoenix at the Barrow neurology, that palce is amazing, i hope everything is doing great now and you can keep us update, God Bless you and your family!
My son has been transferred to a larger hospital with a more knowledgeable staff. He was given another round of high does steroids IV with little improvement. He became incontinent also. He doesn’t know when he has to go. I think that he understands everything I ask him but he can’t get the words together to communicate to me. The second round of therapy was IVIG but they stopped it because he was pulling out the IV. We got an early AM call Saturday that his BP was bottoming and he had a high fever. Septic shock. He had to be intubated . Infection was from the IV Central line they were using for plasmapheresis. They had started the first exchange a week ago. Of course septic shock has a high mortality rate above 50%. We were booking flights. Last night we got a text that they were going to extubate him. He was biting the endotracheal tube. Last night he was sitting up breathing on his own with normal vital signs. That, my friends, is a miracle. Today he is saying short sentences. The MRI from yesterday shows more lesions on his brain. Neorealism says they may be from the blob infection. He never had any of the classic symptoms of ADEM. How long does it take for him to improve vastly? Thanks.Now they are calling in a myelin specialist. Why did that take so long?
JR, what is your son's first name, so that I may pray for him. I'm sorry I don't have any ideas on time, as my condition was not of the same severity. Lynn
Hi JR - I'm sorry to hear about your son's recent struggles but I'm glad to hear he's making progress and meeting with a specialist. It's hard to say how long it can take to recover from ADEM but I would recommend measuring progress in weeks not days. I would be prepared to expect recovery taking a year. Could be shorted or could be longer, and I don't want to scare you but I would be prepared to spend a year recovering. The good news is that full recovery is possible so even if it takes a while you still can get through this. Let us know how we can help you. Ken
I am 54 years old. I had a very bad ADEM when I was 49/50 years old. It took me a good 6 to 9 months to get my bearings somewhat back. at the one year mark your son should be much better.
Recovery is different for everybody. I'm coming up on my 2 year anniversary and some things are a lot better and some things still need a lot of improvement.