I was a member of the old site and having difficulty getting around this site. My son having bizarre “seizure like” behavior was really bad and got worst everyday that past last September. Turned out to be a virus of mycoplasma. this virus caused a mass on his white matter of his brain and biopsy confirmed A.D.E.M. we did the steroids and taper which like seizures started to reappear. we went back on and taper. those like seizure came back. he has been on resperidone and small dose of Prozac. update to a new MRI that was just done June 8th. I am happy to report bizarre behavior is gone and mass has shrunk. He still has hyperactivity and other things not quite right but we are doing great. I just wanted to add that my sons mass was on his right frontal lobe and nothing on his spine as I was just lucky to have great doctors and I think we found it early. (it was a fight and struggle the whole time). I am writing this to say …to this day the doctors will not associate his like seizures to his A.D.E.M. if you encounter signs like my son…fight it…we are just very lucky…
Sorry this site is giving you challenges, momof4. We’re on a learning curve as well. Still, you managed to post and say what you wanted to, so that is great.
Your son is fortunate to have a Mom who has been proactive, and to have had docs who found the problem early. Thanks for the post!
Thanks for sharing you story. It gives me hope. My son was diagnosed April 2015 and is still in recovery. You mention the bizarre behavior and this is exactly what we are going through with my son. His ADEM was severe but we see very slight improvements all the time. All the best to you.
Hi Sarah. I am so interested in your story. I tried to look for your posting but nothing came up. ugh. September 8th, 2015 all was great. September 9th started our nightmare. 3 emergency room visits to local hospital. told me they were panic attacks. then told me to take him to other hospital saying he needed psychiatrist. went to that hospital by this time he was like screaming "HELP ME"and looked like he was tazzered!!! whole body flaring off over the place, then hallucinating. we were about to check him into mental hospital on the following Thursday but kept an appointment I had made way back to get his check up with his pediatrician. finally doctor saw episode and video taped it. (these doctors are not local). he called me later that night. got teams of doctors to look at video tape. I was told to rush Michael to Cohen’s children hospital I was met with 4 teams in hazmet uniforms. tests and tests then the MRI. and the diagnosis. tomorrow he is going to his graduation from 5th grade. please tell me your story…
momof4, Seenie from moderator support here.
If you click on Sarah’s avatar, and then again on her avatar on the subsequent page, you will get to the posts she’s made. It’ll be in there somewhere.
Thank you so much for making it clearer to navigate the page. It is really appreciated.
momof4, In addition to the information which you will find in the members page my son aged 31 is still in recovery. His reading, writing and language ability is slowly improving. He is talking a lot more as well. Physically there is nothing wrong with him. The largest lesion on the left side of the brain is still healing. He was diagnosed April 2015. The neurologist said it was like an entire forest that has been destroyed and everything has to grow back tree by tree. The lesions all have to heal first before the myelin can regrow. Adults take longer to heal than children because the growth rate in adults is slower. But we see slight improvements weekly. The strange behaviors that come with ADEM are still there. Sometimes I am hopeful and at times it can be quite frustrating but for the most part we have no choice but to be positive. According to our neurologist research is showing that full recovery is 2 to 3 years and not 1 year to 18 months as previously thought. Our journey is going to take some time but everyone does recover with some side effects I believe. Hearing from ADEM survivors makes it more believable that he will recover. Thank you so much for posting you story it gives me so much hope. All the best to you.
You’re welcome. Glad you asked, momof4: we’re still learning how to “drive” this machine ourselves! When someone asks, and we have to answer the questions, it helps us get more familiar with the navigation too.
can I ask what are the strange behavior??? thought we were doing great but the “episodes” are still there. not as bad as it was but I have no clue what to do? lesion, mass, what ever it is did shrink a bit. but his neurologist will not commit that episodes are from the A.D.E.M. home life is still don’t cant take him too far from home. I cant get a job. but then he seems fine for a day or 2 then we’re back to these attacks…I guess I just have to wait it out…I am not very good at this…
Your question is so timely we had the toughest weekend since last November 2015. My son aged 31 seemed to have regressed quite a bit this weekend. Not sure what brought it on. He is done with rehab but still not recovered. The rehab says it has been a year and they cannot justify his stay to the medical insurance. They used the words “fiscally irresponsible” to continue with the rehab. Our neurologist prepared us for this and said we should keep him as there as long as we can. We have enlisted the help of private tutors in addition to working with him ourselves. He has Aphasia and I have bought some books online to work with him. I have discovered in the process that his memory is much better than his writing and reading skills and his vocabulary has become quite extensive. We plan to get a cognitive rehab specialist that will tutor him at home too. We are not sure what is causing the change in his behavior. We were weaning him off Zyprexa and introduced Wellbutrin. With the Wellbutrin or whatever is causing it he was laughing so much we could not even teach him anything. He did not eat all day either. Then we introduced a low dose of the Zyprexa and he started getting extremely agitated. He urinated in the bed. He did that about 5 months ago and we thought it was over. He also started unpacking my cupboards and drawers he did this last November 2015 and has been cutting my tweezers, ripped up his T-shirt, took eggs from the fridge and just broke it on the kitchen counter tops, and cut the cell phone charger wires and did not want to sit still in the movies. He has been going for the last few months without incidence. He has been verbally abusive and does not appear remorseful. He refused to build puzzles, read or learn anything. He has been fixating on a set of keys. He opens the safe at home. Loses the keys, looks for the keys goes to the safe opens it and repeats the process the entire day. I emptied the safe and just gave him the keys because the whole process is quite frustrating. I have to constantly help him try and find keys. He also found one of my watches and cut it into pieces. His strange behavior could be attributed to a myriad of possibilities either the change in psychiatric medication, or getting better and understanding more and being frustrated as a result (this was the explanation the neurologist gave us the last time he acted out), or knowing his time at the rehab center has come to an end or I hope not a relapse but we are scheduled for a MRI in two weeks time. We are going to try and get it done sooner. This has been quite a frustrating week for the family. We are all just so exhausted and as much as I understand what he is going through it is so hard on the family. I just wish for life to be just ordinary and uneventful. I will give you an update as soon as we complete the MRI. Because my sons case was so severe and his lesions were large and extensive the neurologist wants to be proactive and prevent a relapse and has therefore scheduled chemo for August. He plans to do this every 6 months over the next two years. I totally understand how hard it is to be a caregiver. Hope this helps.
All the best to you hope your son gets better soon.
OMG Sarah, this is crazy. I so understand. I seem to also have more info on my sons illness then these doctors. I understand I am told I am lucky. I am supposed to be happy (and I am) that my son is not in wheelchair like most A.D.E.M. children/adults. his spine is clear. just one mass on his right frontal lobe. MRI’S in june showed a small reduction of the mass and so “episodes” like seizures (not seizures to doctors because they wont show on EEG. it seems like neurologist is giving me a pat on the back and lets check back in a year…I am told to just work with the . physiatrist, physiatrist wont touch my son till neurologist can figure out about the mass…so his is taking the same meds they gave him in the hospital last Oct/Nov. resperidone and Prozac. we have a new life now. we have good days and bad. don’t know either if good days are finally happening because he is safe now in this bubble environment. school is supposed to be starting in September…I have no clue how that is going to happen. but thanks for sharing. I am here listening to your story closely. please let me know how the new MRI’S go…keep us posted and good luck
Hi Sarah, You were going through so much as of your last post that I just wanted to see how things were going with your son. My lil dude is doing much better as his like seizures have calmed down. I am told it will be “hills and valley’s” with his emotions and episodes and I wonder that even though he still has very small lesion left, it has shrunk so much, it is considered healed and cured. now we just work with psychiatrist and phycologist to help with depression, anxiety and the “like” seizures. he is going back to school which is great news as we just past our one year anniversary dealing with this.
hope things are going better for you too.
Thanks for your concern it is greatly appreciated. He is still in recovery and we think it will take another year according to our neurologist. He is currently still at the cognitive rehabilitation center. His lesions on the left side of the brain were quite large has not completely healed according to the last MRI but they have shrunk in size.We just had to increase the dosage on the depression meds as he becomes very agitated when he tries to do something on the computer and he cannot. He is starting to write simple sentences and his reading is improving as well. He understand more than he can communicate. We are watching beginner software programming and today I asked him if he understands something he responded, “Oh mom, that is so basic” He is also on Adderall for concentration. My concern really is all the drugs he is on. I hope it will not create other issues. He still gets confused and we have to closely monitor him while he is getting dressed and has to be constantly supervised. He sometimes still unpacks things dismantles things but as a child he would do this to see how things works, so not sure if he is trying to make sense of how things work. I really had to change the way I look at things and accept that this is our new normal. He was so independent and left home when he went to University. I have resolved just to accept him as he is and every time we see slight improvements we are elated. He is back on social media but does not understand it too well. We closely monitor his account for his own protection but it does show that he is trying to make sense of his world. I pray and hope your son improves every day and thrives. Thank you once again for your sincere concern.
just wanted to ask Sarah how things were going. sorry my messages are long overdue. I read some of the meds your son is on as many of his symptoms are very much like my son. his days would start with excitability, overly excited. jumping on me and kissing me, to crying. then he would be very sensitive. his episodes would be like he would stare in a distance, his eye’s staring at nothing. then rocking on his knees with his hands in almost like a praying hands and just moaning…then he would look tazed on the floor shaking all over then he would like pass out. then it would start all over. THIS IS DAMAGE… yes I was weary to give him the med’s but they didn’t do anything. I cant tell ANYONE to do this. I AM NOT A DOCTOR. but I couldn’t bare to see this happen and do nothing. I stopped those other meds that did nothing and began my own OTC med’s and I can only tell you that overnight my kid is back like 85%. everyone is amazed. I am 8 weeks in and YES we still have bad days, but he goes to school now most 5 days a week and was able to play in his sax in the school spring concert and went on his first school trip in 2 years. depression is a very serious part (I think) of this disorder/disease. we are seeing a special psychologist who specializes in a new treatment called E.M.D.R. it has shown to be effective on veterans who have PSTD. it will take time as we just started this. stay strong…
My son is still in recovery. He is now able to read and write but has a very limited attention span.He still unpacks my cupboards from time to time when he wakes up at night. His memory is slowly improving. The therapist at the rehab believe that all the memories are there but because of his limited attention span he cannot function normally. But hopefully in time this will improve. He is on depression medication that has caused excessive weight gain. Since on the meds he has gain 60 lbs. Weight gain is one of the side effects of Zyprexa ( olanzapine ). As soon as he is done with rehab we want to change it or wean him off if possible. His speech is improving constantly but his frustration comes from not being able to be as independent as he was and a understanding that there are things he cannot do. He is very loving the one minute and angry the next and cries at times too. I do believe that children recover faster than adults. I will look into what you are doing for depression and discuss it with our neurologist. The medication on is on is really a cause for concern.
Hi Sarah. I have been writing all over this website and other sites as well. our neurologist has visibly saw the mass shrink and feel he is cured. every neurologist feels his symptoms are not related to ADEM. says they are treated with psychiatrist. psychiatrist says to get second opinion as she wasn’t going to treat him knowing he has a medical element. I KNEW SHE WAS CORRECT and I thanked her for not pumping my son up with psych meds. I went on the journey of going to 2 more neurologist. (now its 3 neurologists) all agreed with the diagnosis but not his symptoms. they all felt my son was doing this for attention. I get all the symptoms you described. the excitable and laughing episodes. he gets obsessive about certain things. because of his age this would seem normal unless you know your child. they tried Prozac for his ups and downs and felt it was due to depression. I knew my son and so my research landed me to know that this was just part of ADEM. then they tried clozapine. nothing got better, if anything, it made things worst.
the school district mandated me to take Michael to this doctor who is a psychiatrist but also deals with other disorders. her report was over 3 pages long of her evaluation of Michael. we spoke for a long time but I just couldn’t understand. so my surprise when I read and re-read her report. she was extremely knowledgeable on Auto-immune and inflammation she felt that these two are to blame for the nerve damage and believed that my son should at least be on anti-inflammation meds at the VERY LEAST. I was convinced she was right and had the best idea for a solution. I started with low dose aspirin, a multivitamin with IMMUNE SUPPORT, from some patience on these websites, I noticed many needed vitamin D and Biotin were good for ADEM survivors. so I give him those 2 vitamins also and just added vitamin B12 serum and Vitamin C with immune support. that usually gets through the morning. you notice right away when it wears off!!! which is why I know it works. its not perfect and I am looking for an auto-immune/homeopath doctor, but we still have to finish the E.M.D.R. which is EYE MOVEMENT DESENSITIZATION AND REPROCESSING THERAPY. of course the bad seizure I can not remove but I know this is working for now. nice to see my son again. I changed the aspirin to 2 in the am and 2 in the PM. but change to Ibuprofen every other day.
the school and family can’t believe the change in him. I hope you can show this to your doctor and may note any of this to help your son. prayers to you Sarah.