Our daughter was diagnosed in October 2014 with ADEM. She was having s hard time staying awake, losing the ability to walk and move her left side at all. We received treatments of steroids and two weeks later we had relapsed, this time her optic nerves were affecred and she had lost almost all eye sight. We were treated again with steroids and IVIG. Since then she had made a complete recovery, her follow up MRI in December looked good. Last week was the first time she had been “sick” with anything since her ADEM. She had mycoplasma and an ear infection. On Sunday she started having episodes where she would show aggressive behavior and seemed to be in pain. We are now back at UMC seeing our Nurologist and having an MRI done first thing tomorrow morning. Just wondering if anyone else had long term problems or similar situations to ours?
I’m 40 years old but have seemed to get worse after coming off steroids. I got worse even though my MRIs were normal. I ended up with vertigo and something called Lack of Proprioception, and currently have to use a walker. I have finally evened out to where I feel good but I still struggle with walking. So far, no more set backs. I am currently on CellCept and
Have they checked for NMO? Neuromyelitis Optica. It is similar to ADEM. My doctor checked me for that.
I wish you luck!
Hi, I am sorry you have to deal with this horrible disease. Your daughter's case starts out similar to my son's father's (40yro), even received the same treatments, IVIG, etc. however he was in a coma for almost 3 months during the whole process and had to relearn everything, walking, talking, eating, etc. he ended up with myopathy and neuropathy, muscle and nerve diseases.
It has been a year this month since my son's father was released from the rehab center, he has progressed tremendously but we have had to deal with minor neurological issues like short term memory loss and confusion. I say these are minor things considering the amount of swelling that impacted his brain, the doctors thought much worse as he came out of his coma.
From my understanding and speaking with numerous doctors, it is highly unlikely for ADEM to re-occur. If symptoms where to come back within months that patients that were initially diagnosed with ADEM, they could go on to develop MS.
If the mycoplasma and an ear infection are somehow related or you don't get any answers, MS may be something you want to bring up to the doctors. But it seems as though it's been quite some time since she was initially diagnosed with the ADEM, I am hoping these new illnesses have nothing to do with it.
He has had a few colds that luckily didn't cause any other symptoms. I wish I had a more knowledgeable response for you. But I do want to let you know your daughter is in my thoughts. Please update us as you find out.
Much love from PA, Hang in there Mama.
Hello Elaine - Sorry to hear about your daughter's recent symptoms. Good luck with the MRI and let us know what they find out. I too have heard that relapses are very uncommon but you're right to be cautious and it's great that you were able to get an MRI scheduled so quickly. Let us know how we can help you. Ken
So sorry to hear about your daughter. My son's optic nerves are affected from ADEM. Currently, he still cannot see b/cof ADEM. He can see shadows, but still struggles w/ his sight. He was diagnosed in Aug. 2014. He was at the Children's Hospital for a total of almost 2 months. He's improved significantly from Oct. 2014. However, he still has a long ways to go. We are praying it happens sooner than later. I'm so glad you started this discussion b/c I'm also interested in possible long term effects. I know everyone is different, but I would just like to hear what other's have gone thru. Thanks
We were also told by the dr thet our daughter does have some damage to her optic nerves. She can see but she’s still too young to really cooperate and tell us what exactly she sees or if things are blurry. Dr’s don’t know what caused her ADEM, she had not been sick or recently vaccinated prior to getting it. So, our dr’s can’t say for sure if she will have problems again because we aren’t sure what triggered it the first time. Her MRI was clear, no signs of ADEM returning and the areas where she was affected when first diagnosed are healing and fading so that’s good! We are not sure what caused her to feel so bad and have terrible episodes. The dr said it could be headaches but personally I think it had a lot to do with the antibiotics she was on for the ear infection and mycoplasma. She is pretty much back to her normal self this week, Prsise the Lord! We follow up again with opthsmoligist and Nurologist in September unless we have any problems before then.
hello everyone,
I just copied some of these responses for the notes i try to keep on adem. I started printing, taking notes on things since this past Nov. when my world got turned upside down by adem. I was diagnosed 12/2008. I have had minor issues since then but for pain I was given vicodin by my neuro. He wasnt able to perscribe that to me anymore so he sent me to pain management to continue getting my rx. that has been a journey in itself, but this past winter was the 1st winter w/o my pain meds (so i think that has much to do w/ my circumstance). i spent many days at home in bed unable to move due to pain and mobility issues. i now have a cane i use only when i see that as a last resort to get around. i am constantly in some sort of pain, however, the intensity varies. once i finally found a pain management dr. to see me, i got a tens unit which helps but is a pain w/ all of the wires, etc. My last apt the dr. said that there is nothing to 'make me better', but to mask the pain my options are pain pills again or the implanted spinal cord simulator. that apt was the beginning of this month and i told the pain dr i wanted to talk to the neuro first (which was a huge mistake b/c i should have told him to start me on the meds then). i work very little b/c of this, about a day or 2 a week for only about 4 hours, and there have been days i've planned to work, but unable to b/c of mobility issues.
my neuro and pain dr say that this is all b/c of my nerves. i currently take a dozen pills a day and have the tens unit. i still do not understand how if i was diagnosed in 2008, why these new issues just came about. i cant find much info about that b/c adem is a 'rare' condition. also, i wanted to throw in that for yrs the neuro was giving me MRIs to rule out MS and he did till this recent stuff, however, i just recently had another MRI (almost 2yrs since the one b4) and it came back 'normal'. all of the MRIs i've had in past years have came back normal as Aggie97 has also said.
Glad to hear your daughter is doing well! My son's doctors didn't know the reasons why he got sick either. Same situation as your's. How long did it take your daughter to improve? thx
Elaine - Haley'sMom said:
We were also told by the dr thet our daughter does have some damage to her optic nerves. She can see but she's still too young to really cooperate and tell us what exactly she sees or if things are blurry. Dr's don't know what caused her ADEM, she had not been sick or recently vaccinated prior to getting it. So, our dr's can't say for sure if she will have problems again because we aren't sure what triggered it the first time. Her MRI was clear, no signs of ADEM returning and the areas where she was affected when first diagnosed are healing and fading so that's good! We are not sure what caused her to feel so bad and have terrible episodes. The dr said it could be headaches but personally I think it had a lot to do with the antibiotics she was on for the ear infection and mycoplasma. She is pretty much back to her normal self this week, Prsise the Lord! We follow up again with opthsmoligist and Nurologist in September unless we have any problems before then.
It took her about a month then she relapsed with optic nerves being affected and took about a week that time. The opthsmoligist said she does have some damage to her optic nerves but it’s still too early to see exactly how much.
JP said:
Glad to hear your daughter is doing well! My son's doctors didn't know the reasons why he got sick either. Same situation as your's. How long did it take your daughter to improve? thx
Elaine - Haley'sMom said:We were also told by the dr thet our daughter does have some damage to her optic nerves. She can see but she's still too young to really cooperate and tell us what exactly she sees or if things are blurry. Dr's don't know what caused her ADEM, she had not been sick or recently vaccinated prior to getting it. So, our dr's can't say for sure if she will have problems again because we aren't sure what triggered it the first time. Her MRI was clear, no signs of ADEM returning and the areas where she was affected when first diagnosed are healing and fading so that's good! We are not sure what caused her to feel so bad and have terrible episodes. The dr said it could be headaches but personally I think it had a lot to do with the antibiotics she was on for the ear infection and mycoplasma. She is pretty much back to her normal self this week, Prsise the Lord! We follow up again with opthsmoligist and Nurologist in September unless we have any problems before then.
I think my daughter Emmy, age 6 at the time, has had it so bad. She broke her arm, showed symptoms of SOMETHING going on with headaches and nausea. 3 months later, her behavior was bad, but not until she bumped her head, very lightly, did she go into a seizure. MRI next day showed 50% of her brain effected and woke 10 days later with dystonia in her left side, along with weakened speech. She did IVIG and steroids and acyclovir, since her EEG resembled HPV. All tests completely clear, even spinal fluid! we moved to inpatient therapy and left hospital 45 days later because she HATED the hospital and the ADEM didn't effect her intellegence at all. Well, within a month she relapsed and the military hospital we had to go to did nothing. We decided to change insurance and pay the cap and moved her back to the initial children's hospital. MRI showed 2 new lesions and her once fine basal ganglia was now ruined and her right side now was weakened and she couldn't use it. Plasmapheresis, IVIG and chemotherapy the second stay. That was in November, we did 2 more months of chemo and 1 month of IVIG. We have been on steroids since and since her MRIs have been stable since November, we started weaning off steroids.
I really feel hopeless because we did HGH doses of Omega 3s, like 4-8 GRAMS a day for a while, and even used Frankincense and Brain Power YL essential oils. The funny thing is is that her lesions NEVER shrunk until she had her first out of hospital seizure in April and one lesion finally started shrinking. She had just had an MRI 2 weeks before so I truly believe the seizure brought needed nutrients up to her brain to heal, but her neurologist HATES seizures (personally so do we, but in retrospect it is the only thing that seems to have helped her brain). Since the seizure she regained trunk control, can roll around on the floor to get around and even speaks louder! I finally bought "What To Do About Your Brain Injured Child" and started some of his recommendations for therapy at home.
I just pray that whatever caused the autoimmune ADEM is OVER! I hope this somewhat helpful and not discouraging.
Yes!! We are going on 6 years and every time my daughter gets sick…she regresses, including aggressive behavior.
Wow, interesting my son did similar treatments to your daughter. Please message me. thx
Em's Mom said:
I think my daughter Emmy, age 6 at the time, has had it so bad. She broke her arm, showed symptoms of SOMETHING going on with headaches and nausea. 3 months later, her behavior was bad, but not until she bumped her head, very lightly, did she go into a seizure. MRI next day showed 50% of her brain effected and woke 10 days later with dystonia in her left side, along with weakened speech. She did IVIG and steroids and acyclovir, since her EEG resembled HPV. All tests completely clear, even spinal fluid! we moved to inpatient therapy and left hospital 45 days later because she HATED the hospital and the ADEM didn't effect her intellegence at all. Well, within a month she relapsed and the military hospital we had to go to did nothing. We decided to change insurance and pay the cap and moved her back to the initial children's hospital. MRI showed 2 new lesions and her once fine basal ganglia was now ruined and her right side now was weakened and she couldn't use it. Plasmapheresis, IVIG and chemotherapy the second stay. That was in November, we did 2 more months of chemo and 1 month of IVIG. We have been on steroids since and since her MRIs have been stable since November, we started weaning off steroids.
I really feel hopeless because we did HGH doses of Omega 3s, like 4-8 GRAMS a day for a while, and even used Frankincense and Brain Power YL essential oils. The funny thing is is that her lesions NEVER shrunk until she had her first out of hospital seizure in April and one lesion finally started shrinking. She had just had an MRI 2 weeks before so I truly believe the seizure brought needed nutrients up to her brain to heal, but her neurologist HATES seizures (personally so do we, but in retrospect it is the only thing that seems to have helped her brain). Since the seizure she regained trunk control, can roll around on the floor to get around and even speaks louder! I finally bought "What To Do About Your Brain Injured Child" and started some of his recommendations for therapy at home.
I just pray that whatever caused the autoimmune ADEM is OVER! I hope this somewhat helpful and not discouraging.
Hi Elaine. My nightmare for my 10 year old son began sept 9th, 2015. also was diagnosed with Mycoplasma, which they said caused his A.D.E.M. his ONLY symptoms were these episodes of almost like seizures but he would shake and his body looked like he was having a painful electric shock and he would scream. took 4 or 5 hospitals ER'S to finally find he had a mass in his frontal lobe. biopsy was A.D.EM. and went through the protocol of IV steroids for 5 days and then taper off. December's newest MRI shows it is still there but seems to have changed texture (what ever the hell that means) Long Island Jewish Neurologist brought in NYU experts. no plan yet and we will wait for another couple of months till new MRI. in 3 to 4 months. meanwhile I am told to work with a psycortrist about these EPISODES. he is home schooled. pshycortrist isn't going to do anything except to monitor him and treat him as having behavioral problems and neurologist wont commit that these episodes are from the brain. STUCK IN LIMBO. any suggestions, any comments....any advice????
Elaine can you please explain episodes????
Hey guys, sorry I haven’t kept up with comments. Thank you to everyone who has commented. Haley just turned 3 in December and is doing great! To answer some questions, her first episode really consisted of being VERY lethargic, literally could not stay awake for more than a few minutes and loosing the ability to walk, becoming nearly paralyzed on her entire left side. This was the first episode when she was diagnosed with ADEM. The second episode she became almost blind because of where the ADEM spots developed on her brain (both optic nerves.) she underwent another treatment of steroids along with five treatments of IVIG. Since this second round of treatments she has not shown any signs of ADEM. We followed up every 6 months with MRI’s and the spots all were slowly fading. We still aren’t sure what caused her ADEM. We heard that illness, such as flu etc. or immunizations could cause it but Haley had not been sick (even with a cold) or had immunizations prior her having ADEM. Thanks again for everyone’s comments, I will try to keep up better!
Elaine