Acute Disseminated Encephalomyelitis (ADEM) Support Group

Zoelyn


#1

This is my daughter who was diagnosed with ADEM on May 5th of this year. This picture was taken before her dance recital 5 weeks after her diagnosis. She has come a long way, it makes me happy to see her doing what she loves again.


#2

She is adorable. I wish you all the best and keep her dancing!


#3

Thank you Lynn. She is doing dance camp this week and comes home some days in lots of pain, just wish I could make it better.


#4

She's a cutie. Congrats on the progress!


#5

cute, where is her pain?


#6

She has pain in her legs. She never had pain after dancing before ADEM. She has been dancing since she was 2.


#7

I just noticed we are both from Manchester NH. I got mine from the flu shot. I had an allergic reaction after my shot and was sent to the hospital, they couldnt figure out what was wrong for months until they did the mri and saw the leisons. All my pain was in my head, headaches and brain fog. They put me on new medication this week that seems to be helping alot! Good luck! Must be hard for her to explain what she feels at that age, I have a hard time to explain how it feels at my age.


#8

Yes it was difficult. I know I shouldn't feel this way but I have lost all faith and trust in our local hospital. I was made to feel like I was crazy and she was faking. We had multiple ER visits, a stay on the pediatric floor at the hospital then more ER visits. The last ER visit they were trying to tell me they needed to put a tube down her throat so she would swallow dye so they could do a test for GI issues. I looked at them and said she cannot move her left side, she is in pain to the point where I couldn't even hold her, she was looking at me like she had no idea who I was. That is when I said I want her transferred. We got to Lebanon at 530 Sunday night by 8 am Monday morning we had a diagnosis. They are fantastic up there.


#9

wow, you should feel that way. I went for my follow up for my second mri, and I dont have any new lesions, but my old ones are still there. I asked him how many ADEM cases he has seen. In his 15 year career, 5. So, my primary care, probably saw none. Its very rare. From what I have read, it is time, and rest. I used to go to the gym all the time, that will actually bring my symptoms back. I hope by sharing my experience, it might help you with hers!


#10

When we got the results her primary care doctor called me and told me he does have another patient with ADEM. so to me he should have picked up on this. I didn't go more than 2 days calling his office for a whole month. She went for her 2nd MRI and no new lesions for her as well, some of the old ones are healed. Swelling is gone on both spinal cord and brain. Thank you for sharing, it is nice to be able to talk to an adult that has what my 5 year old has. Because of her age I do not think she can tell me everything she is experiencing and going through.


#11

Interesting, my primary sent me right to neurology...did she get it anywhere around a flu shot? or immunization? because that is the first definition of ADEM. Thats good that some of hers have healed. Some of the systems are so bizarre to explain, like tingling, and it seems like everyone has different ones. But, it does kind of make sense because its nerve damage. Well, good luck to you guys and I hope she heals completely! Definitely a weird thing and hard to explain to people. I am trying to learn to slow down my life. But , its hard because I have a busy life with work and kids etc. I just cant wait to feel 100 percent again.


#12

No she didn't have any flu shots or immunizations, they believe it was viral or bacterial infection, they did take spinal fluid in Lebanon but nothing came of it. This all started in Late March by the time she was diagnosed it was May. For a week prior to the diagnosis she kept saying she was itchy, so i would try and help her itch, got itch cream, come to find out it was tingling and she couldn't explain it right. She was doing very well until dance camp this week. All week she fell asleep by 530 and slept till 6 or so in the morning. And she had lots of leg pain. Since live in the same town if you ever need anything let me know.


#13

This has been a great discussion. And it is incredibly frustrating that more doctors are not aware of this disease. The first hospital sent me home telling me I had a virus. MY CHIROPRACTOR sent me back to the hospital because HE believed me! By the time we got to the 2nd hospital, I was incoherent with shooting pains down my left side and my speech was slurred. I still think the only reason they admitted me was because they thought I was having a stroke. I had 4 doctors arguing about what I had. So frustrating.


#14

Yes the whole process of getting her diagnosed was frustrating. And what made it more frustrating (at the local hospital and her primary) to me is that when we got to CHAD in Lebanon they knew immediately something was wrong. They kept a close eye on her Sunday night and first thing in the morning the team of doctors came in did a reflex test with her foot, and immediately ordered and MRI. The local hospital and her primary never did a reflex test, they did multiple labs, I think we went to the lab 10 times in 3 weeks. I actually carried a tube of the numbing cream in my bag because the doctor would just call out of the blue and say lets get more labs. They did xrays, and scans but never ever an MRI. When we were on the pediatrics floor admitted for 3 days we were released with her on antibiotics for Lyme disease and 6 days later I was told wrong diagnosis. Lets do more labs.


#15

My 5 yr old daughter was diagnosed 3 weeks ago tomorrow. She had the flu and strep back in March and I really feel like that is when this all started. A week or two prior to her diagnosis she started getting more fatigue and not acting like herself. By the Friday before her diagnosis she was complaining of her stomach hurting. I thought that she may have a UTI and took her to my pediatrician. She did have a mild UTI and was constipated so both were treated. She worsened over the weekend and began to walk very stiff. We thought from the pain. I took her back to our pediatrician and he sent her to a children’s hospital to be evaluated for appendicitis due to her symptoms. Once there her WBC was found to be 16,000 but the urine was clear. All test ruled out appendix but they kept her to monitor over night. The next morning she was feeling a little better and the surgeon stated it was most likely something viral and stated after she ate something they would let us go home. I had a feeling that something just wasn’t right. I am a nurse and I understand that something viral has to run its course but I just didn’t feel right about it. I talked with the nurse which called the surgeons and they decided to keep her another night. Then I started feeling guilty that I was overreacting because she was feeling a little better. I got in the shower and just prayed about it. I asked God that if it were something viral to just let us go home but if something were wrong then please let them see. The surgeons only made rounds in the mornings, so when I got out of the shower. She had started not feeling well again. I looked at my husband and said they don’t see this. It wasn’t a few minutes later the whole team of surgeons walked in the room and saw her. (We were at a teaching hospital) They immediatly knew something wasn’t right and called in the pediatrician. She came in within a matter of minutes and was very thorough. She consulted the neurologist and we were scheduled for the MRI and lumbar puncture the next day. I am so thankful that we were at a hospital that had some knowledge of ADEM. By this point she wasn’t able to walk by herself and required assistance sitting up. She had some difficulty with her thought process. We were terrified. Also, this was the first week of school. She was suppose to start kindergarten and we had to balance her older sisters starting school also. After the diagnosis she was given 5 days of the IV steroid and we are now on the taper. She has improved tremendously since her diagnosis. She is pretty much back to normal. Our pediatrician is keeping her out of school until she completes the taper bc of the risk for infection and we are in “sick season”. We followed up with neurologist yesterday and he mentioned that once she completes the taper some symptom could return and she may need more. I had not even thought of that and now I am so nervous of what will happen. I also know that this is suppose to be a one time event but it has reoccurred in some cases. I just feel very overwhelmed and scared.


#16

i would be happy to go over my experiences with you. my email is ■■■■■■■■■■■■■■■■■. If you ever want to chat or ask questions. My Zoelyn is 2 years since diagnosis


#17

Thank you! Has she had a problems since?


#18

yes she is, pain in her back, head, legs. behavioral issues, anxiety, learning issues all that were not there before this disease.


#19

When did you start noticing these issues? It has been 3 weeks since she was diagnosed and started treatment. So far, I have only seen improvement. She will be 6 next Friday. She seems ok with school work. We have been working on it. I haven’t noticed anything with her behavior yet but I know it is still early. She is very calm to be on so much steroid. I just figure that is because that is how much she needs it. Didn’t you say that your daughter had to do more than the one taper? If so, how long after she stopped the steroids did you notice something?


#20

I noticed the issues with behavior a few weeks after treatment. She did 2 taper doses. The learning issues were noticed once she went back to school which was about 5 weeks after diagnosis. We got an IEP for her to get the extra help she needs. The pain never went away, except for when she was on steroids. She sees a neurologist every 6 months.