Recently diagnosed

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.

Glad you daughter was diagnosed so promptly. From what I read based on research and information from our neurologist that practices at the University hospital and is quite knowledgeable about ADEM and MS. Relapses are more common in Adults within the first two years of an Adem attack. If there are relapses than it is most likely MS. Prayers to you and the family. I pray your daughter fully recovers. Children are resilient and recover faster than adults.

Thank you for sharing that Sydkate. Hope for more good news with time.

I feel for you. My 5 year old son was diagnosed 2 years ago. ADEM has changed our lives extremely. ADEM has cognitively delayed him and also affected his sight.

Honestly, I would keep your child home as long as possible. Let your daughter get well before you send her to school. I know when my son gets sick, he stays sick for awhile, like a month or two. It affects him differently. Also, with her diagnosis being so recent, just keep her home to be on the safe side.

Prayers to you, your daughter and family.

Thank you! She has improved so much in 3 weeks. We are praying the worst is behind us.

Thank you! She has really improved a lot since we have been home and I plan to keep her home for awhile. And longer if I need to. So far she seems fine cognitively. She is a little more emotional than usual, but I am not sure if that is the steroids or ADEM.
I will pray for your son and your family!