Mom worries

My daughter as been making fantastic progress and finished her prednisone over a week ago now. But the last few days i’ve noticed her limp seems to be coming back and she seems down. She keeps saying she feels good and she ain’t noticed her limp but i’m worried sick that all her symptoms are coming back now she’s not on steroids.

I’m glad she seems better. The day I left the hospital my symptoms seemed like they were starting again. Healing is slow! Keep watch, but it may take more time. Sounds like she’s on the right path. Keep us up to date. Lynn

Oh I do hope so we’ve got an appointment with consultant 13th so got everything crossed …thank you

Hi Becky,

I know it’s ridiculous to say “don’t worry,” because we do! I have ADEM, and mine started with a massive headache. For the first year after, every time I got a headache (which is sadly too often), I panicked, thinking I was going back to the hospital! But there are good days and bad days. Days when you or she will think, “Hey, look! It’s better!” and other days where getting out of bed is a challenge (at least for me.)

Take heart. This disease can take awhile to bounce back from, but I believe we will get better. I just passed my four year anniversary of my attack, and I’m still improving - incrementally, but still. I count it all.

Talk to the specialist about vitamins and supplements. I did a lot of research, and I found that things like ALA (alpha-lipoic-acid) and Biotin and Vitamin E are good for the brain. I don’t know about children and dosages, but ask. It cannot hurt to ask.

And you MUST ask. Everything. From having trouble urinating to fatigue to muscle soreness or weakness. Trouble grasping things. Trouble concentrating. EVERYTHING. There are so many therapies out there - I finally this last year found a neurologist who listened, and suddenly (after three years of struggling!) I went to four different physical therapies and I’m so much better!

Also, try to be patient. I imagine as a child unable to communicate things like fatigue, tired brain, trouble with words, etc. that the frustration level is high. And for you with the added worries, the stress is high. Do your best to be patient with each other. I took my husband with me to counseling because I was having trouble communicating. It really helped. (We did a puzzle project with one explaining to the other… it helped him to see how much I was having trouble. I’m not sure if that even makes sense, but it did help.)

Best of luck and keep in touch!


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Thanks Laurak to be honest she is doing fantastic. She lost use of her right side when it 1st stuck and now can walk, write and do most things she was doing b4 and you wouldn’t now anything was wrong by just looking at her. We just find if she’s overdone it her limp returns and arm goes heavy and when it happens I think oh no its coming back ! .we have to see the consultant Monday so hopefully will find out more and I have a list of questions to ask. Thank u

Hi Becky,

I don’t want to speak for everyone, but for me it is very common for symptoms to return when I’ve overdone it. And it can vary day to day what constitutes over-doing it. Some days, I wake up, and there’s nothing I can do. Others I do SO MUCH (for me now), and the next day I pay for it.

When I planned a trip to Florida to see my best friend, we planned activities (short, like 2-4 hours) every other day, then had a day of rest in between. Even so, it took me over a week to recover when I got home.

My doctor told me that if I’d broken my leg, we’d put it in a cast, and I wouldn’t use it until it healed. And even then, we’d start slow with physical therapy etc before making it do it’s full job again. ADEM is like a broken brain, but the brain has to keep doing things like making us breathe, processing images through our eyes, coordinating body movements and functions. So We’re basically making it work through its recovery.

Hope that helps. :smiley: