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I want to thank you for adding me. I am the mother of a 21 year old daughter who was diagnosed with ADEM 7/7/15. July 4 my daughter was transported to a small rural facility for severe dizziness, nausea, and vomiting. Upon arrival at the small facility she had a low potassium level. Usually with this information and her previous spinal surgeries for tethered spinal cord she was transferred to a higher level of care. Her neurosurgeon feel it was a leaking syrinx. One of her many spinal cord abnormalities. She was sent for her MRI and CT. She was at that point diagnosed with ADEM. She has been placed on large doses of solu-medrol her blood sugars are high and on a insulin sliding scale. She starts physical therapy for left sided weakness she has no feeling in her left foot. The nystagmus is still very sever. Being a flight paramedic I feel her treatment is appropriate from what I have read. My concerns at this point is for her deficits. I see so many conflicting numbers of recovery. Any info anyone can give me regarding recovery would be so appreciated. Thank you all again.

Hi Crystal, thanks for sharing your story. Recovery varies so widely from patient to patient so it's hard to generalize what to expect, but with you being a paramedic and already having an existing relationship with a neurosurgeon, it sounds like you are in good hands. My son benefited greatly from physical therapy and I hope your daughter does as well. Please keep us posted on your daughter's progress and let us know how we can support you. Ken


My name is Lynn and I was diagnosed in May 2013. 2 years out and I'm doing relatively well. Long story short, I lost all use of my hands and had to relearn to use them. My husband is a Chiropractor and made a real difference in my healing. I still have symptoms in my hands, but I can and do pretty much everything I want with them. One important point for you is this, healing is generally slow and can bring a lot of frustration with it. Most of us will tell you the same type of thing. Celebrate every little (each and every one) improvement and keep pushing forward. Try and keep her stress free, as stress can be an enemy. Any questions or if you want to vent, we're all here for you.

Crystal what would you like to know?

I'm 1.5 years old. My whole right side was numb. A lot of the feeling is back now. Physical, occupational, and speech helped a lot. They were everything for where I am now.

When I reach my limit, my right foot goes numb, still.

Hi Crystal, the only thing i could said to you is that the recovery for ADEM takes months and the clue is to have a lot of therapy, my 6 year old (now 7) couldnt also move the entire left side of his body, he was treated with steroids PREDNISALONE and now he is doing great, the white thing on his brain (myelin) now is only 15% left, thanks God he is doing great and i know he is going to be great 100%, we are here to help you, i hope your daugther is doing great!

Thank you all again. This is the third day off high IV doses of steroids. She is taking her oral ones as prescribed. Her dizziness is still very hard for her. The left sided weekends she is going to OT for. However patience I know is the key. She is in good spirits. I am thankful for that. The steroid rage is minimal thank heavens. I know some of it isn’t the steroids but just the frustration of not being as self sufficient as she was before. My biggest challenge right now is keeping this very hard headed 21 year old positive and motivated. Once again your encouragement does truly help.

You hit the nail on the head: altered cognitive state, steroids, and stubbornness:in the long run it has wonderful results because people like us push infinitely hard to do everything humanly possible to recover.

Crystal said:

My biggest challenge right now is keeping this very hard headed 21 year old positive and motivated. Once again your encouragement does truly help.