Acute Disseminated Encephalomyelitis (ADEM) Support Group

8 year old needs back surgery

Arjuna here- this was part of another thread but I felt it required some exposure to more people so Cristal can get some tips from all of us!

Cristal (@felts31581) from Indiana has joined us because her 11 year old Daughter was unfortunately diagnosed with ADEM last year, and is set to undergo a reconstructive back surgery because she is currently paralyzed.

Having yourself or a loved one go through this is always devastating, and it would be lovely to have others message @felts31581 or simply reply to this comment to give her any recommendations.

And Cristal, please feel free to begin your own discussion thread or ask anyone here for help, we would love to guide you.

Best
Arjuna from ModSupport

@felts31581. How is your daughter doing?

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Hello, she is ok for the most part. She continues to struggle with being paralyzed and her legs have been having spasms like crazy. Her spinal reconstruction surgery is Tues Oct 8th and she is anxious. Even though she tells me she’s not I see it in her eyes. I hope that after this surgery that we can get back into therapy and continue to build her body strength back up!!

I wish you all the best and will be thinking of your family :heart: Stay strong! We are here for you.

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We are so sorry to hear that Cristal, and are rooting for your daughter so much! We would love to hear updates on your daughter’s recovery. She sounds like a tough gal, so we are anticipating the best! We are eager to hear back from you soon.

-Arjuna from ModSupport

This is such an important thread for Cristal and her daughter that we thought it deserved to have its very own thread. It was part of “Pain and Restless Legs”, and it is now it is a stand alone thread.

Seenie

Hello @felts31581, how is your daughter doing now?

-Arjuna from ModSupport

Hello, thank you for your concern. Brilynn is doing very well! Things have been very busy and I apologize for not responding earlier. She did great with surgery but the road to recovery was long and painful for not only her but me. It’s hard to see your child in that much pain and not be able to help them. However, she was just released from neurosurgery 2 weeks ago to return to normal activities! She is excited to be back at school but now struggles because she has no flex in her spine do to the rods in her back. She has lost most of what therapy had taught her do to the limitation in movement. We have been back to normal therapy for a few weeks and she is progressing well. They are re-modifying things for her and are helping her to gain back that independence that she had before surgery! Thanks for the thoughts, Cristal F