I haven't been on for awhile but I've been following Charlie's blog and story. It hits very close to home for me because Friday is so severely affected with SM. She had decompression surgery close to 2 years ago now. She also had PSOM and had several surgeries for that. She's about to have her 4th Birthday which makes us so happy because every birthday is very, very precious to us! I didn't think we'd make it this far.
She improved after surgery but because she wasn't diagnosed quickly enough she is has 1 to 3 pain episodes per day. Sometimes none though. She has stabilized and hasn't gotten any worse. She's on meds at a high dose.
I can tell when she's going to have a pain episode because she starts swallowing over and over. Sometimes I can distract her at this point and it will subside. Treats help with the distraction. I haven't really noticed the "shaking it off" which you described. Sometimes having to go potty will set off a pain episode so I'll get her outside and going potty helps it to subside and distracts her too.
Sending lots of hugs your way Cathy. I know the difficulties you face daily. You're an amazing person!
Terri, mom to Monday, Wednesday, Friday and Sunday