Wow, that's crazy that she has it too! Liam was diagnosed at age one. It was kind of incidental but a lot of things made sense after diagnosis- screaming while pulling at the back of his head, difficulty sleeping, late on milestones. He's now 5 and the headaches contine, a few a week. But tylenol works and no syrinx at this point so no surgery. He vomits frequently- if he gets very upset, if he bumps his head hard, if he gags on food. Then he's fine, it's like hitting a reset button. He's having a sleep study done tonight. He's been waking so much at night and I've seen some breathing pauses. They will likely do the surgery if he has central apnea. Symptoms do seem to be increasing so it just may be time. He hasn't been tested for EDS or anything like that. He does have extremely soft skin though. As for his herniation, it's 7 mm and his flow is mildly blocked. Hopefully it won't be time for surgery but I suspect it will. The inversion table treatment sounds amazing, I'm glad it helped for her!
Thanks for the encouragement. I really hope he calms down. He's had 2 heart surgeries and will need more.
Yes many have moved to facebook.