My son will be turning 2 this month. He was diagnosed last november with a rare mutation in the WWOX gene causing him to have EIEE28, early infantile epileptic encephalopathy. Intractable seizures, chronic lung disease, global developmental delay (no milestones reached), etc.. Along with all of these issues Caleb has severe scoliosis. His curve has progressed from 57 degrees at 7 months old to to 87 degrees now. He is followed by shriners, we tried a soft brace but Caleb sweats profusely, and gets pressure sores and skin break down very easy he could not tolerate it. Casting is an option but pulmonology is completely against the casting. That leaves us with surgery. His doctor is scared Caleb would not make it through spine surgery. We are getting a second and third opinion, but while we wait his progression is ongoing. We are having to decide whether to chance my 2 year olds life with major surgery or let him continue to suffer. Has anyone had to face a similar situation? Any advice?
