Hello! I created this board in the hopes that there may be others out there that have children - or have themselves - been diagnosed with XP22.31 deletion syndrome. My son, who is 2.5 years old, was diagnosed with the deletion when he was about a month old. Despite seeing genetics at multiple hospitals - as well as being followed by many other doctors - there is not much known about his condition at all. Now that he's getting older, his delays are much more obvious and I want to help him as much as possible. He is currently seen by five specialists in early intervention a week, and is working still on walking, talking and eating solid foods. He has had four surgeries - one for pyloric stenosis (4 months) and three for undescended testicles, and has been diagnosed with nystagmus, FPIES and X-linked icthyosis. He also has sensory issues.
If you're out there, I'd love to compare notes on experiences, other symptoms and things that have helped!