Special Needs
ncsubride
member
Options
Hello.....
ncsubride
member
Hi my name is Kerri and I have boy/girl twins Benjamin & Katelyn. They are just about 9 months old and last month Ben was diagnosed with Pacygyria. Thankfully we are not experiencing any seizures just motor delays currently. Our neuro said to expect some learning disabilities but we will not know the extent until he is older.
Anyone here dealing with this?
The unknown is probably going to make me crazy.
Sorry I don't know what else to say........
This discussion has been closed.
Re: Hello.....
I am sorry that you are joining us, but welcome!
I do not have any experience with your son's condition, but can relate. DD has c-acc (missing corpus callosum) and we are also in the "wait and see" holding pattern. The effects vary and we just have to see how it manifests itself as she grows. It takes a while, and I still struggle with it, but instead of worrying about the unknown, I try to find and celebrate the day to day successes. Also, allow yourself to get mad, grieve, whatever, so that you get some of the emotions out. It isn't fair that this happens to our kids, but once you can get past some of the negative emotions, it does become less "all consuming."