Welcome to the group.
I am 26 with a facial PWS that expains almost 3/4 of it.
I had a quick question for you have you ever heard of Sturge Weber Syndrome?
I have SWS because of my PWS. My PWS is calcified into my brain and it is internal. I have it in my eyes, ear gums noise, and who knows where else.
Depending of exactly where your PWS there are serveral things that can relate back to SWS. If the PWS is on just your body/arms look into KT syndrome, if it is close to your eyes look into glaucoma, and if it is on your head calsifaction could be involved like it is with me which causes seizures.
For me luckily I grew out of my seizures when I was about 2 years old. I do not have glaucoma because I do not have high pressure, I have the exact oppoisite which having low pressure caused my detached retinas.
Since I do not know the extent of your PWS it is hard to say what problems could be linked with your PWS. But if you have never heard of SWS i would diffently look into it. Having a MRI with and without contrast is the only way to know for sure about and to be diagnose with SWS when it is involved into the brain.
I know several people with just KT and PWS, or just PWS that have other problems. Every case will be different.
As of for the insurance, other then medicaid, I would look online. There are several insurance companies out there just make sure they cover preexisting conditions because that would rule out any treatment PWS related.
I hope this helps,