New to group seek support for 6 year old son

Hello! It has been years since I have been in an CMT support group or even entered it in an internet browser. I have CMTX. Very mild, diagnosed at 17, type tested late 29. My 6 year old son is quite a mess right now though. He has a rare form of epilepsy which all began last year. Now it is obvious he has motility/balance/motor issues, not related to the epilepsy. They have become MUCH worse with the onset of the epilepsy. I have not had his blood testing yet. Presumed to have CMT also now. What is new I need to know about??? He already does OT for his epilepsy issues, we are adding on PT very soon. He cannot stand still, runs into walls, trips, tremor (which may be to meds also). Concern is the rapid progression and severity seems not typical of his age and has been rapid. Really kicked in as abnormal brain activity did. Already checked medication data base, his anti-seizure med is not a Neurotoxin. Really hoping for uplifting news.......I scanned somewhere that there is treatment on the horizon and even a cure??? We already are having a time with the rare epilepsy, the CMT on top is very discouraging. He is already receiving fantastic services at school. What do I need to be aware of? Staring over from scratch.

hi LAF11,

I hope you are well today. It's good to have a clear diagnosis about your son to be given the right treatment.. Stay strong..

Sorry you are going through such a difficult time worrying for your son. The research does look promising for a treatment within the foreseeable future. Here's a link to more info on some of the ongoing research: