CDKL5 Deficiency Disorder: what can you say about the treatment plan?

HI @Courtney_J

Treatments, so many doctors and specialists, teams of people seeing my daughter. We are in all the therapies: physical, speech and vision therapy. Progress is slow but you can see the incremental improvements. The keto diet has helped a bit for the seizures. I can't say that it was a 100% solution, we still take tablets, but they seem to be shorter and a bit less frequent. For those who wonder if the diet is helpful, I would say yes, but then again, the hard part with health is that everyone is different. I think it's always worth a try.

Hi-

We actually ended up switching doctors because we wanted to try cannabis. Not all doctors are okay with this new style of treatment. I think it's worth asking inquiring about. Our daughter is taking cannabis derived oils and it seems to help. I don't like to push things, not everything works for everyone, we sure found that out, but after discussing the possibilities, we decided to give it a try and it seems to be helping. Just thought I would bring it up incase some people we interested.

AJF