Patients CDKL5 syndrome
CDKL5 Deficiency Disorder: what can you say about the treatment plan?
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How have you been?
Welcome to the forum "Living with CDKL5 Deficiency Disorder" here on Carenity! In this group you can share your stories and your advice, but also your questions and fears with other members!
What care plan has been established for your family member/friend diagnosed with CDD? Have you noticed any improvements thanks to this treatment plan?
Feel free to share your story and talk to other patients and carers in the comments below!
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.
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.
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