Reply To: 4 year old with CIDP – New to Forum seeking support

Good Morning,
Since the monthly infusions started he has been doing good. No ups and downs just getting stronger. He isn’t have issues with pain and all of a sudden his blood pressure has been right where it needs to be. We ever got to cut his medicine down. The imuran scares me so I have been cutting down on that as well until I can get into the new dr, the Dr we have now thinks it is fine but won’t answer my question about the long term affects. I worry about him now but also later if it causes more damage. I am on the cancellation list but I am just greatful it is only a month away. I love seeing him getting stronger but I do fear if he gets anything. We are very careful to keep him away from other kids and sick people.

I have never even heard of Potts, Guess I will look into it.

Thanks for all your support,
Shannon