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

June 27, 2012 at 10:53 pm

About the blood pressure, have they looked into POTTS syndrome? Is there any way to get him off the imuran? Steroids are awful as well, but maybe one pulse dose could kick things into action along with the ivig if ivig alone does not do the trick. Every month may also need to be looked at as well, if he is having trouble with the imuron and ivig (ended up in hospital again) it might even need to be closer for a while. Also, some people on imuron get sepsis, maybe the doc will reconsider since he already had the staff infection. Keep us posted, things do get better. We were where you are almost five years ago unable to walk, eat everything and now he is like a regular kid, even stronger than his peers. Don’t give up on what your gut tells you. We will say a prayer for you guys.