I am so sorry to hear about your son. We live in Ohio and I was wondering where you are located. My 2 year old daughter was just diagnosed with CIDP and we recently switched doctors. We now see Dr. Jerry Mendell. He practices both at Nationwide Childrens and at OSU medical center. Google his name as he has a lot of experience with CIDP. There is also a doctor in Michigan, Dr. Richard Lewis, depending on where you are in Ohio. I have heard nothing but good things about Dr. Lewis. He didn’t want to see my daughter due to her age. I am not a doctor, but I recently read a story very similar to your son’s as it was in our local newspaper. It was a young lady who started having problems when she was in high school and is now in her thirties and just got a diagnosis. She has lymes disease. She was checked for it once and it came back that she didn’t have it and now after all these years she was checked again and guess what. Please keep us posted.