update on our appointment

July 21, 2009 at 11:03 pm

Well Dr Lewis was wonderful. He spend alot of time with us. He went over everythin in order since October 2008, looked through the records we took with us, did another EMG. He confirmed that Ryan has CIDP. He said on a scale of 1-10 10 being the worst, Ryan is about a 7. But he said he in confident he can help Ryan but it will be a long journey and we need patience. He told us not to do IVIG any longer cuz it isn’t helping Ryan. Instead he wants to do Plasma Pheresis and 80 mg of Prednisone for a few months. If it works good then we will start to wean him off or get him down to a lower dose of prednisone. Not thrilled with teh side effects of the steroids but if it helps RyAN get better and walk then we will do it. since we live so far away he wants to work with our current Neuro and just see us every 3-4 months to start. we are fine with that but boy I do wish we lived closer so we could see him on a regular basis. He did give us his card and told us to email him and keep him updated on Ryan’s progress. He also said if our current neuro didn’t like us seeinghim and didn’t want to work with im then he would help us find a new nuero close by us that would. Cuz Our current neuro is got the God complex (i’m so wonderful I don’t need the patient or other doctors telling me how to deal with my patients) so if he reacts like that to us going to dr lewis then we will go with who ever dr lewis wants us to see. it’s about Ryan and I don’t have time to stroke a doctors ego.
But dr. lewis is very kind and patient and he seems to really care about the patients and their care.
we knew Ryan had hemolytic anemia but our docs told us that CIDP caused it but he said no. He said the hemolytic anemia was what probably caused teh CIDP. we told him that when ryan was little he had a problem with his spleen being enlarged and our pediatrician blowing it off that that was ryan’s norm. he said no that was an early sign that someting was wrong then. so he wants ryan to see a hemotologist before we get started with PE and steriods so they can get a bunch of blood work to try to figure out what is causing the hemolytic anemia.
So we are very pleased with dr. lewis and would tell everyone to see him if they could.