4 yr old Child w/ CIDP

April 5, 2010 at 11:36 am

I am new to this forum. My 4yr son was diagnosed with CIDP. It all started in July 09. First we thought it was GBS, then a relapse 7 weeks later in September, next another over Thanksgiving. Each time 7 weeks apart, each time treated with IVIg which has helped and he was reclassified as CIDP.
We have done monthly treatments Jan/Feb/March which have really helped. However, we are skipping this April because the doctor wants to see what would happen so we are nervous about a relapse in May (which would be about 7 weeks from his last treatment). My son hates it, of course at 3-4 years of age he doesnt understand it and I’m really hoping to connect with some of you with younger children to understand things you have done. We are considering a mediport because my son hates the IV in his arm and often it is hard to find a vein or the veins collapse over his two day treatment. I’d like to hear about that from other moms. Really this has been such a hard year for us and I’m hoping I could connect with others who can help. We live in Hoboken, NJ. We are going to Hackensack Medical for treatments but have also seen a doctor at CHOPS. Thanks in advance for your guidance and thoughts!