AnonymousMay 15, 2008 at 11:55 am
I am new to this forum but not to GBS. Fourteen years after my father had GBS, my 18 year old son was diagnosed with it in January 2008. My son began having extreme discomfort, tingling and pain in his hands and feet and became too weak to stand up. His symptoms started very rapidly. We were seen in our local ED in Goldsboro, NC and admitted. In less that 12 hours, he had to be intubated and was transferred by helicopter to Duke Hospital. I guess our experiences with my Dad equipted us with enough insight to detect this early. My son was treated with plasma phoresis five times and, after a week off, began five IVIG treatments. He had to have a tracheostomy and a Gtube and had lots of issues with pneumonia. During those initial weeks, he was paralyzed from the shoulders down. He remained in the PICU from 01-14-2008 until 2-20-2008 when he was transferred to a pediatric rehab. Since that point, he has regained his movement in his arms and legs and has been able to have the trach and G tube removed. He was discharged to come home on 05-02-2008 and he is walking with a cane! We are amazed by the progress he has made and touched by the caring professionals who have gotten us to this point. This has not been an easy journey. There has been ALOT of pain- and there still is though it’s to a lesser degree. There have been times when we have been frustrated, discouraged, tired, you name it but we do feel that faith and prayer are essential to the progress our son has made and will continue to help us as he works to get his strength back.
May 15, 2008 at 12:08 pm
Glad your son is traveling the journey back. My 11 y/o has cidp, so I can understand your frustrations and fear. We were not as serious as you guys as we were only in picu for 10 days with leg paralysis and bowel/bladder issues. IVIG was our Godsend. Currently we too are recovering and get treatments monthly. We will pray that your son continues his progress and I wish you courage! Best wishes!
Dawn Kevies mom
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