Living with Guillain-Barre Syndrome

My son developed gbs in August of 06. He was about to be 10 years old at the time. It started with him saying the back of his knees and lower back hurt. (He never complains even when he is sick) My first thought was that he might have a spinal injury, so I asked him if he had jumped or fallen and he said no. I made a Dr. appt for the next day. He told the Dr. that only the back of his knees still hurt. She examined him and said he did have an ear infection and sent us home with an antibiotic.

He started throwing up that night and kept saying something was stuck in his chest. I knew something wasn’t right but when I searched the internet for throwing up + pain behind knees I found nothing. The next day he continued to throw up and I was concerned that he would get dehydrated. I called the Dr. they called in a Phenegran supository and the throwing up stopped. That night he had severe sleep apnea and by the next morning could hardly use his right leg. I took him to the emergency room and by that afternoon he couldn’t walk.

The Dr. transported him to Texas Children’s Hospital where they did several tests including a spinal tap. They said he had GBS and needed IVIG treatments. He was amazing, determined and so brave. He began using a walker in a few days. It was affecting his hands and he developed facial drop but he kept fighting. Thank God he never had to be put on a tube or respirator. I remember being overjoyed when he was making progress and told the Dr. that it was so great that the treatment was working and he said it is not the treatment working yet it’s him. I am still to this day so amazed at my son’s determined spirit. We were able to leave after 5 days and he had a little over a month of rehab. We know we were so blessed compared to so many stories we have heard. We are also amazed that so many people have it when the stats say it is so rare. We were just told that the brother of a child who was on my son’s hockey team has it. I have heard of at least 5 other people that have had it.

One that was sent home from the hospital a couple of times before they tried to help her. This is such a strange illness. We still don’t know what triggered it other than I had a surgery a month before and maybe the stress of that caused it for my son. I guess will never know. God be with all of you that are struggling with this and I pray loving and caring people are in your life or brought to you.