Living with Guillain-Barre Syndrome

January 2007 was the beginning of a year of fear for me. My 4 yr old got a gastro flu and went from walking one day to not being able to stand on her legs the next. We took her to the doctor and he admitted her to the hospital for 24 hrs. She was so weak she could not stand and when she did she would scream and cry and to this day those memories haunt me.

Well 24 hours turned into three weeks. The first few days no one seemed concerned that she could not walk. Guess they figured she was dehydrated and weak from the flu. I kept asking and showing them how her legs were like jello when I stood her up and how she just couldn’t stand on her own. They would place her back in bed and tell me maybe tomorrow. Every day was the same finally a nurse came in to weigh her and she knew a week had past and this wasn’t right.

She called in a head nurse and a Pediatrician came in and examined her. She was very weak. could not lift her legs or even touch her nose with her fingers. Her movements were jerky and shaky and it scared me so badly. That evening she was given a spinal tap and although it came back negative she was still diagnosed with GBS

She had pain so bad in her fingers that I could not put a long sleeve shirt on her. She would scream when the material touched her hands. Scream when I stood her for a minute to use the bathroom. She was in so much pain and my heart was breaking.

She never stopped smiling and laughing. She would wake up at night screaming and soak and wet from sweating and the pain in her legs wouldn’t allow her much sleep.

I stayed by her side night and day. I cried when she wasn’t watching. It was so hard seeing her this way. A child who loved to run and play and dance and there she lie unable to do anything. I had no idea what GBS was and no one was telling me anything.

My daughter had a good attitude and she never let not being able to walk get her down. She had a positive out look and her big smile was amazing.

She has been in therapy for 10 mths now. She took her first steps 4 mths after she got sick. Started walking a little the end of April and in September she walked in to school something I never thought she would do. She was not walking perfect and her legs still pained and got tired and she slapped her feet as she was too weak to lift them but she was not giving up.

Now the slapping of her feet has stopped and her legs only get tired if she over does it. She still has a weakness in her hands and her fingers pain. I can’t seem get the teachers to understand that even though she looks healthy she is still recovering. She can not do buttons or zippers the strength is not there but she doesn’t give up and she pushes herself to the limit always.

I look at her and I am so amazed that someone so small has been through so much and come so far. I pray every day that she is one of the lucky ones that fully recovers from this. I have a hard time talking about it without ending up in tears. There is so much more but this is some of her story.