Hi folks,
Just thought I’d take some time to update you on our little guy, Ryan.
After a few days of test, lots of blood work, a spinal tap and other procedures a 9 year old boy doesn’t need to know about, we finally have a pretty good idea of just what is going on.
It appears that he has developed a syndrome called Axonal Guillain-Barre syndrome (GBS). Basically, a viral infection clicked some sort of switch with Ryan’s immune system that makes his immune system attack his nervous system. It starts from the feet and works towards the neck, and also progresses from outside to inside. The part of most concern is when it reaches the chest, as that can affect the respiratory system. Ryan did have some issues with breathing yesterday but the nurses here at Mary Bridge Children’s hospital watched over him like a hawk.
We believe we have passed the damage stage of the illness and we are seeing some improvement in Ryan in certain areas. Ryan had issues walking beginning Sunday, and by Monday he was walking like a 95 year old man. He hasn’t been on his feet since Monday at about noon due to the paralysis, and his voice changed a bit as the process of his illness reached his chest.
He can’t hold a book or play his DS just yet, but some of the paralysis has diminished and he is moving his arms and legs much more than he had been doing so in the past few days. He lacks fine motor skills, but his voice is improving. It appears that the primary treatment, an intravenous infusion of Immune Globulin (IGIV), is taking hold.
GBS is something that Ryan will recover from, most likely fully, but it may take anywhere from 2-3 weeks to as long as a few months. Unfortunately nobody knows how long the recovery will be, as it varies from person to person. Ryan may need some time in a wheel chair, walker, crutches, as well as going through a bit of physical therapy.
We haven’t heard him laugh for a number of days, and smiles have been fleeting (a square of chocolate spurred the last one
), which is something we miss from our active little guy. Anyway, below are some links that you might find helpful to explain what he is experiencing.
kid version adult version IGIV /IVIG We’ll let you know how things are going from time to time, and if you have any questions, please ask.
Thanks for all of your support, calls, and e-mails. The folks here at Mary Bridge are great and there are many folks here with kids much sicker than ours, so don't forget them in your thoughts as well. That really put in in pespective for us, as some of the families have been here for a few months. Hug your kids.
Andy & Dawn
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