Guillain-Barre Syndrome

[Davina]

My 12 year old nephew began having symptoms of GBS about 4 weeks ago, and has been hospitalized for the last week and a half, since he has been diagnosed. My sister took him to the doctor several times and it took them a while and his symptoms had to reach a certain point before they could diagnose him. Now he has spent 6 days in pediatrics ICU and is intubated. He wakes up and communicated using an alphabet board and some sign language that him and his mom made up together. So far they have done the immuno globin treatments, which didn't seem to help much. Now they are talking about using a blood filtering machine to cleanse his blood from the toxins. Does anyone have any experience they can share with children with GBS or with the blood filtering machine? The docs told my sister that the blood filtering machine carries a 20% risk of death. What other treatments have people found to be helpful in the recovery of GBS? I would love to connect with other parents for continued support, if you have the time. Thank you

[shorty2552]

Those are the only two treatments for GBS i am sorry to say! The 20% risk is due to infections. Think about it; you are taking the child's blood out of their bodies, running it through a machine and putting it back in! The best advise i can give is if anyone is feeling the little bit sick, keep them away for him! His immune system is going to be very weak and you don't want that child to be facing anything else! GBS is hard enough to face on its own!