10 year old boy diagnosed with GBS

We were in your situation a lifetime ago,9 years ago. initial dx was gbs later rediagnosed to cidp with continued treatment. Not saying your dx will change, just be vigilant and watch for a back slide. After the first dose of ivig he went from not being able to walk and all organs affected etc. to running down the halls by the 3rd day of a 5 day load. Upon release the doctor warned us that we might be back, sure enough by 8 weeks he was fatigued started tripping and by post 12 weeks ivig he was back to not being able to walk. Once cidp was confirmed a regular schedule of treatments was followed for 9 years with several tries of weaning off only to relapse. Being young is on his side, puberty plays an important role in getting better. Did you ever hear people say don’t worry, you’ll outgrow the allergies well what actually happens is the immune system resets itself during puberty and starts fresh. Some articles suggest a reset happens every 7 years. Either way, puberty was pivotal for us. we originally had treatments every 2 weeks and now are at a 40gram dose every 8 weeks. We are testing the waters to see if this is over. so you know, he is now in top physical form competes in MMA tournaments that’s cage fighting and brazillian jujitsu, you get the point you have to be strong. Works out every day and runs miles. Hopefully the dx for you is gbs and pt will get your son back to himself, if not cidp is not the end of the world and will in fact help your child to become a humble, kind, compassionate young man even more than he was before after he makes it through this battle. If you want to talk leave me your email and I can send you my phone number. Keep hope and be strong for all of your family.

Hey Ghavinsmom, I was in a similar spot about 15 years ago. I was a very active 13 year old and I was rushed to the hospital on my first day of 7th grade and diagnosed with GBS. This would have been my first opportunity to play organized sports other than little league (football practice was after school the first day), so I was crushed when I realized I wasn’t able to play. The paralysis in my legs got pretty bad at times, going up above my hips for a short time before reverting back and recovering. I was in the hospital for a little less than a month and bedridden for most of the time. Since I was young, I bounced back very quickly. I remember specifically that I was released from the hospital on 9/9/1999. I did physical therapy a few times a week for some time after that until I regained my strength back. Thankfully, I recovered in time to play basketball that year, which I believe started some time in November. I was a little weak at first, mainly just from being off of my feet for so long, but as the season went on I progressed and never looked back. I’ve never had any lingering or ongoing issues and I went on to enjoy a completely normal and active junior high and high school experience. Throughout high school I played 4 sports and was even the captain of my football and basketball teams my senior year. Shortly after college I took up running to remain active, and to date I’ve completed 7 marathons and have more on the calendar!

I hope this helps. Don’t hesitate to reach out to me if there is anyway I can help. I know it’s tough to stay positive during the tough times.