10 year old boy diagnosed with GBS

    • January 22, 2015 at 12:24 pm

      My 10 year old son was diagnosed with GBS two weeks ago. He has had his 5 day treatment of the IV IG. I am trying to stay positive but it is so difficult seeing him like this. Falling and needing help getting in the car, his spirit is good but I am so sad for him. He is an athletic child…very active. I was wondering if anyone could share about their recovery time with their child. I have been told that children recover 100%. He is now in PT 5 days a week and is back in school with help getting from class to class. I was just wondering when some of you saw improvement…I just need some hope right now. Trying to stay positive but it is difficult.

    • January 23, 2015 at 4:23 pm

      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.

    • January 30, 2015 at 1:01 pm

      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.

    • February 4, 2015 at 11:44 am

      1617novakn THANK YOU SO MUCH! Your post was God sent! I needed to see your post to help me through the tough times. I have read it maybe thirty times over and over, you give me hope and you give my heart a break. I am so happy that you have such an amazing testimony! Thank you so much for brightening up my days and helping me with my faith. You are amazing and good luck on your future marathons! May God continue to bless you!

    • February 4, 2015 at 11:49 am

      Dawn I thank you as well for your detailed journey! You also have helped to restore my faith….it hurts seeing our children like this. Unfortunately the future is not predictable with this thing! I have to be strong like you…take the lumps and the bumps, the disappointments and the emotional roller coaster rides. I thank you a million times for your support, I am sure I will be calling on you at some point for some support. Yes I keep reading that because he is young, he will bounce back….I am hopeful and holding my faith.