Reply To: 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.