8 yo with GBS and wondering if CIDP

    • Dgeballe
      September 1, 2025 at 9:26 am

      Hi all,

      This is my first time posting and I was hoping the community could help with something I’m struggling with.  I have an 8yo son who was diagnosed with GBS exactly 2 years ago.  His symptoms slowly improved but have seemed to plateau.  He has not had a major slide back to the initial severity but it seems like he has stopped improving and it’s been a while now without recovery.  Can anyone explain or link to a resource that can help me figure out when a GBS diagnosis switches to a CIDP diagnosis and if there is anything that changes in terms of treatment?  He has had two IVIG treatments (once when initially sick and then once about 6 months later)…he made progress after both but the doctor won’t give him more.  Just feeling a bit lost atm and would appreciate any ideas.  Thanks and much love to you all and your loved ones going through this.

      Dan

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    • JD
      December 1, 2025 at 5:23 pm

      HI Dan. First sorry about the spam up above.  The forum is in dire need of repair.

      GBS is a temporary illness whereas CIDP is a long term illness.  There are many variables so please keep up with your neuro doctor.  If you are not satisfied I would get a 2nd opinion at least.  Keep on them so to help ensure the current problems do not manifest into big problems.  I am sorry for your son’s illness.  If you are in the Los Angeles area I would check an see if you can get in to Cedar Sinai as they are a one of the best for GBS & CIDP.  Wishing you the best, John

      • Dgeballe
        December 3, 2025 at 10:57 am

        Thanks so much, John.  Really appreciate the info!  We will reach out to their center of excellence and see if we can get an appointment.

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