Your Replies

  • August 22, 2018 at 8:27 am

    Hello, Please register with the GBS|CIDP Foundation and a liaison will be assigned to you and he or she is usually a recovered patient and will be happy to talk with your father. Here is the direct link to register. https://forum.gbs-cidp.org/register/
    I am a recovered patient and a volunteer with the GBS|CIDP Foundation and I will be happy to chat with your dad.

    August 22, 2018 at 8:23 am

    The GBS|CIDP Foundation has a doctor to doctor consult program where your doctor can have a phone consult with the member of the Global Medical Advisory Board. If you would like to arrange this, please let me know. I am a volunteer liaison with the GBS|CIDP Foundation. or you can call the foundation office at 610-667-0131.

    August 22, 2018 at 8:12 am

    I am so sorry that your baby has gone through this awful time with GBS. You must be terrified. I had GBS 45 years ago and I had a trach for 7 weeks and after trying to remove the tube it was discovered that I had scar tissue and damaged rings. I am not sure where your sons blockage is either above the tube or below, but I do not understand why you have to wait so long for a fix. I do not know where you are located but I received the best care by Dr Marc Rosen at Jefferson otolaryngology in Philly. There is a lot of good done by lasers in this area. Its is a surgical procedure but it works. I am available for any question by email or by phone. I am a volunteer of the GBS|CIDP Foundation.

    February 6, 2017 at 9:20 am

    Hi Mary. Please lookup Centers of Excellence on the GBS-CIDP Foundation website and see if one is near you. They should have pediatric experts in gbs. Also, it is said that if ivig does not work it is possible that it is not gbs. Try another round and if it still does not work, seek another opinion.