CIDP related swallowing problems – any treatment?

    • Anonymous
      June 25, 2012 at 3:15 pm

      Hello,

      My mom has CIDP. She has suffered a severe crisis about a year ago, when she was completely paralyzed and intubated.
      Since then, through combined treatment of IVIG, cyclophosphamide, steroids and physical therapy she has seen great improvements in all systems except for her swallowing system. She is still being fed through a tube (peg).
      Is anyone familiar with such a condition, and if so – do you know what treatments are available, and where?

      Thank you

    • Dawn Kevies mom
      June 26, 2012 at 1:15 pm

      We have no experience with the swallowing issue, as our swallowing returned after our first loading dose. From your description of her progress and the regimen she is on for treatment and PT, it sounds like your doc is knowledgeable and doing everything possible. Your mother’s progress sounds great. The swallowing should come back eventually, healing typically starts at the feet and works it’s way up, a mm a day, provided there are no set backs. Is she in a nursing home? Do they do speech therapy for her? Have additional swallow tests been done to see if her abilities have changed and maybe she can accept puree? Keep strong, keep us posted.

    • Anonymous
      June 26, 2012 at 4:32 pm

      Thanks Dawnת The progress is nothing short of miraculous, and we are tremendously grateful for that.
      She has been home, breathing on her own, walking, writing and using her hands freely for over 6 months now, but the swallowing problems seem to leave her doctors still a little blundered.
      Dozens of swallowing tests were done, including video fluoroscopy. The doctors think some of the nerves leading to the muscles around the Esophagus may have been damaged, but we have not yet received a clear answer on the functionality damaged and the severity.
      She has started working with a speech therapists on practicing eating again (there weren’t any speech issues), with several teaspoons of puree a day, but it is very hard for her and makes her cough quite badly.
      If anyone knows of additional treatment methods we would be very interested to hear about their experience.