Hope for my Dad

    • Anonymous
      February 19, 2011 at 10:48 am

      First of all thank you to all the brave folks who post on this board, we have been printing out many of the posts and showing them to my Dad. He landed in the hospital Nov 29 with tonsillitis and soon after had trouble breathing and had to have a breathing tube put down his throat. While in the hospital they finally diagnosed him with CIDP (after two months of extensive tests prior).

      He is now at a rehab center within a hospital and is on a vent. They are trying to wean him off the vent, and he’s been off it 4-5 hours at a time each day. He didn’t pass his swallow test. He is able to sit up supporting himself. He is receiving IV/IG every two weeks. The Dr.’s are quite good there but neither his Dr. or neurologist have ever seen a case of CIDP and the neurologist is conferring with another neurologist who does have experience with it.

      The hospital social worker is talking about moving him to a nursing home which we’re concerned about because we think he needs a lot of PT and good quality care.

      I was just wondering if anyone has been in similar circumstances and was able to recover, or has any words of wisdom for him. Thanks in advance, my thoughts are with all of you struggling with this disease.

    • Anonymous
      February 19, 2011 at 12:10 pm

      I’m no doctor, but are you sure your dad doesn’t have GBS? I would especially question the CIDP diagnosis given the inexperience of your dad’s physicians. The diseases can share similar characteristics, but it my understanding the onset of GBS in general is more acute and can be fatal, while the onset of CIDP is usually more insidious and rarely is fatal. It is also possible that initially your dad was suffering with GBS, which has now morphed into CIDP. I do know of a number of individuals with either GBS or CIDP who have been in similar situations to your dad who have made significant recoveries. CIDP is so subjective in its presentation and prognosis that it’s hard to predict your dad’s course with any probability, let alone certainty, but good recoveries are certainly possible. Best of luck to you, your dad, and your family.

    • Anonymous
      February 19, 2011 at 12:17 pm

      Hi Goodney, I forgot to mention my Dad had symptoms starting last May that got slowly and progressively worse. He started to have weakness in his legs and arms and hands, and was having trouble opening jars. Then eventually he started falling down quite a bit. He also has prostate cancer (which is under control with hormone therapy) and was on blood pressure medication so it took a really long time to figure out what was going on.

    • Anonymous
      February 20, 2011 at 2:44 am

      I don’t want to contribute to any anxiety you may be feeling, but I think the DX, as Goodney writes, is in question here. I have CIDP but was DX wrong twice before it was found that my CIDP was the result of Monoclonal Gammopathy and I was started on Plasma Transfers, which have worked well for me. It’s likely that I’m around your Dads age, so we have a lot in common. Yes, I agree that a nursing home is not a good idea. Let’s face it they don’t represent in any way the quality care he can receive in a hospital. I too had and still have a swollowing problem, but the Plasma Transfers have improved ability to swollow a great deal, and with some restriction, I can eat many things I couldn’t eat before treatment. It may simply be that he let the symptoms mount up and so it’s going to take a bit longer for him to improve more substantially. What I know of this disease is that it affects everyone differently, so he has to stay as positive as he can and you must be the best advocate he has. Don’t let them push around. If they try to send him to a nursing home seek legal help. Also talk to doctor about possibility of Plasma Transfers instead of IVIG. You need a neurologist that really knows his stuff and takes an interest in your dads case. In closing let me add that I’ve known of many people as sick as your dad is with CIPD that have made a good recovery. It takes time.

      Good Luck, all the best

    • Anonymous
      February 20, 2011 at 8:54 am

      Thanks Gabriel100. Are you talking about Plasmapheresis? We asked the neurologist to talk to the specialist about that.

      I called Norman Latov’s office at Cornell but he doesn’t see hospitalized patients nor does his colleague. I was going to call the expert at Cornell next. Maybe I can ask his neurologist to confer with Dr. Latov? Dad is hospitalized in NJ.

      My mom is seeing an elder care lawyer next week.