• Anonymous
      June 27, 2012 at 1:29 am

      My mom was diagnosed 1yr ago with C.I.D.P., in the part of the state of Michigan we are in this is a very uncommon disease. Well, my mom has not got a lot of money and has to be on medicaid to be in the hospital. They stuck her in the old community hospital and give her no physical therapy what so ever and handle her like she is a toy. I have gone as far as putting signs up about her CIDP, including the booklet I got from this foundation to help explain to the nurses, docs and nurses aides as to what the issue is and why she feels like she is so much pain. Needless to say, they pay no attention this, I have sent letters to the hospital itself asking for them to explain to the staff what the heck is going on, this has come to nothing. They let her sit, then once a year they say if she can get up and do a bunch of exercises medicaid will pay for more, how do they expect to do this? I have tried working with her with range of motion exercises but i can only help to a point. Its very hard to stay positive when it seems everyone here is just out to say no, I have been told time and time again that they have no time to help her.. They just let her sit and I am just frustrated because I don’t know what to do. *sigh* I needed some venting.. .sorry..

    • GH
      June 27, 2012 at 4:35 pm

      This is, indeed, a frustrating situation to be in. Even in a metropolitan area there are medical service providers of various kinds who do not understand CIDP, and who are not sensitive to the need for careful handling to minimize pain. I don’t know what the answer is, unfortunately. If they are abusing her by causing unnecessary pain in the way they handle her, you need to lean on them any way you can, in my opinion.

      Range of motion therapy is extremely important for those with limited mobility. If her legs and feet are atrophied, it is especially important to prevent permanent foot drop. There are special boots made to help with this, but they require attention because they are not worn continuously.

    • June 27, 2012 at 7:01 pm

      Ruffus, are you saying she is in a nursing home? If so, I might be able to help you as I have been through hell and back twice with my dad. If she is in a nursing home, we need to get in contact somehow because it is to much to write about. I can help you make sure things get done and if they don’t what you can do about it. What town in Michigan? Maybe there is somewhere better you can go depending on where she lives? Maybe you can leave a cell phone number or an email and we can contact each other

    • June 27, 2012 at 7:08 pm

      BTW, there are wrong regarding if she can go from sitting to walking medicare will pay for therapy. In fact she can be sitting and graduate to range of motion exercise, from a sitting position, to balloon toss etc. There just has to show progression. Standing from a sitting position, or even practicing on standing is progress. Progression is the key word, even baby steps. If it is a nursing home, it is in their best financial interest to make the therapy happen, they get extra money. The problem you addressed about the hospital/medicaid is…If she currently is on medicaid but winds up in the hospital for complications be it pneumonia, injury, infection whatever, she has to remain in the hospital for 72 hours before she can qualify for medicare…a higher payment than medicaid. That is what the hospital is looking for. When she returns to her current facility after a 72 hour stay, she would then be a medicare pay for 90 or 120 days entitled to physical therapy provided she makes progress.

    • Anonymous
      June 27, 2012 at 7:20 pm

      The facility she is in is called a rehab/continuing care center, they are not quite a nursing home but also not a real hospital either, our city tends to dump the older patients who can’t afford more care there and it is a joke. Since she has been there she has developed other problems including a fistulla (not sure on spelling) and that is really keeping her in pain. She trys and trys to get up and in her chair but needs pain meds to help be able to do it because of how bad it hurts. The nurses say fine we will give her pain meds and be back when they kick in to help her up into her chair, well, they either come back in 10min. when they haven’t had time to go into effect or they wait 3 to 4 hrs till when they are wearing off and mom doesn’t feel like it because the pain is returning then. I have been doing range of motion with her legs because they won’t do it no matter how much I ask them too, they say they don’t have time and now for the second time they have canceled or pushed back her IVIG treatments which make it even worse.. so frustrating.

    • June 27, 2012 at 7:59 pm

      What part of MI are in you? My dad is the administrator of a nursing home/rehab facility in the Detroit Metro area.

      Dr. Richard Lewis is a good dr to go to for CIDP. In fact, he is the “Lewis” of the Lewis-Sumner variant of CIDP. He is out of Wayne State…here is his contact info: Dr. Richard Lewis Phone: 313-577-1244 Email:


    • Anonymous
      June 27, 2012 at 8:14 pm

      We are in Grand Rapids on the west side of the state. There are no advocates or anything over here, even tho several doctors have continually told me they see CIDP “all the time”, they don’t treat my mom like they have ever dealt with it. Might give Dr. Lewis an email tho maybe he can help some ideas or help send some info to the hospital.

    • June 27, 2012 at 10:44 pm

      Is she medicare or medicaid? I don’t imagine that they will continue ivig on medicaid, especially in a nursing home. Eventually they are probably goping to insist she go into a nursing home. Check the michigan dept of public health to see what violations are connected to the facility she is at or some how we can get in contact and I could search for you. It might be a wise idea to start looking for nursing homes now so that you do not just end up where they place you. Not sure about budget issues in Michigan, but here, you can apply for medicaid (have a social worker at the facility you are at help you get started with that) Make sure your mom signs any papers, so she is responsible for payment. They are tricky in their verbage, if you sign, you could be held liable for payment. Once everything is signed, you should make sure someone has poa for her and that you have her wishes in the form of a living will. Once they start giving heavy narcotics, her signing anything gets a little dicey. So you have to try to get things in order soon. Not to mention the heavy narcotics sometimes contribute to a sundowners effect on seniors. They get confused and disoriented. Phentynol patches work good for pain and for keeping the relief constant. They apply the patch and it gets replaced every three days. You don’t have to worry about oral dosing every four hours. There are different doses, so maybe they could start out smaller. Along with the heavier narcotics will come sleepiness which brings on eating issues and hydration. There are lots of things to consider, but if she is in pain…. I’m just a mom who went through this with both of my parents, so take what I am writing as just an uneducated response to your post.

    • June 27, 2012 at 11:12 pm

      BTW, where is her fistula if you would like to share? Is she catheterized? (bladder fistula) Anyway, depending on where the fistula is, depends on what type of treatment, for some fistulas I know they use immunosuppressants which would be beneficial for the cidp. So if they are fighting you on the ivig for the cidp, maybe you can pursue a route for treatment of the fistula to reduce pain, possible need of future surgery and to stop the abcess from erupting and becoming septic. They would have to at least consider your thought for a suppressant. Not sure what suppressants they use, but prednisone could be an option. They would definitely not be wary because of the price, it is less than pennies on the dollar compared to ivig or remicaid or any other suppressant. I just don’t know if they can use it for all fistulas. If it is in the intestine, I think prednisone is used. Obviously it is not the ideal drug, but it is better than nothing and it has the chance to help both problems. Sorry if I am going on too much. I just know the frustration you are going through at that “rehab facility”

    • GH
      June 27, 2012 at 11:22 pm

      Does this facility have physical therapists? Nurses don’t do physical therapy. If it doesn’t have therapists, I don’t know why it would be called a “rehab” facility.

    • June 27, 2012 at 11:36 pm

      Hi Gh, Rehab, nursing home… it is such a joke. The medicaid/care issue doesn’t help. Ruffus might be referring to a restorative nurse. Once my dad could make no more progress and plateaued, medicare therapy stops and a restorative nurse is assigned and by state standards they just have to do the bare minimum. Literally. In my dads case it was pull him up from his geri chair to a standing position, sit back down and that’s it for the week!!!!. Bill the state of course. It is such a joke.

    • Anonymous
      June 28, 2012 at 4:17 am

      Ok, trying to answer all the questions here, she is on medicaid, there has been no issue of ivig treatment before until now, second time out of the last three there has been issue and they can’t seem to explain what is going on. Now she is going to go about a month without the treatment, she is also on heavy doses of prednisone which has pushed her into a diabetic state also.

      Her fistula is located if i remember correctly between her colon and vaginal area. So when she has a bowl movement it actually pushes some amounts of fecal matter into the wrong area. It is very painful the only option they have given her is a colostomy bag, which she doesn’t want to do unless it is reversible so maybe they can fix the fistula and things can be put back to normal later. However, the surgeon they sent her too, will not do a reversible one and even tho she has asked them to schedule her second opinion they have not done so as of yet. She does not have a catheter but because of the bacteria that gets in the wrong area keeps developing Urinary track infections.

      They do have physical therapy at the facility along with what they call occupational therapy, which is basically cleaning yourself and being able to do things on your own. The range of motion exercises they tell me the aides are suppose to do with her but they say they don’t do that, physical therapy won’t send up someone to do them with her.

    • June 28, 2012 at 5:08 pm

      Ruffus, my heart is breaking for you I know exactly what you are going through. Whatever you do don’t stop visiting, when they know a family member is involved, they are a little more careful. About the prednisone, being that it is causing diabetes (was she diabetic before) maybe you could use that as proof she needs the ivig. If they do do the ivig again, now that she has the diabetes, you have to make sure they use a brand that uses glycine as a stabilizer, not sugars. Gammaguard and gammunex I know are safe. People with diabetes that get ivig with sugars as stabilizers can go into renal failure and end up on dialysis. For the fistula, they can use other immunosuppressants that might also benefit the cidp situation until ivig is approved. The only problem is some of them take 6 months to work???? I know they use remicaid but maybe they use cell cept as well. Some on the site use cell cept for their cidp. I have never seen remicaid used for cidp but it is a imunosupprressant so it is worth a try, at least something until the ivig gets approved. Could they use a phentynol patch for the pain? Keep us posted

    • Anonymous
      July 7, 2012 at 12:51 am

      Another avenue to take are that rehab and nursing facilities like hospitals have licensing and accreditation standards they must meet. Literature that describes the facility to “prospective patients” usually boast who they are accredited or regulated by. Also the Social Services, the people who provide Medicade funding also have a unit called adult protection that oversees care of the publicly funded programs and to protect the interests of patients who are unable to protect their own rights. Adult Services are usually utilized if patient abuse or neglect is suspected. If communication is not working, perhaps reporting might. I always encourage the steps mentioned above be taken before filing a complaint. I am CIDP patient and retired social worker from Washington State. I wish you all the best during painful time.

    • Anonymous
      November 16, 2012 at 2:01 pm

      Things Have just gotten worse, the hospital had an accident with my mom and rolled her out of her bed and on to the floor, now she has these big gashes under her knees and won’t be able to get out of bed for a very long time.. Which means no exercising her legs .. also has her totally depressed.. *sigh*

    • GH
      November 16, 2012 at 4:50 pm

      I think you need to get her to another facility as soon as possible, if you can manage it. It is not acceptable to let a patient fall. I volunteer at a hospital so have some inside information on their standards. There is zero tolerance for falls. It does happen, but it is considered a very serious lapse which should not occur.

      You might also look into whether there is a basis for a complaint against the institution for inadequate standard of care.