Frustration

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.

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
Dawn

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.

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: ralewis@med.wayne.edu

Kelly

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.

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”

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.

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.

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

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.

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.