Originally Posted by AnnieB3

Hi and welcome. I am so sorry your Dad is going through such a difficult time. I know how hard it is to have a sick father.

Does your Dad have an MG expert caring for him? It sounds like they are doing everything they can for his MG, though maybe not approaching the infection in the right way. I can only guess, since I'm not a doctor and don't know your Dad's entire condition.

An infection, especially aspiration pneumonia, is difficult to get rid of in MG. And it's especially hard while someone is on Pred. You can't always "see" evidence of an infection when you are immunosuppressed. Sometimes they have to do other tests like a ESR (erythrocyte sedimentation rate) or CRP (c-reactive protein), though those may be elevated due to his CIDP.

Can you say what food source he is receiving? Does he have a G-tube? Often what they give through a tube into the stomach is dairy-based. Dairy can cause an inflammatory response. Are they doing anything for inflammation in general, besides the Pred?

I would ask, if you don't know already, what other drugs he is receiving. I would almost bet he is getting Ativan. Any sedating drugs and a whole host of other drugs are relatively contraindicated in MG, especially when someone is in such bad shape. If you don't know all he is receiving, ask them. Always look to drugs as a cause.

Since he can't have anything orally, he can't have things like acidophilus to keep the good bacteria in the body. Ask them if they have an alternative to that.

Ask them if they have checked his B12. People with CIDP may benefit from a daily dose of that.

I realize that they want your Dad's muscles not to atrophy, which I am assuming is why they are doing PT. The problem is that the more he does right now, the worse he could get. Especially transporting him all over the place.

Have they checked your Dad's kidney and liver functions? Do you know what they are? Is his heart okay? Does he have any signs of edema on his body? If you press into a bone like the shin bone for a few seconds and you see a dent, that is edema. I'm wondering if there is some other reason for a buildup of fluids. That's a question you should ask them too. And a thyroid condition can cause fluid problems, have they checked that?

Plasmapheresis and IVIG are what is used in this situation. You may have to give it some time. When MG gets really bad, it can take longer to recover. The doctors may have to think outside the standard box. Instead of waiting to give IVIG in two weeks, they may have to keep giving it to him. A care conference may be in order so you can sit down with his "team" and discuss all of this.

I really don't know what more to add - maybe others here will. I'm truly sorry your Dad is going through such a tough time. It's almost unbearable for a child to watch their parent go through so much. I hope he will get better soon.

Annie

Ask your Dad's doctors about this too.