I just wanted to say thanks to Teresa and Sue for your thoughts and prayers.

NO!!!!! Absolutely DO NOT have him go on Ketek. Reread what I wrote. It is 100% contraindicated in MG!!!!!

You guys are going to have to make the decision on the trach. Intubation and a trach are both an assault on those muscles and are risks for infections. Sort of damned if you do, damned if you don't situation. Ask your Dad what he wants!

Not only that, but Ketek is very toxic, in general is not recommended anymore for most patients. (MG aside) It is supposed to be reserved for last ditch efforts. It is very toxic to the liver and has caused death in some people.

Yes I reread and you said never . So should he just stay on the Zoysn as this point or should he be getting something else?

My mom was going to ask him today if he wanted to go ahead with the Trach so we will see.

I'm not a doctor. You have to trust that your Dad's doctors know what they are doing. I think the antibiotic they gave him was good, not knowing anything about your Dad! I simply thought you should ask them about continuing an antibiotic, since he is immunosuppressed and some patients need to be on them longer to fully get rid of the infection. But, again, he might be at higher risk then of getting clostridium difficile!

Keep asking questions. I think the most important medicine is being there for your Dad, which you obviously are. Love doesn't heal all but it's the one thing that sick people really need that doctors can't give them.

Annie

In re-reading your original post, it is entirely possible that the CIDP is what is causing his current problems; the MG is just a complicating condition. The doctors are probably treating the CIDP, but the fact that he has MG is going to make the treatment a little more complicated.

A couple of links that might help (print out copies and have them attached to his hospital chart for reference):
Drugs to AVOID with MG:
http://www.myasthenia.org/hp_edmater...nce.cfm#table1
A more expanded version:
http://www.myasthenia.org/docs/MGFA_...tionsandMG.pdf

Drugs that may aggravate MG:
http://www.mgauk.org/main/mgdrugs1.htm

There is also a PDF that you can download that talks about medical considerations for people with MG that is written for medical professionals: http://www.myasthenia.org/docs/MGFA_...onalManual.pdf
You may want to print out a few relevant pages for your dad's doctors/nurses, or you can refer them to the website.

Has he ever been tested for Celiac Disease? It is another auto-immune disease which is MUCH more common than most doctors realize. A lifelong gluten-free diet is the current "cure" for CD, and many people with MG find that their symptoms are helped by a GF diet as well. Some of the symptoms that are seen in CIPD may be caused by untreated Celiac Disease as well. Celiac Disease causes the intestinal tract to smooth out, which causes malabsorption of nutrients, which then leads to malnutrition and vitamin/mineral deficiencies, which many doctors believe MIGHT be underlying causes for many AI diseases.

Here's a link to more information about CD and GF stuff:
http://neurotalk.psychcentral.com/post8767-2.html
If he's been on a feeding tube, he has probably been GF for a few weeks, and that might skew the results of a blood test, but it can't hurt to ask to have it done!

Most doctors don't deal with that many MG patients, so they may not be "up" on all of the stuff that they need to take into account. A good doctor will appreciate you giving him/her as much information as possible (a "bad" one won't appreciate it, but give it to him/her anyway....).

I hope this helps. Be sure and get enough rest - you need to take care of yourself through all of this, too!

One more thing (as if I haven't said enough already!) - it sounds like a lot of things "cascaded" with your dad. With CIPD, it appears that sudden pain in the back isn't all that uncommon. Since he has both CIPD and MG, he is much weaker than most patients usually are. Chances are that lying in bed for a while with a hurt back and weakened muscles brought on the pneumonia (he wouldn't have felt like coughing up any mucus that accumulated, which would have likely caused it to get infected).

Once he developed full-blown pneumonia, his muscles were weakened even more (and I'm sure that his back hurt more, too!), which meant that he couldn't get rid of the infected mucus, due to his inability to cough. My bet is that while he is weak as a kitten right now, if he is able to stay on strong antibiotics and he keeps taking his meds he will get better with time, lots of rest, and plenty of TLC. Just be sure that the head of his bed is elevated enough that the mucus doesn't have a chance to sit there and cause more problems.

In addition to a PT, do they have a respiratory therapist monitoring him? He will probably not be able to do as much as the RT would like, but they can keep tabs on him to see if he is getting better or to let the doctor know if there is cause for concern.

Are the doctors continuing him on medication for the MG? It's possible that they may be so concerned with treating his other symptoms that they forgot to include the MG meds as part of his regimen.

If he doesn't have one already, you might want to ask the doctor about the possibility of getting him an adjustable bed - like a hospital bed - to sleep in at home. That way, he can sleep slightly elevated if he needs to in the future. Most insurance will cover the cost of a bed if it is determined to be medically necessary.

Thanks for all of this, I will print it out now and take it with me tonight. I will keep you all updated and thanks again for all of this great information!

I know he has a couple of bulging discs and some semi-bad arthritis in his back which I am sure are not help matters.

I believe he has a RT monitoring him. I know they adjust how much the machine is helping him breathe during the day and then they kick it up at night to give him some rest. I also think they kicked up the sedative drip to allow him to sleep more during the night.

They are still giving him The Pred and Cellcept for the MG. I am not aware if there are anymore he is taking for the MG. I know there are others thing he can take as options but I don't know if they have been tried.

In the future once he does come home I think we could get him a hospital bed. Right now in the ICU the bed does go up and down but they won't let it go below 30% dude to the Vent at this point.

I believe there plan is to keep him on the Vent for the weekend and then do the Trach on Monday once he gets more strength back. I will find out more tonight.

Thanks again!

If you're going to be sitting with your dad for awhile, there is a great book on Celiac Disease that can give you a LOT of information - you might check with the hospital to see if they have it in their library; if not, check with your local library, or purchase a copy (you can order it on Amazon). It is Celiac Disease: A Hidden Epidemic by Dr. Peter H.R. Green, M.D. It is well-written, and easy for us non-doctors to understand (I still refer to my copy, 2 years later!). A newly revised version was released earlier this year, if you decide to order it. Dr. Green is one of the leading Celiac Disease researchers in the USA.

Incidentally, Celiac Disease is genetically-linked, so if one person in a family tests positive for it, everyone else is at a higher risk of developing it (or at the very least, to have issues with gluten). It is recommended that all family members be tested if one member is diagnosed with it. It is currently estimated that 1-in-133 people have it, but only 3% of them currently know that they have it. That means that 3 million people in the US have CD, yet 2.9 million of them DON'T KNOW THAT THEY HAVE IT.

Most doctors were taught to look for certain markers for CD, and they were taught that it was a relatively rare disease. As more information has become available, however, CD researchers rapidly realized that the condition is much more common than originally believed. More doctors are becoming aware of the "other" symptoms to look for, but it is taking time to get the message out to all of them.

Here's another article that might help - it has some good information in it on the background of gluten sensitivity (it's from a holistic "source"; I'm not a big fan of holistic stuff, but the research appears to be sound):
http://www.baumancollege.org/pdfs/ar...ensitivity.pdf

I don't mean to bog you down with a lot of reading material, but I remember what it is like to sit in a hospital room feeling helpless while someone you love is being treated. It always helped to feel like I was doing SOMETHING that might help in some small way.....

Hugs to you and your family!