Requesting any Input anyone can give.
 

I am asking for help from any of you as to anything that might be being missed by Doctors.

Here is the situation:

My Dad has had MG for about 8 yrs and also CIDP, he is now 59 yrs old. He has been doing OK for the most part, he has been getting IVIG's for years and I know he takes Prednisone and Cellcept. He also has back problems. He hurt his back and was in bed for a couple of weeks and of course he just got weaker and weaker. Eventually we called the ER to get him and he was taken to the hospital. They gave him an Epidermal in his back which didn't seem to help much. They also decided to give him the Plasmaferesis treatment which he has never gotten before.

While getting the Plasmaferesis and the few days afterwards, he just got more and more weak. After it was done they decided to send him to PT at a different location. He was complaining that something else was going on and was coughing up green mucus. They also said his white blood cell count was high and said it might be an infection. They did a chest X-ray which found nothing so they assumed the Prednisone was the cause. They sent him on his way.

He lasted 1 day at the PT place and ended up in the ER at the PT because he complained on difficulty breathing. They ended up transferring him to the ICU back at the hospital. They said at this point he would not last the night if they didn't put him on a ventilator. Now they said he got an infection (assuming from aspirating something he ate). They gave him antibiotics and his fever has gone away. They also have him on a 5 day IVIG, 24g per day. His last IVIG treatment is today. They said he had Pneumonia but it looked to be clearing up nicely. He breathed with the ventilator for 2 days doing most of the work they said.

They decided to take him off it yesterday and pretty much as soon as they did he had nothing but problems, tons of mucus in his lungs apparently and he doesn't have the strength to cough it up. He eventually had to be put back on the ventilator and that is where we are at now. I don't see why they took out the tube so soon?

Sorry this has been so long, I just feel the doctors could be missing something or not trying different medicine or something. If the Plasmaferesis didn't seem to do anything and the IVIG doesn't seem to be working (might be too soon to tell), then what options are left or is it just a matter of waiting? I know I've read when an MG patient goes in to a crisis that Plasmaferesis is usually what is done, is it worth another try or since he just had it 2 weeks ago, would it be safe to assume it won't help?

Any input anyone could give would be very much appreciated.

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.

http://www.cidpusa.org/subcutaneous%20IVIg.html

http://safetymedicalproducts.com/mai...sion-sets.html

Wow, thank you for such a great post! I know he has had the same Neuro for most, if not all of the time he has had the diseases. He is definitely not a MG expert though I know that.

I know he is on Jevity 1.5 High Calorie protein diet. I don't know if it is a G-Tube but I know it is going through high nose I believe.

As far as inflammation I don't think they are doing anything for that.

I know he has been getting Xanex to keep him calm and also I know he has received some Ativan. It seems like they want to alternate those 2. I know for the pain he is also getting Vicodin but it doesn't seem to be helping the pain in his back.

I know he was taking B12 before being in the hospital but that was 3+ weeks ago and not sure if they are giving him anything nor if that is in the food.

Kidney and Liver, I don't think they did any tests for. I believe his heart is good, his vitals are good. Not sure on the Edema, can check on that.

Thanks again for such a great and informative post, this could give me something to go on.

http://abbottnutrition.com/Products/jevity-1_5-cal

This is awful stuff. ;) I know, he needs something to keep him alive!! But look at the crap in it. It has milk and soy, both of which are inflammatory foods. I wish they would start using rice protein. Maybe they have a mixture like that for people who have celiac disease. I would ask. With all the stuff they put into that formulation, you'd think a little acidophilus would be a no-brainer.

Insist that your Dad get B12 injections. Look into sublingual B12 after he gets better. A body can't heal well without B12. There is 2.2 mcg. of B12 in the Jevity but that is a ridiculously small amount. They have mega sodium in it too. www.iherb.com has a really good sublingual B12 called Jarrow (the brand name). It comes in 5 mg. (5000 mcg.). I take two a day.

Is your Dad a normally anxious person? I doubt it. What they do in hospitals, especially when someone is intubated, is to sedate them so they won't be a problem for THEM! It's so they don't have to be going into the room all the time. It's horrid. They did that to my Dad too. Ativan and Zanax will both make MG worse when someone who has MG is not doing well. And it particularly affects breathing! :Hum: That icon is for the doctors. And then you mix in a pain med which makes it that much worse.

They may also have to do more antibiotics. The problem is that when you are on immunosuppressants and you have too many antibiotics without things like acidophilus, you can get clostridium difficile. It's an opportunistic little bacillus in the GI tract that is a horrid infection. I've had it, not fun. So be on the lookout for - and I know this is gross - yellow puffy or runny stools. But that's life when someone you love is sick and in the hospital.

And if they haven't fully assessed the back pain, make sure they do that after he gets better. It could be from the Pred, which can cause brittle bones. He may need to be on lots of calcium and vitamin D plus some flax or fish oil. Prednisone is an anti-inflammatory but it's also known as an anti-prostaglandin. We need "good" prostaglandins like those found in nuts and oils, especially when someone is on Pred.

I forgot something. In MG, when muscles get weak, they can cramp and spasm pretty badly. It could be that your Dad's back is one big knot that needs working on by PT. They must have PT in a hospital setting!!! ;) Kidding, I know they do. PT is hard to do while someone is intubated but if they do work out those kinks, his back won't get better - if that's what's going on. I actually "look" for those little areas every day and massage them. It works wonders.

I hope they can find a regimen that will work for your Dad. Ask lots of questions and keep asking them. It may tick of a couple of doctors but it will help your Dad, which is all that matters.

Annie

I thought of one more thing. What antibiotic did he get? There are antibiotics that can make MG worse too.

Wow another amazing post!

The Jevity 1.5, I will see if they can get him on something else.

He wasn't normally an anxious person but I think he has been more and more since he got the diseases, and I know much more since he has been in the hospital. My half sister was there last night and is an RN and she gave us a bunch of good info and told them to give him a drip sedative (yes he hasn't been on one which she found amazing as she said they do this all the time to people in her hospital that have a vent). So for the first time in almost 3 weeks he got a good nights sleep. We are going to insist he gets it at night at least to help him rest and heal, that is a good thing right? The Dr. said that it causes more trouble breathing or something but what's the harm at night when the vent is doing all of the work for him anyway?

Also yesterday when I was there he definitely looked better, he had much better movement of his eyes and they were both open equally (his right is usually drooping or has been since all of this anyway). He actually was laughing at some of the stories we were all talking about which was good since we hadn't seen that from him.

I am not sure what Antibiotic he is on, I knew a couple of days ago, I want to say it starts with a Z.. like Zoysn or something.

They definitely need to assess the back after he gets to a good state since I still don't think he will be able to walk until they do.

You mentioned the spasms, which by the way he has been having these weird like shaking episodes where his whole body would shake. He feels as though he will fall off of the hospital bed. It happened once two days ago, but happened multiple times in the past 2 weeks.

Ya its getting very frustrating because I feel like unless we tell them stuff they either won't mention it as an option or just not do it, like the drip sedative which apparently they said the Dr. had ordered before but since he wasn't fighting the vent they didn't give it to him?!?!?!?

They also mentioned maybe doing the Trach surgery on him since it is much more comfortable and he could talk and eat on it after a while and if need be can be hooked up to the Oxygen to breathe. What are your thoughts on that.

Thanks again for all your help, it's amazing I can get more info from a complete stranger then I can from the Drs.

Can't add anything to the conversation - just wanted to let you know that you, your dad, and the rest of your family will be in our family's prayers.:hug:

Well, to be fair, doctors don't have a lot of time to talk about things. ;)

Have they even thought to culture the sputum he is coughing up, to make sure they are targeting the bacteria with the right antibiotic? MRSA is common in hospitals and that antibiotic (yes, that's the correct name) won't cover it. Make absolutely sure he never gets Ketek (telithromycin)!!! Quinolones can be bad too. What he is on is a combo-antibiotic.

They may not have more than Jevity, but I thought it might be worthwhile to find out. Those of use with autoimmune diseases can sometimes be more sensitive to things like inflammatory foods.

It's a double-edged sword, the sedating drugs and getting a good night's sleep versus no drugs, not getting enough sleep which can make MG worse too. Sleep is absolutely necessary for people with MG. Maybe they can give the smallest dose possible. Young people, older people and those of us who have illnesses like MG can be more sensitive to higher doses of meds. Just a thought.

Do the doctors know about those shaking episodes? I would ask them what it could be. Epilepsy? Drug effects? Not enough oxygen? There are so many reasons and I'm not a doctor, so talk to them about that.

I can't say whether trach surgery is a good or bad thing. I can tell you that anyone with MG who has surgery will often get worse. They give more drugs, like morphine, which can make MG so much worse. After I had morphine, I had moderately severe restrictive breathing. I know a trach helped my Dad (who didn't have MG) but it's such an individual thing. There's also an increased risk for ongoing infection with a trach. It requires lots of upkeep, which is one more stressor for the body.

There are a lot of great people here. Keep asking questions. I hope others like Teresa chime in. It's so difficult having a parent in such tough shape. And you want to make the best decisions but, like you said, doctors don't often feel the need to talk to the family about what they are doing. You really have to be an advocate for your Dad, which it sounds like you are, along with your half-sister. Hang in there. I hope you can all work as a team to help your Dad.

Annie

I only wanted to say 'Hi and Welcome' - - and really applaud you for being a medical advocate for your Dad. As difficult (and confusing and stressful) as it is, it can make such a difference in patient outcome.

I hope your Dad feels better soon.
Sue

I believe they did a culture on the stuff he was coughing up, that was the night he was admitted to the ICU. I don't know if that is how they determined to put him on the Zoysn or not. I will see if they can put him on Ketek, then again me saying that to them, they will probably laugh.

I know the sedative drip he is getting now, the white stuff, is a low dosage. It was enough to allow him to sleep throughout the night last night though which is good.

The shaking episodes were mentioned to the Dr. and the nurses which just shrug it off in to the I dunno category from what we have seen.

From what I have read there are positives and negatives to the Trach, but like you said the effect the surgery will have on him is unknown. Although could it be much worse than putting the vent down there once more if when they take it out it he still can't breathe on his own. I know when they put that down they have to sedate him pretty good. They also mentioned that it might not even go down a third time since the swelling in the throat.

Thanks again for all of your input!

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! :hug:

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!

Just a quick update on everything, he has gotten some strength back but not enough to breathe on his own yet. They are talking about putting the Trach in and then some time in the near future have him to go PT. Once he has enough strength to breathe on his own then they can pull it.

I am not sure how much longer the vent can stay in at this point. It's been around 9 days now and they said pretty much no longer than 2 weeks can it be in.

They say you can talk with a Trach, how possible is that and does your voice sound normal?

I believe the difference between a vent tube and a trach tube is that the trach tube is inserted below the vocal cords (it may also be smaller). Since the vent tube goes through the mouth and down the throat, talking isn't possible. With the trach tube, the throat isn't obstructed. I don't know about the voice sounding normal - it is probably a little different, but chances are that it isn't too terribly abnormal!

Here's a link to some more information:
http://www.icu-usa.com/tour/procedures/trach.htm

Whoa, my prayers are with your father, I hope things continue to improve! :hug: