[nschneider350]

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.

[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.

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

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

[nschneider350]

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.

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.

[AnnieB3]

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! 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

[AnnieB3]

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

[nschneider350]

Originally Posted by AnnieB3

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. 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! 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

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.

[teresakoch]

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.

[AnnieB3]

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

[suev]

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

[nschneider350]

Originally Posted by AnnieB3

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 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!