Mom has GBS since last month-have questions

    • Anonymous
      June 3, 2006 at 7:28 pm

      Hi all!

      My mother (70 years old) was diagnosed with GBS last month. We are approaching 1 month in ICU. She has been thru IVBG(?) and her last plasma treatment is Sunday.

      I have tons of questions but the one that’s bothering me the most is the movements she is doing now. She is totally paralyzed but her head will shake back and forth very quickly aand she moves her chest up and down in like a spasm. The doctors can’t explain it and if I can understand my mother (we have tolded her to stick out her trongue if the answer is yes) the movements are involuntary. Is this possible and has anyone experienced this?

      Any answers would be appreciated. Also does age play any factor in this??



    • Anonymous
      June 3, 2006 at 8:07 pm

      Hi Mindy,

      GBS affects the nerves, and the body’s organs have nerves too. If she hasn’t been able to move her head at all, I’d be inclined to assume that these were signs that she was starting to improve. Mind you, I’m not a doctor, and I’ve never heard of these exact symptoms before, but it makes sense that it would be the nerves “waking up.” With GBS, the paralysis begins in the feet, fingers and mouth and spreads up the body. As the patient gets better, the paralysis moves back down in the opposite direction. Therefore, it would make sense that these were signs that she was improving, because it’s affecting the areas where she would see improvement first. Has your mother been trached? If so, have they talked about when they might ween her off? A month can feel like such a long time when your loved one is in ICU. I know because my fiance was there for three weeks, ventilated and in a medically-induced coma, unable to communicate for days at a time. However, since we both know sign language, it was easier for us during the times he was awake.

      I’ll be sending well-wishes your mother’s way. Hang in there. I hope she gets better really soon!


    • Anonymous
      June 3, 2006 at 11:55 pm

      Hi Mindy,

      You mentioned 2 treatments, which means the first one didn’t stop progression, so PP is being done. Right now, a lot of things can induce those kind of movements. A bit more info on her condition would help, like the time line, and if trached, pain meds and so on. If breathing shut down, and they intubated her, but have yet to transfer over to a trach, then she could be fighting the discomfort of tubes down the nose and throat, and feeding tubes too, causing spasms and head shaking. Sometimes the docs wait a few weeks but most are done around the start of the second week. Going in and out of mental fogs and such, and having been there, done that, I gaurentee you she is trying to move anything with everything she’s got. All that’s moving is her chest area and head, and she has no control over muscles yet. Kinda makes it look like spasms. Hard to say. It’s too early, still being in the treatment phase, for her body to know where it should be and what it needs to do. It’s as confused as she is. Hang in there and fill us in on more details. I hope there’s a turn around soon.

    • Anonymous
      June 4, 2006 at 9:11 am

      hi mindy,

      ivig’s 1/2 life is 3 1/2 weeks. pp is not usually given until then [thee pp washes out the ivig] unless there is serious continuing downgrading indicating that the ivig did not work. if the ivig is working & then the pp doesn’t work you are in worse shape. each has a 70% chance of stopping gbs advance. ivig is working if, after getting it, the spread of gbs stops. recovery happens at a later date which varies person to person. age seems to be a factor. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 4, 2006 at 9:33 am

      The doctors started the PP about 1/2 weeks after the IVG as no real improvement was seen. Yes she is trached. They intibated her after 2 days in the hospital and did the trach about a week ago. The feeding tube was removed from her nose and now is directly in her stomach and that was done 2 days ago. They are wanting to ween her off the trach and transfer her to an acute hospital to get her out of the hospitals ICU. I was upset about that until I heard that it was actually [B]in[/B] the sister hospital a little south of the hospital she’s at now (which is actually closer to my house, but a little farther for my dad).

      If the treatments don’t make any improvement what can I expect at the worst, time wise I mean? It’s been real difficult as alot of our family is back in Chicago and its just me and my dad and he’s 72 but still works (but has taken time off now). My sister is coming in on Wed her second trip here and is going to stay as long as she can to help Dad & I out, I’m exhausted as I have done nothing but go to work and the go and releave my dad in the evening just to keep her company.

      I did notice on this web site that there is going to be the 9th annual International Symposium in Novemeber right here in Phoenix. Will that be helpful for us or is that for doctors?

      You guys are great! Any discussion or words of advise are helping!

      Valley of the Sun!!

      P.S. Is there anyone else out there from Phoenix or Scottsdale?

    • Anonymous
      June 4, 2006 at 1:33 pm

      Dear Mindy:

      GBS attacks every single nerve in the peripheral nervous system at the same time. I always thought of GBS as something similar to pouring a can of pop into your computer. The electrical problems and short circuits can cause all kinds of weird problems. Likewise, GBS can cause all kinds of odd muscle spasms, strange sensations, and weird symptoms.

      IVIG or plasma pherises doesn’t actually make your nerves any better. Only time and the body’s natural healing will repair the nerves. All IVIG and PP can do is stop the attack on the nerves by the immune system. If your mother is not getting worse, then the IVIG or PP did its job.

      I hope you and your mother are being taken care of.


    • Anonymous
      June 4, 2006 at 4:06 pm

      I agree with everyone’s posts. Please make sure you Mother gets plenty of rest. Some of the odd movement you might be seeing as she starts to come back out of being paralized is the muscles are not very very weak and she will have not strenght in her muscles. The head being so heavy and the neck muscles weakend it is hard to hold the held up straight let alone hold it still. As she starts to move and reach you will also see jerking and shaking until those muscles build up strenght again.

      Take care of yourself and remind your Dad to take a day off here and there and you should do the same once your Sister is in the area. Taking care of the care givers is so important! Too many visitors at one time is too exhausting to the GBS patient.

      Keep in touch with us and ask those other questions, we are up to it!

    • Anonymous
      June 4, 2006 at 8:11 pm

      Hi all,

      Today was a good day. She did not ask for any pain meds even when asked. She was much calmer, her blood pressure & heart rate was good and she did not even send off the alarms on the resporator! She really seemed calm! We did suugest to both her neurologist and internest that she was started on anti-depresents. I’ve been on them myself for the past 4 years for anxeity disorder and they have worked like a charm. My mother behore this was a very anxious person with phobias. When I left she actually kissed me good-by! This was a first!!!

      Has anyone had an experience with a acute care hospital. We visited the one they were suggesting and my only conern is the only way for a patient to ask for help is using a call button which mu mother would have no way of doing at this time. The plus side of this place is they are located in the sister hospital of the one she is at now. They do offer 24 hour respritory care and rehab, both physical and occupational on site. Comments please!

      Desert Rat:cool:

    • Anonymous
      June 4, 2006 at 8:42 pm

      They have several types of call buttons. Some that are right on the controler for the tv and some that are operated by a patients mouth. One like i used after I was able to move a tiny bit was the soft touch button and they can put it next to your hand or hip or tape it to your shoulder so you can just lay your head against it or tape it to your pillow or to your night gown. Just talk to them about your concerns and they can work something out. Placing her in a room near the Nurses station might be an option if she can make a noise with her tongue like a click. That takes strong muscles that she may not have yet. The get pretty inventive. I had a few days that I moved my foot and the bed pan fell. Staff is inventive!

    • Anonymous
      June 6, 2006 at 6:09 am

      HI Mindy,
      My brother Frank seems like he’s in the same stages as your Mother. He was diagnosed the end of April. He is completely paralyzed/been on a vent/feeding tube for about 2 weeks (just last week they put in the treach. and moved feeding tube to his stomach. IVIG didn’t seem to work, so they did the P.P. – he’s not getting any worse, so perhaps that means it worked…
      The Doctors have also told us there isn’t much more they can do for him and will move him soon to an Acute Care Facility. We asked for a “nurse button” that is more like a pad, he has it near his head, so all he has to do is turn his head and the light goes on at the Nurses Station. I’m hoping he can have the same thing at the Acute Care Place. Now that the Treach. is in place, he can mouth words to us, so easier to communicate. 2 days ago he asked me to lift up his arm and when I did, he moved his whole arm back and forth. We we so elated, finally some movement…….
      My family is exhausted too. I know exactly what you and your dad is going thru – I have a family and work also…the hospital is 1/2 hr. from my home. The visit alone is very emotionally exhausting for me… I’m so worried, I can’t sleep at night very well…..getting burned out quickly but trying to pace myself. My brother gets upset when we miss a visit or not there, we’re all trying to be there as much as possible – it’s tough. He has also asked for a Pysch. Consult and they were going to put him of some medication to help with the depression. Frank just turned 43 years old on Saturday. The hospital was very accomodating, let us have a small party for him at the hospital and we tried to make the best of it!!! Frank also has pneumonia and has been running high fevers……the pneumonia has been present for about 2 weeks now and not getting any better…although not any worse, so we’ll take that for now…..
      My thoughts and prayers are with you and your family.

    • Anonymous
      June 6, 2006 at 11:40 pm

      dear friends,
      my father is 78 years old,
      he found himself with numbness over limbs, on 3 Dec.,2005.
      within 3 days, he become paralyse.
      he needed intubation, all the muscle could not move, even his eyes could not open. we could not found any signs of life on him.
      he received a five days course of IVIG, and 5 shifts of plasma exchange.
      the doctors said that , the prognosis was very poor. he was not much responed to the treatment.
      after a week we found that he can move his feet very gently.
      the inprovement is very very slow.
      it was a competition of “recovery and complications”.
      he got heavy chest infection and diarrhoea, over the first two months.
      the main point recovery of such patient is “care”
      I am so much thanks for the nurses and health caretakers.
      do some excersis to her when you visit, her.
      you can ask the nurses or physiotherpist to teach you.

    • Anonymous
      June 8, 2006 at 7:52 pm

      Hi Lotaitai,

      I hope your father continues to show improvement.