My dad was diagnosed 2 weeks ago, he is currently in the icu on a ventalator, he hasn't been able to wake up since they put the trach in and took him off sedation medications ( 4 days ago), is it normal to not be able to even open your eyes? He seems to be in a coma, if he opens his eyes it may only be once a day for 2 seconds, but it is getting worse on a daily basis, does anyone know if this is normal of this syndrome, we know he has a severe case of it. I haven't been able to find research on it, thanks
Hi Calaan,
I know it's really scary, but think this could be "normal" for intense GBS cases. My son had a really bad case last year, and while he was on the vent and a feeding tube, they had to give him medications just to regulate his heart beat. It would go really fast and set off all the alarms, then it would drastically drop setting off alarms. Absolutely nothing in his body was working the way it should because the nervous system controls EVERYTHING! Anyway, I recall there were several days during this really bad stretch where he seemed to be in a coma and not responding to us at all. We just kept talking to him, and as the gamma globulin started to reverse the paralysis, he gradually became more responsive. He has made pretty much a complete recovery, and now I sometimes wish for just a little spell of silence! I hope the same proves true for you and your dad. Hang in there.
Hi Calaan,
YES! I have GBS, not as bad as your dad. So sorry to hear about him, but he can still make a full recovery ive heard (from everyone who has been paralized, unable to talk, open their eyes, etc,…). For me, my hearing is even effected and my tongue is numb, head/face/lips/gums/throat got numb along with most muscles everywhere in my body, and I have excruciating pain still after 3 1/2 months… Please advocate that he always is kept pain free… I cant emphasize that enough, because this is a torturous illness when every nerves myelin sheath is being attacked by his own body causing demyelination. I didnt sleep more than 2 hours each night for 7 weeks if that, because my Dr was a horrible diagnostician. I work in an ICU for kids, and the nurses and Drs all know that when a patient is paralized they are under obligation not only by hospital policy, but also by law, to make sure patients are pain free. Its inhumane to let someone who is still alert (like I would bet on it, your dad is) to let them lay there suffering unable to speak and on top of it hear everything said and not be able to open his eyes!. To get what Im saying, PLEASE.go to YouTube and watch the 10 to 15 minute video a family put together when this young lady who had just had a baby got Guillain-Barre -“From GBS to Happily Ever After” & see for yourself how she was barely able to mouth the word, “pain”. Then imagine if it had spread just a bit more to her eye nerves, and then she couldnt open her eyes. So u can understand how important it is to always, always have someone at your dads side in the hospital room so they can SPEAK for him and SEE for him whats going on when HE isnt able. No one will EVER stick up for him like family who love him will. (= I see parents speak up for our hospitalized kids daily. They catch staff making mistakes all the time. Nurses and Drs are only people too… definitely NOT perfect. I hope this helps, but doesnt scare you. Good luck with your Dad.!!
Kathy
Your dad's experience with Guillain-Barre sounds VERY similar to my mother's case. Within 1 week of diagnosis she seemed to be in a coma-like state in ICU. She was completely unaware of the surgery to insert the trach, her plasmapheresis procedure and most everything that happened during that period of time. I can tell you that the most frustrating thing for me was that no one could predict how long she would remain in each phase of the disease. Each case is different they would say and I realize now that is very true. In my mother's case, this phase lasted about 3 weeks. During this time, she also had severe edema - swelling throughout her body - she looked like she weighed twice her petite 110 lbs. How old is your Dad and does he have any other health problems? My mother was 76 at the time of diagnosis and after 7 months hospitalization and 1 month rehabilitation facility, she made a full recovery and was able to live independently in her own home again. I hope the same will be true for your Dad.
Hi Calaan,
This sounds a lot like my case too. When I first got sick I was on a ventilator just 6 days after my first symptoms. I remember my mom saying it seemed like I was in a coma. It is scary, but maybe it is helpful to know that my mind was calm and completely at peace. I hope the same for your dad. Make sure and I am wondering if this is already happening, Is your dad receiving treatment? He should be getting plasmapheresis immediately. I wish you well and please keep us posted.
Lisa
Hi Calaan
I was completely paralyzed head to toe, including my eyes and eyelids, and on a trach and feeding tube. Everyone, my husband included, thought I was in a coma. But inside that locked-in body I was often fully awake and aware. I just couldn’t let anybody know. I was very lucky though and that stage only lasted a couple of weeks. Everyone’s case is different and there is no way to know how long it might last for your dad.
One thing to know is that pain management is so very important. I was in excruciating pain and couldn’t let anyone know. Luckily one of my nurses knew and worked very very hard to keep my pain managed. Sadly, most of the other nurses didn’t understand and thought that because my blood pressure kept crashing that they should limit my pain meds. They didn’t understand that my autonomic system had also been affected. Please make sure you are advocating constantly for your dad to make sure his pain is managed. He may also be very sensitive to heat. I was and still am. In order to sleep I have to have a fan blowing directly on me. I remember that once I could let people know I was hot and they started the fan along with cool wash clothes on my forehead it was heaven!
Your dear dad is in there and is possibly a lot more aware than it looks like. Do all you can to let him know he is not alone and his pain is managed. I hope he starts to recover soon.
Best wishes to you
Elaine
Hi Calaan, I'll add my voice as one who also was in a coma-like state. (Although I don't think mine lasted as long as some of the others.) It was a weird experience to be mentally conscious, and yet unable to make any connection to the "outside" world. I was acutely aware that the only things functioning in my body were my heart and brain. To be honest, I was expecting to die at any time, because I knew I couldn't go down any farther, and stay alive. But after a while (not sure how long), I started to "pull back" from the edge (how it seemed at the time), and eventually could blink and do small movements. (If your dad's eyes are closed that's good. Mine were partially open, and they had to keep putting eye drops in.)
I hope your dad starts to improve soon! Best wishes to you!
my dad is 60 and was running 3-6 miles per day and has never had any other health problems.
elyssabeth said:
Your dad's experience with Guillain-Barre sounds VERY similar to my mother's case. Within 1 week of diagnosis she seemed to be in a coma-like state in ICU. She was completely unaware of the surgery to insert the trach, her plasmapheresis procedure and most everything that happened during that period of time. I can tell you that the most frustrating thing for me was that no one could predict how long she would remain in each phase of the disease. Each case is different they would say and I realize now that is very true. In my mother's case, this phase lasted about 3 weeks. During this time, she also had severe edema - swelling throughout her body - she looked like she weighed twice her petite 110 lbs. How old is your Dad and does he have any other health problems? My mother was 76 at the time of diagnosis and after 7 months hospitalization and 1 month rehabilitation facility, she made a full recovery and was able to live independently in her own home again. I hope the same will be true for your Dad.
The only treatment he has had is the imnumoglobulin. should they be giving him something else?
Lisa Topaz said:
Hi Calaan,
This sounds a lot like my case too. When I first got sick I was on a ventilator just 6 days after my first symptoms. I remember my mom saying it seemed like I was in a coma. It is scary, but maybe it is helpful to know that my mind was calm and completely at peace. I hope the same for your dad. Make sure and I am wondering if this is already happening, Is your dad receiving treatment? He should be getting plasmapheresis immediately. I wish you well and please keep us posted.
Lisa
Thank you all for your helpful information! I truly feel you guys are like angels sent from Heaven!! We have been so worried and he seemed to be getting worse every day, we even thought that maybe he was in a vegetative state, but hearing from you all gives up hope that this is normal ( for him), Today we also started to get pain medication for him, they have given him nothing since the trach, because they wanted him to "wake up" and were afraid the pain medication would make him even more groggy. We honestly didn't know he was was suffering, but now knowing he was, we can totally see the signs, ( everytime they did physical therapy with him his blood pressure would sky rocket to 160/95, He usually runs around 105/65) I don't know how we missed it before, I feel I was definently guided to this site so he could get the help that he needed, thank you again with all my heart!!
Elaine said:
Hi Calaan
I was completely paralyzed head to toe, including my eyes and eyelids, and on a trach and feeding tube. Everyone, my husband included, thought I was in a coma. But inside that locked-in body I was often fully awake and aware. I just couldn't let anybody know. I was very lucky though and that stage only lasted a couple of weeks. Everyone's case is different and there is no way to know how long it might last for your dad.
One thing to know is that pain management is so very important. I was in excruciating pain and couldn't let anyone know. Luckily one of my nurses knew and worked very very hard to keep my pain managed. Sadly, most of the other nurses didn't understand and thought that because my blood pressure kept crashing that they should limit my pain meds. They didn't understand that my autonomic system had also been affected. Please make sure you are advocating constantly for your dad to make sure his pain is managed. He may also be very sensitive to heat. I was and still am. In order to sleep I have to have a fan blowing directly on me. I remember that once I could let people know I was hot and they started the fan along with cool wash clothes on my forehead it was heaven!
Your dear dad is in there and is possibly a lot more aware than it looks like. Do all you can to let him know he is not alone and his pain is managed. I hope he starts to recover soon.
Best wishes to you
Elainethank you!! he has been really sweaty, today we put cold wash clothes on his head and brought in a squirt bottle to spray his legs and arms, he is sweating bullets! We are getting him pain meds now too. :) It is so reassuring to me to know he's still in there! I wish I would have found this site earlier!
Hi Calaan,
I am so glad this has been helpful to you! I wish I had found this place when my kid was sick! You asked earlier about the type of treatment . . . if your dad is already getting the gammaglobublin, I do not think they will do the plasmapharesis. my son started with the gammaglob. and then someone I really trust told me that the plasmapharesis was better, so I tried to get them to change course and they would not do it. The doctors said the gammaglob. was already starting to help him (and it was), but if they switched to plasmapharesis (which would be like washing his blood) it would strip out all the gammglob that was starting to help him. I am not aware of any options except these two.
The doctors did agree if the demylenation process did not completely stop soon, they would switch, but he continued to improve with the gamma, so we stuck with that.
Once Andrew was no longer in that coma like state, he became incredibly sensitive to light, noise, touch. We actually were not allowed to touch him for a while because it would make his blood pressure skyrocket.
Hang in there!
laan said:
Elaine said:Hi Calaan
I was completely paralyzed head to toe, including my eyes and eyelids, and on a trach and feeding tube. Everyone, my husband included, thought I was in a coma. But inside that locked-in body I was often fully awake and aware. I just couldn't let anybody know. I was very lucky though and that stage only lasted a couple of weeks. Everyone's case is different and there is no way to know how long it might last for your dad.
One thing to know is that pain management is so very important. I was in excruciating pain and couldn't let anyone know. Luckily one of my nurses knew and worked very very hard to keep my pain managed. Sadly, most of the other nurses didn't understand and thought that because my blood pressure kept crashing that they should limit my pain meds. They didn't understand that my autonomic system had also been affected. Please make sure you are advocating constantly for your dad to make sure his pain is managed. He may also be very sensitive to heat. I was and still am. In order to sleep I have to have a fan blowing directly on me. I remember that once I could let people know I was hot and they started the fan along with cool wash clothes on my forehead it was heaven!
Your dear dad is in there and is possibly a lot more aware than it looks like. Do all you can to let him know he is not alone and his pain is managed. I hope he starts to recover soon.
Best wishes to you
Elainethank you!! he has been really sweaty, today we put cold wash clothes on his head and brought in a squirt bottle to spray his legs and arms, he is sweating bullets! We are getting him pain meds now too. :) It is so reassuring to me to know he's still in there! I wish I would have found this site earlier!
Mamabear is right about the treatment options. They're pretty limited, and neither one is geared towards making it better, just trying to stop it from getting worse. Once the body starts down the regeneration path all you can do is wait. And it's a long, slow, often painful process. But hang in there, patience is everything in this fight.
Yes, plasmapheresis. It is true that once the patient plateaus then they will improve from there and won't get worse. In my case and what I've heard to be the norm is they usually start immunoglobulin first -this is typically reserved for less severe cases. Plasmapheresis for severe cases. However, if there is no signs of improvement with the immunoglobulin (I had it every other day for 10 days and no improvement so they switched). Then three days into plasmapheresis treatment I plateaued finally and improved from then on. They continued with that for whatever the duration is. I personally think you should be asking about it and then if it's true he's not making good progress (good progress means his paralysis is starting to reverse itself, he would be moving tiny bits here and there), then you should demand after this period of time that they now try plasmapheresis. Please let us know what you decide and what happens, my family is praying for you. Also, my pain was not managed either and drs, nurses don't realize that your brain is firing signals like crazy trying to communicate with your body. It's like phantom limb pain phenomenon (look it up) Excrutiating. I can't believe he didn't have anything at first, but now that's corrected. Also, physical therapy is too much to handle it cause so much pain I know it's needed but hopefully it's only the basis stuff. Always medicate before and after PT. Again, excrutiating. The best thing for me too was a nurse had me immediately fitted with special "boots" to wear that would prevent "foot drop" which happens after having paralyzed legs. (Look that up too). My case was so severe, but that is what made it so I could walk again. Your dad will recover. And he's in there. Talk to him, read to him. Don't over stimulate but let him know you know he's still with you. I'm really touched by your story and hope to hear good news from you soon.
Lisa.
calaan said:
The only treatment he has had is the imnumoglobulin. should they be giving him something else?
Lisa Topaz said:Hi Calaan,
This sounds a lot like my case too. When I first got sick I was on a ventilator just 6 days after my first symptoms. I remember my mom saying it seemed like I was in a coma. It is scary, but maybe it is helpful to know that my mind was calm and completely at peace. I hope the same for your dad. Make sure and I am wondering if this is already happening, Is your dad receiving treatment? He should be getting plasmapheresis immediately. I wish you well and please keep us posted.
Lisa
I had GB about 30years ago…I was super hot and sweaty also.I had a nurse mist me w water a nd clipa fan to my bed.I was in the hospital for 2-months.paralyzed from the neck down.another girl i met was in the same hospital in icu for a long long time.she got really bad.they had to tape her eyelids shut at night because she couldn’t even close her eyes.she was inthe hospital for 9 months.your dad is SERIOUSLY in there!!!iI also wanted to say, the Dr s never believed how much poison i was in so they would nt give me much pain meds…iI still have burning and tingling but at least in walking…I pray your dad gets on the mending side soon…it’s such a confusing time.
My daughter was diagnosed 38 days ago ,she was put on a ventilator 36 hours after the diagnosis,a truly dreadful experience ,she had imnogluben for 5 days and 1 week later 4 days of blood plasma transfer , since then it has been small daily improvements,currently she has movement in both arms ,was taken off the ventilator one week ago, and is under going daily physio ,still along way to go but she is very determined,and is at last able to talk.keep optimistic!
He is getting plasma pheresis now, he has had 2 treatments now, He is getting pain meds now too at our insistance :), no improvement yet on any movement or opening his eyes, thanks for the prayers
Lisa Topaz said:
Yes, plasmapheresis. It is true that once the patient plateaus then they will improve from there and won't get worse. In my case and what I've heard to be the norm is they usually start immunoglobulin first -this is typically reserved for less severe cases. Plasmapheresis for severe cases. However, if there is no signs of improvement with the immunoglobulin (I had it every other day for 10 days and no improvement so they switched). Then three days into plasmapheresis treatment I plateaued finally and improved from then on. They continued with that for whatever the duration is. I personally think you should be asking about it and then if it's true he's not making good progress (good progress means his paralysis is starting to reverse itself, he would be moving tiny bits here and there), then you should demand after this period of time that they now try plasmapheresis. Please let us know what you decide and what happens, my family is praying for you. Also, my pain was not managed either and drs, nurses don't realize that your brain is firing signals like crazy trying to communicate with your body. It's like phantom limb pain phenomenon (look it up) Excrutiating. I can't believe he didn't have anything at first, but now that's corrected. Also, physical therapy is too much to handle it cause so much pain I know it's needed but hopefully it's only the basis stuff. Always medicate before and after PT. Again, excrutiating. The best thing for me too was a nurse had me immediately fitted with special "boots" to wear that would prevent "foot drop" which happens after having paralyzed legs. (Look that up too). My case was so severe, but that is what made it so I could walk again. Your dad will recover. And he's in there. Talk to him, read to him. Don't over stimulate but let him know you know he's still with you. I'm really touched by your story and hope to hear good news from you soon.
Lisa.
calaan said:The only treatment he has had is the imnumoglobulin. should they be giving him something else?
Lisa Topaz said:Hi Calaan,
This sounds a lot like my case too. When I first got sick I was on a ventilator just 6 days after my first symptoms. I remember my mom saying it seemed like I was in a coma. It is scary, but maybe it is helpful to know that my mind was calm and completely at peace. I hope the same for your dad. Make sure and I am wondering if this is already happening, Is your dad receiving treatment? He should be getting plasmapheresis immediately. I wish you well and please keep us posted.
Lisa
I'm
I think you'll see some difference with this treatment. Thanks for keeping us posted. Nice job advocating for his pain meds. Lisa.
calaan said:
He is getting plasma pheresis now, he has had 2 treatments now, He is getting pain meds now too at our insistance :), no improvement yet on any movement or opening his eyes, thanks for the prayers
Lisa Topaz said:Yes, plasmapheresis. It is true that once the patient plateaus then they will improve from there and won't get worse. In my case and what I've heard to be the norm is they usually start immunoglobulin first -this is typically reserved for less severe cases. Plasmapheresis for severe cases. However, if there is no signs of improvement with the immunoglobulin (I had it every other day for 10 days and no improvement so they switched). Then three days into plasmapheresis treatment I plateaued finally and improved from then on. They continued with that for whatever the duration is. I personally think you should be asking about it and then if it's true he's not making good progress (good progress means his paralysis is starting to reverse itself, he would be moving tiny bits here and there), then you should demand after this period of time that they now try plasmapheresis. Please let us know what you decide and what happens, my family is praying for you. Also, my pain was not managed either and drs, nurses don't realize that your brain is firing signals like crazy trying to communicate with your body. It's like phantom limb pain phenomenon (look it up) Excrutiating. I can't believe he didn't have anything at first, but now that's corrected. Also, physical therapy is too much to handle it cause so much pain I know it's needed but hopefully it's only the basis stuff. Always medicate before and after PT. Again, excrutiating. The best thing for me too was a nurse had me immediately fitted with special "boots" to wear that would prevent "foot drop" which happens after having paralyzed legs. (Look that up too). My case was so severe, but that is what made it so I could walk again. Your dad will recover. And he's in there. Talk to him, read to him. Don't over stimulate but let him know you know he's still with you. I'm really touched by your story and hope to hear good news from you soon.
Lisa.
calaan said:The only treatment he has had is the imnumoglobulin. should they be giving him something else?
Lisa Topaz said:Hi Calaan,
This sounds a lot like my case too. When I first got sick I was on a ventilator just 6 days after my first symptoms. I remember my mom saying it seemed like I was in a coma. It is scary, but maybe it is helpful to know that my mind was calm and completely at peace. I hope the same for your dad. Make sure and I am wondering if this is already happening, Is your dad receiving treatment? He should be getting plasmapheresis immediately. I wish you well and please keep us posted.
Lisa
Hi Calaan,
I hope your dad is doing better. He is so lucky to have your support! When my speech was affected, I lost my credibility. I was accused of faking it. It was one of the lowest points in my life to think they were turning their backs on me and not offering me treatment. Although I had a mild case, I suffered a great deal pain. I even ended up with a spinal tap migraine on top of it all. A compassionate nurse saw through my disability and believed me. I'm forever grateful to her and my family for sticking by me. I have finally found other supportive medical staff thank goodness. Hope he will be better soon!
Well, I can tell you right now my mom is going thru this. It all started with her in late August. She is still on a ventilator. There were days where she would be very responsive, as far as opening her eyes and but never able to move anything was neck down. I don't want to be negative just share my experience. I have learned that GBS is VERY unpredictable. Just a couple weeks ago after my mom was released from ICU and transferred to a rehab facility (but still on vent) she went into cardiac arrest. They were able to bring her back (THANK GOD, of course) and back to ICU she goes. She definitely took 10 steps backwards. But now just after 2 weeks of dying and coming back to us she is finally for the first time moving one leg and both arms. Not very well but she is. I have heard of others not being able to move anything from head down including their eyes. What they say and I' m still reminding myself this constantly all day long is patience, patience and more patience. He WILL one day open those eyes for a bit longer and the next day longer than that. Please trust me when I say it takes time. A whole lot of it. Just in a few short months we have gone thru so much with my mom that it just doesn't seem real. I tried to research everywhere to find if anyone had gone into cardiac arrest after being removed from ICU. Nothing!! When they say it is different with everyone, boy it is true. As hard as it is try and stay positive and keep telling your dad to fight. That's what I have told my mom from day one and I continue to do so. Hang in there and know that we as family need to stay positive for them. When they make small improvements we need to say "AWESOME", keep it up. To them it is nothing and slow. But we need to keep them patient. Good luck!!