My dad seems to be in a coma

General General GBS Discussion
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mamabear said:

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

Elaine
thank 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................................................plasmapheresis and immunoglobulin i.v.i.g.act the same,you get either or but not both,they are not additive
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tirane56..........plasmapheresis and immunoglobulin work the same,you get one or the other but not together

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This is normal and frankly, a gift to your father. I too had a very severe case of GBS 2005-2006 and was in a coma for nine weeks. The entire time I was experiencing the most vivid hallucinations that seemed continuous. They were strongly influenced by what was around me. My respiration therapist, for example, was my helicopter pilot. My loved ones alternated between 24 hour news and a Sondheim recording on repeat. So many of my hallucinations took place in war zones- all hospitals, and the Sondheim worked it's way into several very odd hallucinations. So by all means talk to your father. Read to him. Sing. Whatever is normal. If there are other people with you have a typical dinner table conversation around him. When he;s alone, leave the room in silence. During my coma We were at the height of the war on terror and Hurricane Katrina wiped out the city of New Orleans. Despite my hallucinations of floods, searching for my lost children and wearing life vests I was still very shocked to learn that New Orleans was gone.

I came out of the coma slowly and even when my eyes opened a bit, I really did not "rise to the surface" for some ytime.

I've spoken with a number of other survivors who describe this very same thing.

I believe that the human body has many defense methods. The pain of GBS is so intense that the body drops you into a coma rather than have you feel it. It's ironic that complete paralyziz took me from the nose down but I could feel everything.

Massage and move his fingers, gently bend them, keep them moving. I've corrected a lot of typos but I was a pianist prior to this disease and where it is fatigue that has forced me to invalidsm, my fingers do not have the control they once did.I hope this helps. Do NOTY worry about the coma. I guarantee you, your father is NOT bored; he can hear you and be with you even though you may be in Marakesh or The Amazon, he knows it's you and because you're his child, you star in most of his hallucinations. There was only one that was terrible; at one point I was being transported via Gondola in Venice (I suspect connected to the KAtrina floods) during the late evening with my wife (who had filed for divorce while I was in a coma, but who knew at that point?) and a beautiful gas lantern handing above while a man named Leporella rowed and hummed.