June 24, 2017 at 2:01 pm #112893
Hi I’m actually writing on behalf of a friend. This is my first post here and I’m just desperate to support the family in any way possible.
His mother is in the midst of a serious GBS episode – in the ICU on a ventilator for 6 weeks so far and on her second round of IVIG. She is unable to communicate except for mouthing words which is quite a struggle.
He is concerned that she isn’t getting to see anything around her.
He asks- At the moment her eyes are constantly closed but when her eyelids are manually opened she is able to see faces etc. Is there any way to support her having her eyes open for short periods without physically opening them by hand? I would suggest that keeping them forcibly open for any length of time is a bad idea for obvious reasons, but does anyone have any advice?
Also if anyone has any general advice on how he can support her while she is experiencing such a severe and frightening (she may have hospital delirium) episode that would be great. Sorry if episode is the wrong word.June 24, 2017 at 3:02 pm #112894
GBS usually peaks in 4-6 weeks and begins to subside. Abilities begin to come back slowly after the peak and everyone recovers at a different rate. She should be able to open her eyes on her own soon, unless there is more going on than just GBS.
If her face and eyes are affected past the typical peak period, it may suggest Miller-Fisher Syndrome (something I had along with my GBS). I had breathing problems and shortness of breath, but was not on a ventilator. I had the opposite of the eye problem you wrote about, my eyes stayed open and I could not close them all the way for many months. I had to wear blindfolds to sleep for months, then a patch over my right eye (it was the last to return to almost normal).
As far as keeping her eyelids open goes, your friend might want to consider using double eyelid tape for short durations (2 hours) until her eyelid muscles return. Amazon has several types here:
https://www.amazon.com/D-UP-Wonder-Eyelid-Extra-UPD/dp/B000V2F6BU/ref=cm_cr_arp_d_product_top?ie=UTF8June 25, 2017 at 5:31 am #112902
Thanks so much for your reply!
I think he’s really losing hope that she’ll ever leave the ICU – the neurologist has said she’s in the 1% most severe of cases. Your message definitely brought some hope and relief to us all so thank you for that.
If there’s anything else you can think of that could help give comfort to his mum while she’s in the ICU or that I could use to give the family support, please do let me know! Thanks again for replying.June 25, 2017 at 2:55 pm #112903
If IVIg does not seem to be bringing her out of the ICU, your friend should look into Plasma Exchange (PE). PE will filter out the bad anti bodies from her blood, something IVIg won’t do. IVIg stops the immune system from producing more bad antibodies, but doesn’t deal with what’s already in her system. The two treatments negate each other (PE removes IVIg). She would probably need a temporary port for PE, otherwise it’s too slow if done with a smaller access line (IV or PICC). If her doctors agrees to try PE, maybe 3-4 days worth, followed by a day of rest, then more IVIg… would help to bring her around.June 26, 2017 at 3:14 pm #112907
Hi, I am the wife of a man with GBS who was in a coma for 8 weeks. I was also told that he was in the 1% of most severe cases. My husband presented from the face downward and was on a ventilator for many weeks. In addition, he also had hospital delirium. We had recently moved and I was all alone. I know that it’s hard, but you have to keep hope alive. Every day I went to the hospital with books and music that my husband liked, and shared interesting stories from the news or family members. I spoke to him constantly, but I think that I was also trying to keep myself together. Eventually, and very slowly, he recovered after much therapy and hard work and now is able to walk, talk, and even play golf! We cherish our time together and each other. Have faith, try to not lose hope. Talk to others (or yourself if that helps!) and be kind to yourself, too.
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