Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Gullian Barre syndrome- autoimmune

I just want to add the doctors have said that he has progressed into a state relative to what is normally the two week advanced stage. It was heartbreaking to be in the ICU watching this mysterious syndrome take over his body, they say he is mentally alert and knows he is losing this fight so far.
I can only imagine his thoughts at this point.
Reading stories of those who have survived, it makes me grieve to know what he is going through.

Update, and I dont know all the details, but they have been trying to feed Larry through a tube but for some reason they had to extract the food from his stomach. I am asumming his digestive muscles are not working? Just my guess at this point.
Tomorrow they are going to try to go into his stomach and feed him that way.
Also they are planning to move him to a larger hospital in the capital city
At some point soon.
I will update tomorrow,
I want to add some thoughts, from what I have googled, GBS often follows a surgery or illness.
Also note that he was severly burned and had many skin graphs to his leg when he was young, And recently had the flu.
Is there a link to how your body percieves trauma and autoimmune disorders?
The answer is yes, and I would bet a rhubarb pie that I am right.
Thanks for prayers for him




I

Elmer

a sense of humor even through this hard time. I am so sorry Larry is going through this, my heart goes out to him and his family and you too. I can't imagine what everyone is going through. I hope his medical team will figure out how Larry can get nourishment. Can he still wiggle his toe? I wish I could do more.

When I went to visit him he could not move anything, he cant even open his eyes. The night before my visit I was hoping to communicate with a letter and number chart, by the time I got there he had lost all movement the prevoius night.

The tears fom my eyes mourn the loss of the person I know as I knew him.
At any rate, he will never be the same person, even if he does recover.
I know of a lady who passed away of cancer, she kept saying god would heal her body.
Someone had said that her prayers, and those who prayed didnt have any effect. But she Was healed and here is the proof.

Revelation 21: 1-4
Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heavenfrom God.
Prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, " behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away "

I don't know where I was but I missed this post. I am sorry. It just brought tears to my eyes. I am for him and for all of you family.

Thanks for sharing the scripture. This has to be the most wonderful group of people we could ever find. I would love to get to be with everyone. Won't we have a grand reunion some day!

Hugs and blessings.

Oh yes, I believe in healing. I believe in the Ultimate Healing. We weren't promised all would be easy here on earth but oh what we have to look forward to. I love seeing you profess your faith! Thank you!

HI Elmer,

Thinking of you, your family, your cuz and his fight. He has hit rockbottom and only Heaven knows how long he will be there until he starts to turn the corner..... but he will!

SO much is NOT KNOWN about the aetiology of GBS but, yes, it is VERY COMMON that those who get it have had a 'relatively minor' illness about 4-6 weeks before onset. Often respiratory illnesses or gastro being the most common.

They can feed him via IV but it is costly and via a naso-gastric tube is better to keep the gut going anyway. They will try again and will usually start with small amounts and build it up gradually if he has 'failed' the first time.

The care will be tiptop if he is in a bigger hospital where they are more familiar with manageing GBS. Make sure he has adequate pain relief when they do his passive movements and muscle stretches - I have had many GBS patients tell me (when they hit the rehab ward...) that it was often really painful and they couldn't tell anyone or respond with grimacing or eye-scrunching if they had lost control of facial muscles as well. This is the sort of difference that being in a tertiary centre might make - just a better level of understanding that comes with familiarity.

Hoping he is quick to start the slow climb back to full recovery,

"What She said!!!"

Joyce - you are SO right about that! I often think about the incredible level of pastoral care that goes on here - I would so love to be able to meet up with everybody one day - it sure would be like 'old home week', wouldn't it?

We are truly blessed to have been brought together by this disease which truly is a curse! Thank goodness for the upside!

So true Louise.

Hugs.