Sudden GBS… they said us..

Sorry to hear about your mother’s condition.

It is a very difficult time for you, and it is even worse to deal with subtle medical terms in another language. I’d urge you to find sites, or people, that you can help you in your native Italian.

You might find this brochure helpful:

[url]http://www.dsa.unipr.it/giavelli/GBS/Italian_GBS.pdf[/url]

I have heard of GBS happening so quickly. I do not believe it should affect any brain functions – unless she was deprived of oxygen for a long period of time.

Plasmapheresis & IVIG (immunoglobulin) are common treatments for GBS. Make sure they DO NOT try steroids. Steroids & GBS do not mix!

I have never heard of the 30-45 day curve.

I hope your mother gets well soon.

Kelly

Hi Frank

So sorry about your Mama.

My feeling is that every one around her should remain as positive as possible. The paralysis is frightening and obviously it can be easy to think the worst.

I am grateful that my family and friends helped me grieve and laugh things off. At one point, I wanted to sell off all my guitar gear and quit. My wife who hates having a house cluttered with amps and cords wouldn’t hear of it. I’m glad because i have started to play again.

My neuro was also upbeat about the first 45 days. After that, I at first thought he was nuts. I had hoped for so much that I was disappointed.

Looking back, I believe he was right. I regained the ability to walk around a bit, make coffee, all within the first few weeks. i didn’t think this was a lot but from my hospital condition it was a great leap.

I have personally met people who have been in your Mama’s condition and have regained their lives. Stay hopeful, she could also be so lucky. It’s in the long-run that you all can deal with fears.

For now you may have to just be hopeful and look for reasons to be optimistic.

Best regards

Welcome to the forum, it is good that you are looking for answers for your mother. First, I think she has a very normal case of GBS, many people who get GBS go completely paralyzed within 48 hours. 30% also need help with breathing, just like your mother. I think what the doctor means by the brain, is that some of the “Cranial nerves” might be involved, that is why she cannot shut her eyes. This is not brain damage & should heal in time.

The 30-45 days he is referring to is what is called the “nadir”, or the point at which the patient reaches their lowest or worst condition. After that, the healing begins. It sounds like the doctors are very good and know a lot about GBS. She is getting the correct treatments, but this illness takes months to heal. I know it is very hard to see your mother in this condition, but she has an 85% chance of making a very good recovery. She & her family just need to be very patient.

PS For those of us on the forum, remember that to this poster English is a second language. Pick your word choices carefully, trying not to use the medical jargon so many of us here are used to using, big words, or idioms or cliches. He seems very concerned about his mother, but to me it sounds like a classic case of acute GBS, or AIDP. That is a good thing…

KUDO’S to all that have responded to this person in need. I’m with you…. choosing words that are caring, informative and most of all supportive. take care.

Frank,
Hi, welcome to the forums.
Sorry your mother is going through this. It is very hard for you and family.
Strange feeling in feet and hands is normal with GBS. GBS does happen quickly. After the 30-40 days your mother should start her recovery.
Recovery will be slow. She will need family support now and in the future.
Blessings to your family.
Shirley

Please give updates on your mother.

Frank,

I am sorry to hear your mother has GBS. As others have said, it does sound like a typical, severe case. I was diagnosed in 2005. It took 4 1/2 days from my first symptom to full life support. I was completely paralysed for about 30-45 days. I had the IVIG (Imunoglobulin) treatment. I also had cranial nerve paralysis. The GBS had affected most of my cranial nerves. I couldn’t close my eyes all the way. The hospital would put eye drops in and a gel to protect my eyes from becoming too dry. I spent a total of 2 1/2 months in the hospital. Four weeks of that time was spent in an inpatient rehabilitation section of the hospital. I was able to walk out with a walker. I spent another 4 months doing out-patient rehabilitation 3 days a week.

Your mother WILL get better. It will just take A LOT of time. Encourage her. If she can blink better one day than she could the day before, that is progress and healing. Tell her she is doing great. She will need a lot of rest, but she will also need encouragement to push forward as she heals.

I will keep her in my prayers. Let us know how she is progressing.

Tonya Correll
GBS 2005

Hello Frank
I have GBS. I was in the hospital one year ago this week. It was very scary and I and my family were very worried. I am 61 years old and I am about 80% better. I can walk, drive, clean, cook, cut the grass, make wine and do just about everything I could do before getting GBS. Good luck to your mother, she will get worse but then she should get better. Remember she is scared and needs her family to be strong for her.
Harry

Hello Frank from another Frank.

I had a very swift case where my first symptom was a swallowing difficulty at noon on one day and I had to have breathing assistance 22 hours later and couldn’t move anything by then.

Everything the others have said is good advice. In my own case, I was able to move a bit more after about 30 days, but I still needed breathing support for 9 weeks. I learned to focus on the progress made very few days which everyone experiences to some extent. It is good to celebrate those achievements rather than dwelling on all the things that one still can’t do.

Frank,

Keeping her sedated at this point is actually better for her. I was sedated while intubated and for a little while shortly after I was given the trach. Because of this, I do NOT remember the worst three weeks of my life. I would like to remember, but have been told it is better to not remember. I will say, that even though she is sedated, she may not remember everything that is going on around her, but some things will make it to her long term memory. If she is allowed, it is a good idea to play inspirational music or whatever type of music she likes, in the room. When you are allowed to see her, tell her she will get well. She knows you are there and can hear you. Having the trach will make caring for her easier. Make sure they are turning her so she does not develop bed sores. Have the therapists remember to stretch her back muscles. I also had a little pneumonia. When they took x-rays every few days, I remember them tilting me forward to place the film behind my back. It HURT!!!! I was recieving range of motion therapy on my arms and legs, but they didn’t stretch my back muscles and I could feel the pain every time I was tilted for the x-rays.

Since she is still receiving the IVIG, it is normal for her to continue to get worse. Do not worry too much. She WILL get better. I will keep her in my prayers.

Tonya Correll
GBS 2005

Tonya & others,
I just wanted to thank you for both of your excellent posts, I think you have shared exactly what Frank needed to hear. Once it is correctly translated for him, what you have said will help this family out greatly. This forum can be so wonderful at times, it makes me proud to be a part of it.

Sorry I have been away from the forum for a couple of days. My family had me sedated much of the first couple of weeks too as they thought I was in pain. I was definitely uncomfortable, that is for sure. When the legs are stuck in the same position, it quickly becomes uncomfortable so make sure that there is good pillow support for the lower legs when she is on her back or side.

The most frustrating part for me going through this was an inability to communicate. For that reason, my family and friends were with me for much of the day. I guess being in Nairobi where rules could be overcome was useful for that. But I could move my eyes so I was able to repsond that way. We also devised a very clever board of letters and colors so that I could spell out words by moving my eyes. If I didn’t have that way of communicating, the whole experience would have been much worse.

I also had pneumonia twice and was able to beat it, even though I was obviously very weak. It will help that your mother now has a tracheotomy so that they can more easily suction secretions from the lungs.

Let us know if any other development happens. We are all hoping for the best!

Frank83,

We haven’t heard from you. How is your mother doing? Both of you are in my thoughts and prayers.

Tonya Correll
GBS 2005

That is wonderful news!!!!! She is taking the first small steps to recovery. Your mother may be confused during your visits. It can be because after a little while, she is tired and can not concentrate any longer so seems confused. It could be caused by any medications she is on.

You mentioned that she is now feeling pain. If she has not already been started on pain medication, I would suggest that you strongly want her on a pain medication like Neurontin, Cymbalta, Lyrica, or one like these. It is important to keep her comfortable during this recovery time. The more pain she is in, the less she will feel able to do and she will become tired faster.

Please keep us updated and I am so happy that she is starting to show improvements. As I have posted before, EVERY small improvement is a huge step at this point.

Tonya Correll
GBS May 2005

You’ve been doing very well in getting your ideas, concerns and frustrations across to us. Don’t worry about that? Just keep trying!
That she is improving, tho slowly? IS good news. Just remember tho, that even blinking her eyes can be an exhausting effort. This condition makes you sooo tired! For example, you take a sip of water? Then nap for 4 hours!
I do have to ask tho? Are the docs getting her to sit up? I understand that this is very important to both being able to breathe better [avoiding pneumonia] and also to improve overall body circulation. Also, have any physical therapists started to do exercises on her arms and legs? Just keeping THEM moving is useful in the long run.
Remember, that with this sort of immune system assualt to a person’s body, it will take a long time and a lot of work, exercise, and encouragements to get thru it! Most of us never just ‘get better’ then, up and out of bed. Wish it were different, but it is not to be.
My heart and my prayers are with you, your mother and all of your family.
Please, please keep us up to date on her progress! We care!

Good News! I am happy your Mother is showing improvement.