Info needed… please post here and help us…

hi crystaly01 & welcome,

most important – since he has been Dxed w gbs, he should have already been given ivig or pp. if not, see that he is given ivig. more nerves are being destroyed while they wait [this happens more than many of us care to see]. no one knows how long nor to what degree each gbser will recover. it effects each of us differently. the good news is that recovery will be in his future. keep us posted on this thread. take care. be well.

gene gbs 8-99
in numbers there is strength

Chrystal,

Please contact the foundation at 610-667-0131. They will send you a GBS information packet today. If there is anything I can do for you now please let me know.

Hello,
And welcome to this forum. We become a family here because we feel what you feel. We understand. If you will let us know where you and your uncle are, we might be able to find a member in your area and we might have a liaison in your area who can visit you.

NEVER NEVER NEVER NEVER give up hope (not with this syndrome).

Every case is different as well as every recovery is different. The good news is he will recover but….( I hate buts)…recoveery is very slow in coming. Stay on top of the nursing staff and your neuro…..make sure they answer all your questions, no matter how small or routine….check in on the IVIG treatmeants (I just went through my 2nd round last week and I am feeling better today than I have in a while).

Take Care and God Bless
Stephen

You have come to the right place for support and info. There are so many helpful individuals here. They are right, with GBS, time is the great healer. I was paralyzed in the legs, and in ICU 3 days, however, I did not need ventilator. It has been 4 months, but I am walking unassisted and have returned to work 2x week. I am lucky. I did not receive IVIG, I had 5 plasmapheresis treatments, and I got them quickly and I believe it spared me from further nerve damage. I will say a prayer for healing of
your uncle.

Hello Crystal,
Our foundation has a liaison in Broomfield, CO, which is the Denver area. Her name is Ann Brandt. Try to contact her at 303-438-1428
Liz

crystal,

as long as he is in no pain, his position in bed must be changed several times per day to avoid bed sores. also he should be sat up a number of hours to avoid pneumonia. bp fluctuation is normal w a gbser, but must be controlled if too high. does he like to listen to music, watch tv, etc.. take care. be well.

gene gbs 8-99
in numbers there is strength

crystal,

I’m so sorry about your uncle-family can be such a HUGE help with recovery; just know that you are in our thoughts and prayers.
I also had bp flucuations, and they are pretty common because GBS can affect the nervous system in so many ways. Also, make sure he has ankle support boots to keep from foot drop-it will make him more comfortable as well.
Please take care and let us know things are going.
-Kim

Hi Christaly01,
My 18 year old son is still in ICU on a Trach now & Feeding tube in belly. We are going on 4 weeks this coming Friday. This illness does bottom out, for my son it was @ after 1 + weeks, then slowly you’ll see improvement. Today day 26 he took 2 steps with help from PT. Your uncle will have good days and bad days. It’s like a roller coaster, but you have to be prepared for it and be strong. If it looks like he will be ventilated more than 2 weeks his Dr. will probably recommend a Trach, which made my son more comfortable. The hospital had a alphabetical chart in which he was able to point at (sort of). He had some movement in his right hand. Then we went into the questions, is is about your body, is it about your upper body, lower body etc.. we tried to all stay consistent (even the nurses) so he didn’t get frustrated. Keep in mind more than likely your uncle is on a type of anesthia medicine in which he may have his eyes closed but can hear everything you say. But the good part is he won’t remember the tubes in mouth/nose. The medicine helps them forget those days. If I can give you any other insight, please let me know as we are still going through this in ICU.
TMR’s Mom, Nancy

When I was at this stage, I can still remember being faintly aware of having my hand held by a family member, maybe it was the consciousness of the closeness of a loved one, and I would experience a feeling of my life strength brightening within my body with this connection or closeness. Holding his hand, and encouraging him could also help you feel less helpless. Watching a family member in your uncle’s condition is more difficult than being the patient, from this patient’s perspective. The worry on my loved ones faces was worse than the state I was in. I don’t know if this helps you feel any better to glimpse one person’s experience of being at the other end of this spectrum of experience through the journey you describe, but I hope so. You clearly really love your uncle. God’s blessings to ease your soul. Best wishes!

🙂 Be sure you talk to your uncle. He probably can hear you. You need to offer him encouragement and tell him he is acutely ill and WILL recover. He needs to have faith. Make sure he gets ivig. I did not get it and am still very angry about this. He is lucky he was diagnosed correctly. I was not and I was in a famous Boston hospital at the time. Just goes to show you the neurologist is very important. I had an incompetent one at first.
Follow everyone else’s advice. The GBS Society saved my life.[QUOTE=crystaly01]It seems that everyone’s case is different.

My uncle is a new victim of GBS. First night (Monday), he had diarrhea. Next morning, he went to the hospital because half of his body was numb, and he felt pain in the neck. The next day, he could not stand and fell. Soon that same day, he could not lift anything with his hand. The day after, he could not move at all and could not breath on his own and went to ICU and got very weak. Last night (Saturday), they put all kinds of tubes in his body. Today, he was out of conscious most of the time. We don’t know what to do.

I want to know everyone’s case and how much time it took each stage to change. Everyone is so worried right now. And we don’t know if my uncle is in the weakest time period now, or if it’s even “just the beginning”… Please help us by posting what you know. Thank you.[/QUOTE]

Hi there,

The communication needs some work. In order to talk effectively and find out what he wants, try to orginize your questions. One blink of the eyes for yes, two for no. Keep it simple for a bit, or until the tubes are removed, or relocated. Start with catogory questions. Do you need personal care? Is it pain? Then move into specific questions once you know the area of his concern. Here’s one thing about pain, that’s never talked about here. There are different kinds of pain. A patient can indeed tell the difference. The problem is, in these situations when intubated, and a patient still isn’t sure what happened to their body, every pain is GBS. Even for the docs and nurses. While intubated, I got a bladder infection. I endured 3 days of intence and different pain, before I could convince my wife via an alpha board, that something else was going on. Actually, she was convinced the first day, but it took two more days to get the nurses to call in a doc and check it. It’s just GBS pain. Don’t worry about it. The pain felt different then the pain I was experiancing, but nobody would believe me. Remind him that if he thinks something has changed for the worst, or pain is in a new area, then trust yourself and try to get action taken. Sounds like he is coming out of it and recovery is on it’s way.

PS. It is a known fact that when a sence is lost, other sences will increase. My hearing increased considerably while unable to talk, just as a blind person’s hearing increases. That’s why noises are so grateing during those times. He can hear just fine so don’t have anyone raise their voice while speeking to him, which is quite common for people to do.

crystal,

adding to racer’s pain comment. ask if he is in extreme pain? Rx for pain is neurontin. many of us take neurontin, a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorbtion max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi I am new to this forum but not to GBS, I was Diagnosed when I was 14 and it has been 17 yrs now since. I have to say I wish they had had this drug everyone keeps talking about when I had it this IVIG?? I might not have had as mush nerve damage that I do now. GBS is so frustrating because it is not like other illnesses, it has its own time frame and reacts it own way to the plasma filtering. I was paralyzed from the neck down when I had it and I was on a vent, I had alot of treatments with the plasma filtering. When your uncle does start to come out of the major part of it it is going to be very hard and even more frustrating I know I been there. He is just lucky he has such a caring and loving family like you to help him through the recovery, and remember he will recover.

AndyKat,

From reading your posts, I think it sounds as if you had plasmapharesis (sp), (plasma exchange) which is the other treatment to IVIG, and I believe it works along the same lines in stopping the progression. I believe, and I stand to be corrected here, that IVIG isnt as ‘invasive’ as plasmapharesis and that is possibly why they use it more often now. In my case, 20 years ago, and possibly in your case of 17 years ago, IVIG was not around yet, so pp was used. I personally would never say anything other than good about my plasmapharesis outcome, except that it was a horrible procedure. I think that it was the turning point, slow, but still that point where things started to change for the better. Thank goodness!!:)

Crystal,

Everybodies recovery is different and your uncle is in the very early stages of recovery. I had the pins and needles for quite some months but now I get them every now and again. He will continue to get better day by day but I am sorry to say it is a slow process.

Good Luck and keep us informed.

Debbie

Crystal,

That tingling/numbness does get better with time and with medication (Neuontin/Lyrica etc). As he gets better if he does too much the tingling and numbness will increase until he rests and recovers. During the recovery period it is very much a learning process also to see what your limits are and to try and keep the numbness at bay.

Jerimy

Crystal … the one thing that I know for certain is that positive thinking and thoughts are your uncle’s BEST therapy right now. I know that what he is experiencing and what your family is witnessing is terrifying but you MUST constantly remind him and talk to him about the fact that he will get better, he will get past whatever stage he is in at the moment. It may get worse, I’m not going to lie, but don’t dwell on that. My motto the entire time I was in ICU, “Stay on top of the bubble!” You cannot change the course of the syndrome but you must believe and know and hold on to the knowledge that he will get better in time. There is a light at the end of the tunnel … just keep staying positive and holding on to that realization. My prayers are with your uncle and your entire family. Be positive, think positive, and always stay on top of the bubble!!

Don’t hope for things that may not happen in the time frame that you want them to. Take each day at a time and just stay positive in the moment. There is really no ease for the pain and discomfort. That is part and parcel of the syndrome. They can give some meds, possibly, to help but my condition was so weakened that I couldn’t keep any pain meds down so just had to tough it out. It will be okay, though … we are never given more than we can handle, right?

I’ll be watching for further updates … Profer

Hi Crystal,

What he needs to understand, and take heed of, is rest for awhile, will be right up there with being patient. This period, coming home, and not so disabled, fools many a people. I see the trap forming as I write this. Some, end up back in the hospital, or experiance a setback and more trauma at home, then while in a hospital. All because the patients tries to do too much too soon. Get back in the saddle and back to life. If he wants to see others, have them come to him for awhile. Stay out of phisical stuff of any kind for awhile, cause the mental stuff will exhaust him enough as he settles into home and biz life. This is when patients discover just how much fatigue is going to play in life, and discover a few more residuals then they new, or thought, they had. Often precieved as a new attack, or setback, when it’s usually just the person exhausting themselves doing things they aren’t ready for at that point. Getting him exposed to the way things were before GBS, should be put off a bit until he understands his energy capasity better, and how to use it better. Until healing takes place over time, the nature of GBS residuals are that the more you repete a task, the more disabled one will become. That’s what GBS nerve fatigue does, that seperates it from other fatigue syndromes. Take things slow and diliberate and be cautious for awhile. This isn’t over yet. He doesn’t want to get back to see anything, he wants to get back to doing everything, and that can be a hard cold slap in the face if not careful.

Chrystal,

Racer13 has many good points. It will probably be better that most people visit your uncle instead of him visiting them. Energy levels will be very low and he doesn’t want a set back.

Good Luck and best Wishes
Debbie

Hi Crystal-

Happy to see your uncle is on his way through recovery. Is he on a supervised physical therapy program? If not, that’s where he should be doing his exercising/strengthening at. If his insurance does not cover p/t, call the p/t dept at the hospital he was discharged from to get some tips. You are right, he should not overdo it, and if possible take a nap in the afternoon or something. I know how he feels, with wanting to do everything. He just need sto listen to his body, and when he is getting tired, rest instead of pushing on. Hope this helps. 😀

Your uncle is in a difficult stage at the moment, mentally and physically. His brain wants to go and his body is agreeing with him at the moment. This is the time when he will start learning about energy management and how mental activity can be just as exhausting as physical activity. We have all been there and even after years of experience we still push our boundaries to see if they have changed. He is just trying to find those boundaries and hopefully will learn the warning signs of when to rest before he over does it. Allow him to do what he can, that in itself is therapuetical, but let him know that you are there ALWAYS to help with anything and that asking for help doesn’t show weakness, it shows strength.

Angela

Crystal,
My 30 year old brother, who lives in Denver, has just been diagnosed and is currently in the hospital. His Neuro is Dr. Hans Neville…I too will reach out to Ann.