my dad has GBS

I feel very sorry for you, you are going down the same path we ahve travelled with my FIL. He is 80. He got GBS in June.
He was int he army, very active all his life, never got sick. Then he complained about pain in his calfs. He has diabetes, and the dr thought it might be because of that. so he ordered the electro test for him. Well he woke us up in the middle of the night, he was screaming in pain, we dailed 911 and the ambulance took him to the ER, we are in Denville, NJ. It was a great hospital. He was diagnosed about 48 hours later, first they thought it was a diabetic condition, then maybe a herniated disc, since the pain was in his calfs and working up his legs. It was not numbness, but pain he had. Then that same evening he was eating dinner at the hospital and his eyes started rolling back and he wasnt able to chew his food, it was falling out of his mouth. Then they thought it was a stroke, so they did all the tests for that and everything came back negative, then they thought it was Lyme disease. they did the spinal tap for that, Lyme cam back negative, but the white blood cells were high, which means it was GBS, the nurse printed everything out she could find ont he internet. I was so fed up I wanted to take him home, we were there two days and they could not find out what was wrong with him!. But when I read about GBS, it was amazing, the symptoms were exactly what dad was going through!.
He was there for about 2 months, he only lost use of his legs, waist down and mouth, eyes and head. He was never ventilated. they say ti was because they caught it early enough. When they were testing for Lyme and herniated disk, they had already started the IVIG.
After he was able ti be released he went to a rehab facility, but then went to the hosspital with an infection twice. His bladder stopped working so he needed to have surgery for a blockage. then a catheter was inserted.
Anyway, he finally left rehab and came home, he has VNS and Bayada comign home and helping, and my two SIL’s came over to help and now my BIL is here to help.
He is getting better, he just does better at home, he has his grandkids with him and wife.
before he fell ill last week with another UTI, he was walkign about 20 steps with his walked and making a uturn and walkign back. He was transferring himself from the wheelchair to sofe, to bed, to commode.
He is weak now, but we are doing exercises and resting and he will get his strength back slowly.
Becasue he was so independent he hates being in this situation, he thinks that he is a burden to us.
Anyway, my FIL is older than you dad, so you can see that it should provide you hope that your dad will get better. NYU is a great hospital.

jam,

there may already be a good sign you have, in that your dad opened his eyes slightly. From what I understand the one wouldnt open before. As I said, this may be a good sign. Keep a diary and every new little movement he does, nomatter how small, is a sign of improvement. If we dont right it down, somehow a few days later it often slips our mind and we cant quite remember what happened when. Your dads progression seems quite normal, some people take only 24 hours, or less, to get to being completely paraylized.

The docs should wait a little longer to see if there is any improvement before they decide that the IVIg wasnt effective. The thing is, if the IVIg was effective, and they do plasmapharesis, then they will wash all the good out of his body. IVIg doesnt necessarily stop the progression cold, it sometimes has to run its course a little further, but if effective, it does help the improvement move faster (to put it basically).

A few things to keep an eye on ……. Bowls – please make sure that through all this they are emptying his bowls. Often they get forgotten and the patient is in terrible pain because nobody thinks about them.
Keep an eye on his feet, does he have anything on them to prevent foot drop? I’m sure they are dilegent in suctioning him as failure to do that could cause fuid in the lungs and could cause pneumonia.

Have you thought of having an ‘ex’ GBS patient come in to speak with him and your family? That can be a great help. Also, leave your name with the GBS/CIDP Foundation and they will send you some booklets and newsletters etc.

Hi Jam,

Welcome to the Forum and I hope you have time to go through some of the posts here as they will be very helpful in answering questions that you may have. First off, it sounds like a very classic case of GBS an it progressed quickly as it does sometimes, but the good thing is that they recognized it quickly and not days or weeks later. Like Ali said too, if he is moving his other eye, that is a big step forward! It is a slow process of recovery, and very frustrating for your dad. As far as others his age, I know I have read many other cases with his age, as age is not really a factor at onset. His physical health can help in in recovery though in my opinion. Good luck to you! Gabe

This week marks the two year anniversary of release after 9 weeks of hospitalization. GBS started about the same for me and as quickly. I was 64 at the time and my daughters found this forum as well. What they found out helped them a lot and provided encouragment for me. The good news is diagnosis! The sooner treatment gets started to slow progression the better and faster will be recovery. I got into a really good acute rehab (5 weeks) hospital and was able to walk out – with a walker. AND after a few more weeks of out patient, I could walk on my own; using a cane on bad weather days. Encourage your dad, most every one recovers. Do not lie to him though – it will not happen over night and will take time and work. As Gene says, rest will be important. Don’t let him do too much at a time and rest between sessions.
God Bless Dad!
Al
GBS Aug ’05

hi jam & welcome,

this is not good news. the ivig was working & now the pp will wash it out. each works on 70% of gbs cases. let’s hope the pp also works for him. if he gets worse, the ivig should be administered. the trip for the mri can easily tire him out & cause him to feel poorly. ali means bowel, not bowl. is he in any pain? amazing that nyu doesn’t know not to wash out the ivig so soon & w/o reason. take care. be well.

gene gbs 8-99
in numbers there is strength

Yes Gene …. bowel not bowl, sorry about that 😮 . GBS patients can often be very sensitive to noise and activity around them, it just messes with the senses and one can become very anxious and exhausted.

I had GBS / Miller Fisher variant and had similar problems to your father. Onset was double vision, tingling in my hands and slurred speech which quickly progressed to being unable to walk within 24 hours and full paralysis and on a vent in 48. Luckily this also meant quick diagnosis and treatment (ivig) So yes, such a quick progression is not uncommon with GBS.

My recovery was in the reverse order, my eyes were the last thing to come right

Hi iscouraged either. A positive atmosphere is very important for a good recovery-alot of humor helps, and laughter , Welcome to The Family. Recovery is really slow. He has already showed some in his eye movement. Acute onset is one of the symptoms of GBS. Mine is in less then 2 hours, each relapse I have had has been acute onset. Recovery for me, well I can’t say which way for sure after the initial paralysis event, because I was asleep when I woke up 2 hours later paralyzed from neck down, with a numb tongue and facial droop, but it started from the neck down and stopped in the belly, with my fingers wiggling, leftside came back stronger then my right(I’m right handed) my toes started, leftside first and stronger the right followed. Each relapse and recovery has been unique, so it really is an individual recovery process. Some say with acute onset comes acute recovery-not always true, even in the same person:o . Don’t get discouraged, don’t let your Dad get discouraged either. A positive atmosphere is very important, alot of humor and like they say-Laughter really is the best medicine. Make sure your Dad is being treated for nerve pain, if he is uncomfortable, ask him if he has pain, or electric zaps, currents, buzzing in his body. Neurontin or Lyrica is good for nerve pain. Always ask your Dad if its too noisy, too bright, too warm/cold, or if he is alright with the sheets on his skin, alot of us had sensitivities to things, all sorts of things. Keep your Dad in the present, up to date on his progress-good or bad, don’t hide things from him, when he gets off the seds of course. Yes he hears everything, if he had good hearing before GBS, that is. He might have bad hallucinations while he is under the meds, not unusual.
Feel free to ask as many questions about anything, or just vent when you need to. We know how you feel and how your Dad feels, We’ve All been through it in one way or another. Please make sure your Mom takes care of her self as well, when your Dad comes off the seds he will need you All at your best. Take care.

jam,

neurontin for pain. many of us take neurontin [gabapentin], 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 absorption 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

Jam, having pp soo soon after Ivig only washes out the ivig. If pp is going to be admins then it should go first with ivig following. That way the ivig stays in his system. PP cleanses his system, its a type of dialysis of the blood-sort of. You might ask the dr if they are planning on giving another round of ivig to your Dad, if not then ask why not and if you don’t like what you hear than request it be given. It won’t hurt him, as long as he had no problems after the first treatment. If they do give ivig to him again, make sure they premedicate him first with tylenol and benadryl-it helps make him more comfortable while getting the ivig.
People who are paralyzed or numb do feel pain, some drs don’t believe that is possible. With me I didn’t have pain with my initial paralysis, it wasn’t until a month later after I had a bone scan with a radioactive injection that I started to have alot of pain, which lead to another relapse a month later. Since then I have had pain, all different places and types along with other weird sensations/feelings. Gabapentin(generic Neurontin) works on nerve pain, as does Lyrica-the newest member of the neurontin family. They are anti seizure drugs, but are also nerve pain drugs-no chance of addiction-non narcotic. Very safe. Narcotics will suppress the breathing muscles-which for someone on a vent or with labored breathing doesn’t want to use-and they don’t work as well on nerve pain either. Another thing to make sure they are doing for your Dad is therapy, pt range of motion should be done on him everyday, to help keep the muscles from atrophying. Keep an eye on his feet for foot drop, use pillows between his feet and the foot board of the bed, or use foot drop boots on his lower legs and feet. Also alot of us got injections in the belly to prevent blood clots, along with epc cuffs on the lower legs and feet. Prevention is best, dealing with the problems afterwards is extremely hard on GBS patients and can hinder recovery. Watch for bedsores, rotating and propping the sides and rotating every 2 hours is a must to prevent bedsores.
I can’t help you as far as financial issues, I haven’t had to deal with that, my situation was different. You might have to start at home and go through all the papers and piece things together, other than waiting until he can talk to tell you about this and that. The energy should be saved for supporting your Dad, worrying about things that are out of your hands are a waste of energy. Take care.

Hi Jamma,

Regarding the financial situation for your dad, ask the nurse/doctor to order a social work consult at the hospital. They might not even need an order, but they can help you get power of attorney, or POA for your mother for financial matters and health care matters as well. Anyone from the social work department is able to help with this. Good luck! Gabrielle

An unfortunate welcome to this world! I wish for your dad’s recovery. I also discovered this site when my mom was diagnosed in May. First, I was freaked out in general by this bizarre illness that no one has heard of, then I was panicked because my mom is 79.
This web site and forum are a wealth of information, education and comfort from truly caring people who understand what you and your family are going through.
It is a long haul for recovery. Be assured, recovery happens. Granted, life may not necessarily be the same, but recovery happes. Stay positive and keep encouraging your dad to stay strong and assure him he will recover. It has been said many times in this forum- GBS means Getting Better Slowly.
Jenn

Hi Jam,
My onset at age 52 was very similar to your dad’s, as was the treatment: I had IVIG first, followed by PP because the head neuro @ Emory Univ. Hosp in Atlanta didn’t like my slow progression. Every neuro is different and has his/her own way of looking at things. The PP worked for me, whereas it didn’t look like the IVIG would.

Lots of good advice from Forum members. Neurontin/Gabapentin is the drug of choice for nerve pain. Your mom needs to get a handle on her finances quickly and POA is the best way. Your dad also needs reassurance that his is not an unusual case, though for him it will seem so, it always does. Finding someone to oversee his care right now is critical. His frustrations will only deepen if his needs are not met, both physically and emotionally. Is your mom able to spend large portions of the day with him, running interference with his caregivers? He needs that, at least until he gets totally weaned off the respirator and can be a little more in charge. Until then he needs a champion to do it for him.

As for someone to come see him, look into a local GBSFI chapter in the specific area of NY where he’s hospitalized. There shopuld be someone there who can help with that. It’s very important that he “see and hear” for himself that people do come back from this experience.

As Byron mentioned it is very important that your mom and the family spend as much time with him as possible. When I was in Icu or ccu my wife told me that I would not respond to the nurses or doctors untill she hollored at me. Your Mom knows him best and can tell his moods and Byron mentioned run interference. I got a bed sore when there and the wife being a cna at the time raised the roof around there got, t he head doc of ccu involved and chewed some tail around there. The support and encoragement of my family was key to my recovery.

Joseph

Hi Jam,

I just wanted to tell you about my fiance’s case of GBS. Ben was only 37 when he got GBS two years ago, so his recovery is most likely going to be different from your fathers. However, Ben had a severe case of GBS and almost lost his life to it. He became completely paralyzed within a week, had a high fever over 102 for three weeks in the hospital, developed MRSA and was allergic to the meds used to treat it, had a WBC count of 222,000 and pneumonia in his left lung. He was in a medically-induced coma unable to communicate, and it was the LONGEST three weeks of my life. As he started getting better, his doctors predicted he’d be in a wheelchair for 1-3 years, but he was walking again after two weeks (his young age probably played a huge part in that).

I just want you to know all this because you can’t start to give up now. It seems like your father is making improvements, and he will get better.

Best wishes to you and your family!

Shannon

Jam, it would be best to have a case worker work with your Mom on trying to get him moved. He more than likely will need a referral from the dr to get a second opinion, at which time you or your Mom bring to his/her directly the name of the dr you want him to be seen by and exactly what hospital and ambulance service you want him to be provided with. The insurance needs the dr or caseworker to request this move for it to be considered a necessity and they will pay it than. You and Your Mom are Your Dad’s voice and health care advocates until he can do it for himself-Never Give Up, Never Give In. Be insistant with the dr and all the details, if you aren’t the drs won’t take your requests seriously enough, and the care of your Dad won’t get better. I learned that along with my hubby, the hard way. If you want to get the attention of drs, have the head nurse write in HUGE LETTERS on his medical chart, what his needs are as far as communication. All drs and therapists have to read the chart first before they see the patient. You have the right to do that! Take care.

pin the note to his bed sheets, someplace so obvious & unusual that the docs will see it. neurontin is what he needs for his pain. many of us take neurontin [gabapentin], 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 absorption 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

Jam,

If he has pain in his bowels, he could be constipated. You may want to double check and make sure he’s on stool softners to go to the bathroom easier. Ben had problems with that as well. It’s from the intestines being paralyzed and not being able to move the bowels, and being on different meds doesn’t help either, especially if he’s on any narcotics.

I can’t really give suggestions for the communication other than what you’re doing. Ben and I were fortunate because we both just happen to know sign language.

Good luck with everything!

Shannon

They said the same thing about me. Told my wife I would never walk again and would be in a wheelchair and in Long term care the rest of my life. I am walking now and can walk without a cane on level good ground. I will be praying for your Dad

ditto joseph. they don’t know the future. we have disproven them time & time again. never give up. never give in. take care. be well.

gene gbs 8-99
in numbers there is strength

jammamma,

the nervous system controls soo much & anywhere nerves go, gbs can do damage. i was too hot for years & had what i called alligator skin. it took time, but both went away. well, my feet still abnormally heat up & hurt toward day’s end if i’m doing too much. take care. be well.

gene gbs 8-99
in numbers there is strength

Jam, I’m sorry to hear all that about your Dad. Please give him my best. As for Mom, can she take a smaller dose of xanax? Maybe its getting to be too high a dose for her. You All are in My Thoughts and Prayers. Take Care.

jam,

erratic blood pres can easily be caused by gbs. it is treated the same way as if the blood pres was caused by non-gbs means. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Jam. Your story sounds so much like what my father is going through. He is 73. I have just found this web site, it is very interesting to read what other folks are going through. Dad did not open his eyes for 6 weeks, even though we new he could hear us. He seems to be getting better, still on the vent and is slowing moving his neck and wiggles his body. I would love to talk with you more. If you have time will you email me at [email]teresaepley777@yahoo.com[/email]? We have never heard of GBS until now. Just looking for answers.

[QUOTE=jammamma]Thank you all for your encouraging words. I know that one of you said that doing plasmapheresis too early would offset the IVIg but they have already started it. I have to say, it is very interesting to watch. Anyway, they slowly reduced his Propofol (sedative) today and he became quite alert. He was definitely cognitive and did not seem to have too much discomfort. However, when asked if he wanted them to turn it back on- he was practically yelling with his eyes. I know he can hear us and I think that all the chatting around him was making him upset. His fever spiked tonight to about 102 but they say that it is just par for the course. They were talking about doing the trach within the next few days.

A question for those who had GBS and for those with the Miller Fisher varient (which they have discussed regarding my dad): Did your recovery go in the same order as the symptoms appeared, was it opposite, or did it happen sort-of randomly? For instance, since my dad’s was descending, will he start to feel more movement in his feet or will it be in his upper extremities?

Thanks again for all your insight. -Jam[/QUOTE]