GBS in a teen

Hey, Mom,

Sounds like he’s making a lot of progress in such a short time! Just hang in there; he’ll be off that stupid ventilator and mouthing off to you again before you know it. Ben (my fiance) developed GBS over the course of four days to a couple weeks (not really sure when the GBS actually hit, but he had had the flu for awhile). He was on the vent for 21 days and walking on his own in two weeks. He’s 37. I know it’s frightening, but your son will be fine.

Take care,

Shannon

hi mom & welcome,

i assume he has had ivig or pp. many get hit this hard. gbs stands for Get Better Slowly w emphasis on the slowly. since he is young & making good progress, his recovery time will be shorter than many. but on one knows for sure how long nor how much recvoery any one gbser will make. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi there,

He certainly has age on his side. I was 34 when I got GBS, went to bed fine and woke up paralyzed. I was never vented but was in critical care, in the hospital around a month and physical rehab for another 2 months after that. This November will be 3 years for me, although I still have numbness in my feet, I am able to do everything I could before except jump in the air and land without falling on my butt. So no basketball for me.

He will get better, it just takes time and there are no shortcuts. Listen to the Doctors and most of all he has to listen to his body, when he is tired he must rest. If he does to much, he will pay for it for a few days afterwards.

Has he had IVIG or Plasmapheresis yet?

Take care and ask lots of questions if you need to, we are here to help.

Jerimy

Hi mom, atleast that is what everyone else is sayin in the beginning of their post to you …lol.
I myself don’t have the disease, and i am only 15; but my mother does have this disease. She too got hit very hard and very fast with the illness. I don’t know much about the disease but I do know how bad it feels to see a loved one being hurt and know there is nothing you can do to make it better. What I tell my mom and will tell you is that everything happens for a reason and that if you put all your trust in God he will answer your prayers. So please tell your son that I hope he gets better and I will pray for him like I do for my mom.

Sincerley,
April Salzano

:p (I hope that makes you laugh..hehe)

Hi! Sounds like your son is making progress! I imagine though emotionally you feel like your going thru alot. My daughter was diagnosed with GBS in December at the age of 16. My daughter had a cold that seemed to be wearing her down, then one morning she could no longer feed herself and walk without help. She had some difficulty the day before but they said it was probably from Mono. She never had to be placed on the ventilator but she did have some trouble with swollowing and breathing. She unable to walk or lift her arms. We are now 6 months into it and she is able to walk without her wheelchair and making a remarkable recovery. But it is just as hard on the parent. She only had Plasmapheresis. Its a slow recovery. We were overseas and unable to do hospital rehab…we did alot of at home care and physical therapy. But with the help of a positive attitude from friends and family, patience and support we’ve came so far. This sight really helped me understand alot of what happens, not to feel so alone during the hard times and have an idea of what goes on. if you ever need to just email to talk or any questions I am here for you. My husband was gone at the time she was sick and not many people know alot about this so this sight has been my support. Again feel free to email me anytime…Susan

I too was diagnosed at age 18 and became totally paralyzed with a trach for about 2 months. In the hospital I had excellent physical and occupational therapy, and once I was discharged, my parents took me to PT at least 3 times a week for many months after. It is a slow process, but there is definitely light at the end of the tunnel. Since then, just over 20 years ago, I have led an active happy life, had two children, and not really worried too much about GBS until a couple of years ago. I wish you, your son and family all the best.

Tell your son to hang in there. We are all praying for him and wishing him a speedy recovery. This will definitely change all of your lives but some things will be for the better. Would it help if he received cards from some of us? Let us know.

Take care and god bless.

sherry aka: stormy

[QUOTE=TMR’s Mom]Susan, When did your daughter go back to school? My son is planning on attending UCF in august, however, I think we’ll now be looking at Jan. ’07. He did breathe 5 hrs on his own yesterday and so far 2 today! He had 6 treatments of IVIG in which they started on Sat, May 27th. It looks like possibly 1 more week on the vent as long as thing go OK. We are also looking into inpatient rehab. Did your daughter get depresed? My son was handed his HS diploma here at the hospital. So he missed his HS graduation adn grad parties. He is now on a anti depresent, which I hope will help. Any other info on state of mind, things to keep him busy in hosp. and rehab would help. Thanks for responding!
Nancy[/QUOTE]

Hi Mom,

I am 31 and came down with GBS when I was 28 when I came down with this stupid disease. One day I was driving 18 wheeler over the road and the next I was on the vent. So yeah, this thing hits quick. I stopped and went into the hospital in Flaggstaff,Az and spent about 3 1/2 months on the ventilator (they flew me to Denver,Co where I live while I was on the vent). Then I spent the next 2 1/2 months in inpatient rehab. I am still recovering. My feet are numb, and I have real bad tingling in my left hand. Granted, I didn’t get diagnosed and treated nearly as quickly as your son did. It ran close to 2 months before they finally started giving me IVIG (the doctors just didn’t know what was wrong with me…).

These folks are right, it will be a long and frustrating recovery for your son. Hang in there though, he will get better. As far as depression, I fought that as well. He may even need counseling. This being on life support is a VERY traumatic thing to go through. I still have nightmares about it 3 years later.

Jim

Nancy,

I had bad double vision during some of my recovery in hospital. I tried watching movies, but it was difficult, having said that, it was good to have that noise and try and watch for a while.

Mom,

I am all for inpatient rehab. I had both Inpatient and Outpatient. The Inpatient was first and then after a couple of months they discharged me and moved me to outpatient. Outpatient was a lot tougher because you had to get up and get ready to go there and then the travel to the facility, rehab, and the trip home really wore me out. I never drove but at that point even riding in the car was exhausting.

Jim

Hi Mom,

Ben had two weeks inpatient and after 16 months is still going to outpatient trying to improve his balance/gait. As a caregiver, I liked inpatient much better because I felt more included in the process. I think he liked it better too, although he was in very severe pain during that time.

Shannon

Hi again Mom,

I had both inpatient and outpatient physical rehab, when I was well enough I just wanted so badly to be home. They let me do outpatient rehab and it helped me mentally so much to be able to be home and be in that environment. Something to ask about when he is stable, maybe outpatient would lift his spirits.

Another thing to ask about, when I was in the hospital they were able to get me a computer with internet and that helped me pass the time. I loved being able to talk to my friends and family. I also did alot of reading, maybe you can get him some magazines or books to read. Also they usually have a vcr or dvd player you can get for his room so he can watch movies.

That’s all I can think of for now, a few items from home for his room might help also, pictures or something like that.

Jerimy

[quote=TMR’s Mom]Thanks to all of you for the info on GBS. I’m so gald there is a way to communicate with people that have had this syndrome. Although everyone has had different situations i.e. some vented, some not it is very helpful. My son had 6 IVIG treatments from day one and went to a trach after 1 week. It looks like he’ll be on the vent for 1 more week. Has anyone had inpatient rehab? What did you think of inpatient vs out patient rehab?
Thanks again to all who responded if you have any other additional info that might be helpful, please post. Also any ideas on how to pass the time in the hospital .. movies, TV etc…
TMR’s Mom[/quote]

Hi Mom ; I was hit at 20 with GBS. I was away at College in Nursing School and I thought I had hurt my back. On my 2 hour drive home my legs started to go numb . Within another 2 hrs. I had nothing from mid-chest down. It was a long haul to recovery but I eventually went back to school 3 yrs. later. Keep encouraging him to try because he will have days that he is going to want to give up. Don’t let him…. Physical Therapy and Occupational Therapies will both be of benefit for him. I did in Home Out-Patient Therapy. It made me feel more comfortabe because I was home and it gave me a safe feeling. Remember he will get very frustrated with himself from time to time also. So be patient. It sounds like he’s made great progress already. It took me over a month just to move in the bed without assistance and another 2 to stand with assist. You’ll be in my prayers. If you need anything let me know. P.S. a computor for him is a great idea. It will keep him in touch with friends and school.:)

Anita,

That’s awesome that you went back to school, no matter how long it ended up taking! I bet you’re a great nurse!

Shannon

TMR’s Mom writes:

[quote]My son had 6 IVIG treatments from day one and went to a trach after 1 week. It looks like he’ll be on the vent for 1 more week. Has anyone had inpatient rehab? What did you think of inpatient vs out patient rehab?[/quote]

He had a worse time of it than I did. I was diagnosed with GBS in July 1993, aged 20. I was in the summer between my first and second years as an undergrad student at the time, working as a cinema projectionist. A fortnight previously I’d had a 24-hour stomach bug (which, from what I’ve later read and been told, I suspect was Campylobacter). Carrying some films up the stairs I noticed that my feet felt a bit cold. By teatime that day I was losing feeling in them. It took around 48 hours from first noticing something wrong to having difficulty walking (I could still do it, but it was very hard work) and deciding that I needed medical help.

My GP, after asking the usual questions, did a reflex test on my knees. It was unresponsive, and he told me to go to casualty. A four-hour wait in casualty later, three doctors in a row couldn’t even begin to make a diagnosis. The last one looked me in the eye and said straight up, ‘There is clearly a big problem, but I simply do not know what it could be.’ I truly wish every doctor is as honest (or at least, as convincing a liar) as he was. The fourth doctor said that there were a number of possibilities and that tests were needed, but wasn’t willing to elaborate. I later discovered (from my uncle, who is a consultant neurologist and put two and two together from what I told him) that her first thought was that I had a massive tumour pressing against my spinal cord, would die very soon and didn’t think there was much point in telling me this. Eventually, about the 10th doctor who saw me suspected GBS, ordered what I now know are the standard EMG and lumbar puncture tests, and that confirmed the diagnosis.

The worst extent of my paralysis was inability to walk and a slight feeling of weakness in my arms. It never threatened my respiratory system, thankfully, and I didn’t need ventilation. The worst of it was that my legs ached and stung for days on end, which I now know was a lucky escape compared to some who had it worse. I had one five-day course of immunoglobulin and recovered slowly thereafter. I was a hospital in-patient for just over five weeks, and received outpatient physiotherapy for a year thereafter. To this day I still walk with a slight limp and try to avoid situations with big crowds. My klgs get tired quickly, and my right leg aches more than my left. This is because I now know that I had the axonal, as distinct from the demyelnating form of GBS.

Looking back on the experience, the scariest thing was the 2-3 day gap between first entering the healthcare system and being diagnosed, specifically the reluctance of doctors to pass on inconclusive information, e.g. ‘I don’t know’, or ‘X is a possibility, but we need to do Y to confirm or deny it’. The next scariest thing was not being told how acutely bad GBS can get in some cases, and the potential side effects of treatments. The Wikipedia page for GBS states:

[quote=http://en.wikipedia.org/wiki/Guillain-Barr%C3%A9_syndrome#Treatment]The use of intravenous immunoglobulins is not without risk, occasionally causing hepatitis, or in rare cases, renal failure if used for longer than five days.[/quote]

No-one mentioned these potential risks to me before I consented to immunoglobulin treatment. Admittely, Wikipedia shouldn’t be taken as authoritative per se, but, given that I received one five-day course of the stuff, I do wonder if the doctors who prescribed it did a risk/benefit analysis, decided to prescibe, but also decided that it was better that I didn’t know about the risks.

Because several of my relatives and a close friend are doctors, I had and have rather more ‘inside information’ than I suspect many a typical GBS patient does. In that context, the experience has left me with a big distrust of medical professionals. My experience was that if they’re the slightest bit unsure of anything, they’ll try to mislead you into thinking that they’re in control. I suspect that some of my doctor relatives told me things they wouldn’t have told Joe Public in a doctor-patient relationship.

If my experience and what I’ve read is correct, pretty much everyone who comes down with GBS will eventually make a 90-95% recovery. But it’s a rare enough illness that a lot of doctors don’t know precisely what they’re dealing with, feel that saying that out loud is a sign of weakness and be reluctant to spell out their understanding of the situation. Good luck, and be prepared to ask searching questions.

Leo,

Just so that everybody knows, a fortnight is 2 weeks. Not everyone in the U.S. knows that. 🙂

Thanks for clearing that up, Ali! I’ve heard the expression before, but always thought it meant the night before.

Leo, welcome to the forum! I enjoyed your post very much!

Shannon

Welcome Leo and thank you also Ali, I have always wondered what a fortnight was.

Jer

Nancy

Please give your son a hug and let him know he is in our prayers. My daughter was 14 at the time of onset and we were in England when she was stricken with GBS while on a family vacation. Brandy spent 7 weeks in PICU, vented and completely paralysed. As Brandy’s first year of high school had begun, the minute we returned home she went back to school – yes in a wheel chair and her oldest sister was there to help her. Brandy spent 5 months in out patient physical rehab. Within 2 months of returning home she was walking unassisted. Brandy returned to all of her activities within a year of onset up to including toe ballet. Take good care of yourselves and remember GBS stands for getting better slowly.

~Maggie~

Hi Mom 🙂
I noticed with my Fiance (he’s 35) that in the ICU and general hospital they were not quick to bring in physical therapists, and that really hurt him in the long run. Even if you have to do it, just move his legs a little, and have him pump his feet up and down. We were transferred to an Inpt rehab after about 3 weeks (Our case was not nearly as bad as your son’s, it only hit his thighs before we started plasmapheresis), but 2 days after we got into rehab the new PT found a blood clot in his thigh and we wasted a whole week in rehab to treat that, so it was basically a month before he was even able to get out of bed.
We were in Inpt rehab for about a month. They really did not push him there. It has been a big change since we have been home. His outpatient PT is very direct and pushes him hard. He sweats at therapy, (and complains of course). 🙂 But this is the only way he will get better.
Also, always be concious of how he feels regarding fatigue… it’s ok the push himself, but there’s a point where fatigue kicks in and that will make him go backwards in his therapy. We get a lot of therapy techs working out my Fiance under the direction of the therapists, but they don’t know the difference. Always be vigilant.
Good luck!!
Amy

As you can tell there are a lot of variables with GBS. I awoke one morning with tingling feet and the next afternoon could not walk and was put in CCU, and given IVIG….On vent two days later and in coma for a week….moved from CCU after two weeks to a specialty hospital to wean off the vent…two weeks there and moved to acute rehab for 5 weeks….actually started walking after about 4 days in rehab if 5 or 6 steps a day counts…but of course it does…every day more steps and strength. I was told the sooner you are treated and stop the progression the sooner and faster will be recovery. Depression can do more harm than the GBS…with out the will and desire progress will be slow.
We are all praying for him and for you. Be strong almost every one recovers from this.
AL

Maybe your son needs a piece of…..
God’s Cake
Sometimes we wonder, “What did I do to deserve this?” or “Why did God have to do this to me?” Here is a wonderful explanation! A daughter is telling her Mother how everything is going wrong, she’s failing algebra, her boyfriend broke up with her and her best friend is moving away.

Meanwhile, her Mother is baking a cake and asks her daughter if she would like a snack, and the daughter says, “Absolutely Mom, I love your cake.”

“Here, have some cooking oil,” her Mother offers. “Yuck” says her daughter.

“How about a couple raw eggs?” “Gross, Mom!”

“Would you like some flour then? Or maybe baking soda?” “Mom, those are all yucky!”

To which the mother replies: “Yes, all those things seem bad all by themselves. But when they are put together in the right way, they make a wonderfully delicious cake!

God works the same way. Many times we wonder why He would let us go through such bad and difficult times. But God knows that when He puts these things all in His order, they always work for good! We just have to trust Him and, eventually, they will all make something wonderful!

God is crazy about you. He sends you flowers every spring and a sunrise every morning.

Whenever you want to talk, He’ll listen. He can live anywhere in the universe, and He chose your heart.

Life may not be the party we hoped for, but while we are here we might as well dance.

I hope you’re day is a “piece of cake”.
Al

I was diagnosed with GBS last summer (I was 20). For me, it happened pretty gradually, but not too slowly. The first thing I noticed was my legs beginning to get weak and it was hard for me to go up the stairs in my house. Then I began not only to be weak in the legs but also walked funny. Nothing ever really happened to my arms other than they would tingle a little bit. I was also pretty sick at the time so I thought that I was just weak from having some kind of virus so I just kind of pushed it off. Then about a week later I went to my family doctor’s office, but he didn’t really know what was wrong and just gave me the run around and sent me home and so did the ER. Another week went by and my face began to function weird. When I talked some words were hard to get out right and I couldn’t smile properly. Then the next day I went to eat some cereal and the milk just fell right out of my mouth because I couldn’t control the muscles in my mouth at all. That day was probably the fastest progression day as far as the whole situation. Halfway through the day I could already not shut my eyes, life my eyebrows, or even talk right at all. I couldn’t chew up food or anything. It was aweful. So the next morning I went back to the ER and my mom told them they were not going to send me back home until they figured out what was wrong with me. I couldn’t even walk on my own, and even with help I didn’t do so well. Now that I look back I understand that it’s not a disorder that is seen often nor is it known about to most people, so that is why it was just looked over. I spent that night in the hospital, still not knowing what I had wrong. By that time several doctors had already came to see me and examined me and still no answer. Then they called in Dr. Goldfarb, a neurologist, to come see me and the first thing he said that I had after just checking me for 5 minutes was GBS. Just to make sure he did a lumbare puncture (spinal tap) on me and sure enough he was right. I was so scared because he told me that I could possibly be in the hospital for a long time. I ended up getting the IV treatments for 5 nights and was in the hospital for one week. When I was released, I still couldn’t walk without assistance, but I was way better than when I went in. It took me about 3 months to totally feel like myself again. Now it has been over a year since I was diagnosed with GBS and I still don’t have much flexibility in my legs and sometimes I will get tingles in my arms and legs but other than that, I’m fine!

[QUOTE=TMR’s Mom]Susan, When did your daughter go back to school? My son is planning on attending UCF in august, however, I think we’ll now be looking at Jan. ’07. He did breathe 5 hrs on his own yesterday and so far 2 today! He had 6 treatments of IVIG in which they started on Sat, May 27th. It looks like possibly 1 more week on the vent as long as thing go OK. We are also looking into inpatient rehab. Did your daughter get depresed? My son was handed his HS diploma here at the hospital. So he missed his HS graduation adn grad parties. He is now on a anti depresent, which I hope will help. Any other info on state of mind, things to keep him busy in hosp. and rehab would help. Thanks for responding!
Nancy[/QUOTE]
Hi..I am so sorry I am so late in responding but we have been so busy still settling in and that. My daughter was able to only attend school through online classes. She still can’t return to school physically because she is still unsteady and tires very easily. Also we just learned (which she hid from us) that she still is struggling to write….she can write her name but it is slow and not very neat. But she can type very well so the online classes seem to be a miracle for her until she can get back to school. We might see about a class a day but we have to see her doctor this week to discuss it. My daughter did get very depressed. she is currently on Zoloft for her depression. She still gets a little down here and there…but nothing like she was. She has a boyfriend who picks her up and takes her to the movies and helps get her out a little bit. So that I am sure helps too. We did the same as you when she was in the hospital….watched movies, I read to her alot…her friends made her cards and letters to read. But it was hard because she did not have the use of her hands like she use to. We laughed alot, bring in pictures we took when we went somewhere…just silly things to make her laugh. I am so sorry that it is taking me so long to respond and it is all probably too late. We just went to Alabama to have an EMG done and it was not very good news so trying to keep the upside things here so she don’t see it is a tiring thing. That is why I feel so much for not just the people that go thru the illness but for the people who are caring for them or even just trying to be supportive…it is so hard. I hope and pray after this time he is out and doing ok?? We never went thru the rehab portion of it because they did not have that there. But what we did at home was alot of what they might do there. I even got in on doing things with her and just be goofy…it took the sadness out of it or frustration. I am sorry again for being so late in responding…I really pray everything is much better. Take care