What to expect

    • Anonymous
      November 13, 2008 at 3:14 pm

      Hello everyone,

      My wife and I are very new to GBS. Our daughter was diagnosed 25 days ago and is still in the I.C.U she just came off of the vent on Sunday after 2weeks on it.There are so many questions that I have but I will start with my main one.

      Sonce coming off the vent and even a few days before her voice has sounded for a better word very child like.I’m wondering if this normal will it go away.Everything that I have read says that there are no known cases of any nuerilogical(sp) damage,but I will admit we are scared.

      Any insight on what we can expect other than PT (which she is excited for)would be greatly appreciated.Thank-you in advance.

    • November 13, 2008 at 3:35 pm

      Nice to meet you!
      My son was 10 when dx and later re-dx with cidp at age 11. I have more experience w/cidp, gbs experience is limited. About the pt, do not over do it, it causes fatigue and pain. Obviously some pt is warranted. At a symposium for gbs/cidp that was just attended, one of the Dr.s said it is not no pain no gain. it is pain, no brain. Everyone is different regarding recovery,pain, medicines. But coming on the site will give you an opportunity to ask many here. Good luck.
      Dawn Kevies mom

    • Anonymous
      November 13, 2008 at 6:14 pm

      Sometimes the vocal cords are irritated by the tube in the throat to allow the breathing machine to breathe for her and this makes the voice higher or more whispery. this should improve, especially since she was only on the vent for two weeks. (I know that two weeks seems an eternity, but a lot of people are on a lot longer). You do not way how old your daughter is, but the other thing that can happen to teens and young adults is that you get so scared that you act younger and need mom and dad time even if someone had been “all grown up” before. This illness is scarey. Being in the ICU is scarey. I think the thing that I wanted most right after I got sick was my mom and I am totally grey haired from lots of life experiences under my belt (note, I did not say old age:D ).

      The other advice for you is to hold tight to hope. We tell people that GBS means “getting better slowly”. It will take time, but she has already made a big step. Keep encouraging her and supporting her. Write to the Foundation and get the information booklet. It will help a lot. As Dawn says, make sure that they go slow with the PT as doing too much with nerves and muscles that do not talk well to each other any more can cause muscle damage and pain. When she gets pretty tired or sore, she needs to stop. It is better to do little bits often than try to do much at once. By little bits, some people can only do 3 minutes of activity at the beginning. One is back to baby steps.
      WithHope for a cure of these diseases

    • Anonymous
      November 14, 2008 at 4:28 am

      Welcome to the forum WolfDolphin. I’m sorry that your daughter got GBS. Did she have the Miller Fisher Variant? If yes, the nerves of the throat may have been affected and it make take time for them to recover. Talk to her neurologist about this. Since her voice is not ‘normal’ I would suggest she is seen by an Ear Nose Throat specialist, they will inspect her vocal cords and throat with a camera . She may be referred to Speach & Language therapy. Sometimes a short period of voice therapy does the job. There is a very good website about voice problems :[url]www.voicedoctor.net[/url]

      I’ve done a lot of research on the net and many people who were intubated didn’t get any damage to their vocal cords but unfortunately in my case it seems that my vocal cords are scarred and one is not closing properly (I was intubated 3 times in one week) To compensate for this problem I’m straining my neck and throat muscles a lot so that the vocal cords can close (this condition is called severe muscle dysphonia). I’m due to have another test and possibly a collagen injection to make my cord bigger and stronger. I don’t want to scare you, and I hope that this does not happen to your daughter, my voice does not sound childlike like, it sounds breathy, low and I don’t have any voice stamina.

      I wish your daughter a speedy recovery

    • Anonymous
      November 14, 2008 at 3:03 pm

      Thank-you for the welcome.I did forget to mention that before she went on the vent her voice started sounding different probably 3 days before.I’m hoping that it is just something that will pass.

      As for the Miller Fisher variant I’m not sure if she has that or not,I did notice that for awhile when she tried to sleep her eyes would not close?

      As for the PT thanks for the heads up on that when her legs hurt she says it makes them feel better,as for now they are going light mainly just stretching them out.

      I have another question what exactly is the difference between CIPD and GBS?Also what are the signs of the Miller Fisher variant.

      I do apologize for all the question but I’m just trying to understand and be there to answer questions for my daughter and also to make sure I;m asking the doctors the wright questions.

    • Anonymous
      November 15, 2008 at 1:52 pm

      Hi! I am new to GBS and was diagnosed in September this year. It is so awesome that you are there for your daughter, as my parents were for me. I am 37 years old, but my parents were really the ones that came every day and that I looked to for encouragement, support, laughs, etc. (besides my husband). They really helped me get better and helped navigate the whole rehabilitation process.

      I went to an inpatient rehabilitation institute after my discharge from the Hospital of the University of Pennsylvania. I went to one that deals the GBS patients frequently. This was so important, at least for me and my recovery. The therapists were knowledgable and knew how much to and how much not to push me- My PT was AMAZING and did sugarcoat anything or hold my hand. Yes, it was hard and I was sore, and scared to walk because of lack of sensation in my legs/feet, but she made it happen for me. My strength is now about 80% and my sensation is better than it was

      I did not speak well either-bc my right side of my face/mouth was paralyzed and my upper lip did not move. I also saw a speech therapist, and occupational therapist for my hands and a psychologist (briefly) just bc it was as tramautic situation and the rehab hospital required it.

      Good luck to your daughter and your family- kudos for you for helping her in what has probably been the worst time in her life, bc it was for me too. P.S. HOw old is your daughter?

      Take Care, Tracy

    • Anonymous
      November 15, 2008 at 2:42 pm

      Our daughter is 17. I talked with her doctor today and right now they are also treating her for a staph infection.She is finishing up her second round of plasmapharisis and she already had two rounds of IVIG.I can only imagine what she is feeling.Any insight on what she is going through would be helpful.She is in pain right now mainly her right foot in her toes and her left leg,I keep telling her that these are her nerves re-firing but that the pain will go away.The currently have have her on, Dilantia(sp),Lyrica(sp) and in between hydrocodene for the pain.If anyone has a way to kind of help ease her throught the pain I would greatly appreciate it.Right now I just keep telling her to breathe through the pain and of course she gives me the look:eek:

      I just want to thank everyone for there advice and input.

    • Anonymous
      November 15, 2008 at 8:47 pm

      hey there welcome,
      I am very sorry to hear that your daughter has gotten GBS. I had GBS in march and spent in a month in the hospital ICU. I turned 18 in the hospital. I don’t know the age of your daughter but it sucks either way. When I got out of the hospital I had Occupational therapy, Physical therapy, both 3x a week. I was also diagnosed with PTSD so I went to a psychologist. I think that is probably something you might want to look into. There is alot of stigma about psych’s but it really helped me. Also if there is a goal, or something to look ofrward too, for me it was going to my senior prom, it really helped me get better. Positive reienforcement is also a great tool. I felt so acomplished, to do anything, pick up a fork, hold a cup, and it helped me emotionally to know that my parents were proud of me too. expect baby steps but don’t discourage anything, i went from being bedridden to walking with a cane in a week, my PT/OT people thought i was nuts. The therapy, and medications are daunting, but if there is encouragment and love then things are bareable.
      I hope this helps. If your daughter needs someone to talk to my email address is [email]britaneystorms@yahoo.com[/email] I know I would have been a little less down sometimes if i had someone who went through what I went through.

      As a final note, it’s a long process that seems like it will never get better, but things do with time. I got better with time, and now just a few months later I am going to college and have only the scars left over as a reminder. I hope this helps and that she gets better soon.

      Best hopes,

    • Anonymous
      November 15, 2008 at 8:54 pm

      I just read something more and had a little more to offer. I was in a full body paralasis for two and half weeks and getting better was the most painful part. I suggest that you asak for your daughter to be put on morphine, yes it is a strong drug, but it was the only medication that took the pain away, or well took the edge off. talk to her about things to look forward too, prom, graduation, college. things to rasie her spirits. Also try some breathing techniques, kind of like what pregnant women do when giving birth. I hope this helps please don’t hesitat to send me an email.

    • November 15, 2008 at 9:20 pm

      Dear Wolfdolphin,
      My son is now 11, 10 when dx. In the beginning he had extreme pain. Until recently he has been pretty pain free with the exception of the pinches he gets daily. his legs and ankles do still bother him, but lateley more so. I am wondering if tapering his ivig may be the cause or his overactivity. If you would like honest truth read on, otherwise decline. I would like to share our experiences so that maybe you can have a heads up on how to divert things before they happen. I am not going to lie, in the begining, IT WAS TOUGH! The sooner I got over the denial and accepted, it was a bit easier, there was no debating, only moving forward positiveley. Anger sets in and stays a while and then goes away and pops back up occasionally. me personally, I had difficulty with family and friends, they really did not and still do not get it. Especially now, since things look so normal on the outside. I was able to come here and get great advice medically and huge emotional support. I know you asked about your daughter, but I made the mistake of not worrying at all about me and it caused me a near break down. Once I conquered those issues of denial anger, dessertion of friends and family, I got it back together and was more positive and hopeful. For the most part I am, but I still get bumps in the road.
      About the pain, Lyrica, neurotnin are for the most part what people on the site use. The vicodin ( I am pretty sure that is the same family as hydrocodeine but hydro has a little extra for inflamation) may cause constipation as it did for Kevin. Kevin’s bowels were already affected, so that just compounded the problem. Neurotnin is used by some on the site with doses as high as 3600 mg a day. Perhaps her dosage could be re-evaluated.

      Something else to seriously consider as the kind sounding young adult named Britaney said before me, a counselor/psychologist might be a good idea, at least while she is in the hospital. Kevin may have to see one soon, we are trying some new coping techniques by ourselves, but I cannot let things get too far away from us. School and the anxiety he gets when missing work for treatments is our hurdle we cannot get over. Contact your school, ask for a tutor to be set up. I realize all districts/states are different, but our school actually sent the tutor to the hospital in the beginning. We now get her one hour for every day we miss due to treatment.
      Many on the site always say that they enjoyed when their families brought familiar things from home, maybe set it up like her room from home. I remember one lady said all she wanted was her legs shaved.

      On the positive side, it WILL get better, but it is slow. I really can tell you Kevin is an entireley different person and he is more amazing and compassionate than ever, his weaknesses made him stronger as an individual 20 times over. Kevin for the most part plays like a regular psycho wild man 11y/o boy. He might not be the fastest runner, but he is not the slowest, probably can only shoot 60/40 in basketball (still pitches a mean ball though!) But he really is the kid that shines the brightest. Your daughter will get there and you will make it too. Patience is probably the best advice I can offer to both of you as well as understanding from both views. Also, don’t be afraid to ask doctors questions and demand answers. Best wishes on this journey and you will make it through the other side. I would highly encourage your daughter when she is able and willing to take Britanny up on her very generous offer of communicating. There is also a young gentleman that started a facebook page for young adults w/gbs/cidp. I could get that info if you like.
      Love and understanding is sent your way.
      Dawn Kevies mom

    • Anonymous
      November 20, 2008 at 9:48 pm

      Brittaney and Dawn Kevies mom

      Thank-you for the support.Brittaney I’ll give my daughter your e-mail when she gets home.As for the Morphine she already has a fentenal patch and was on it with an IV unfortunately it didn’t really do anything.It’s kind of funny that you mention the psychologist because one came in the other day to talk to her,her doctor was worried she may need anti-depressants but after talking with her he said that she was actually in good spirits and was just someone in pain.My wife and I have said that after this is all over that we would get both my daughter and her little sister in to talk to someone because it has been tramatic for both.The newest pain my daughter is experiencing right now is a shooting pain like electric schocks going from her feet all the way up her spine to the base of her skull.Did you ever experience anything like this,because I’m wondereing if this is normal or not:confused:

      Dawn Kevies mom,
      I completly understand what you mean about friends and family just don’t get it.We had friends at the start of all this that said whatever you need we are there,that was until they found out this was going to be long tough road,and then you truly find out who your friends are.Thank-you for sharing your story it was pretty much what we feel like and it’s nice to know that someone does understand.:)

    • Anonymous
      November 21, 2008 at 7:04 am

      Sorry your daughter has to go through this. It would be good for your daughter if the psychologist could continue to visit her on a regular basis while she is in the hospital. As for the electric shocks, it is normal and many on the forums have talked of them. In my case, they were in the lower spine and went to the upper back. Those went away within a couple of months but then got them on the inside of the lower legs. The best way I can describe them is to picture the shape of a lightning bolt flashing through an area on your body and giving you a quick shock. My shocks have gotten milder over time.
      Prayers for your daughter and family.

    • Anonymous
      November 21, 2008 at 3:51 pm

      No one really understands GBS until they have a loved one, especially a child, go through this awful ordeal. My son was diagnosed in Jan 2008 at age eighteen with GBS. We had alot of support from most of our family and our closest friends… but certainly not everyone. What surprised us the most were the random acts of kindness from people we really did not know very well. At the same time there were folks we thought we could really count on who let us down. I was frustrated by people who didn’t understand the illness and made incorrect assumptions or acted as though this was someting that our son could conquer “if he put his mind to it.” I even had a Nurse’s Aide in the Rehab tell him she understood how he felt because she had experienced a Knee replacement- WHAT???:eek: Are you kidding me?!

      I needed family and friends to just listen, sit with us and help hold together the day to day things we needed- like bringing us something to eat in the PICU waiting room. I learned quickly to politely ask for what would help and to waste no energy on the people who did not come through.
      I don’t know what your beliefs are, but for us, prayer and a strong faith in God’s healing grace are the most important things that have kept my husband and I from coming unglued through all this.
      Please know you, your daughter and your family will be in my prayers. It is a long, hard road to recovery but she will get there especially with your loving support. 🙂

      As for the pain, my son had horrific neuropathic pain and would say that it was so severe and different from anything he ever experienced he couldn’t really describe it. It was most painful in his arms and hands at first and then became unbearable in his legs and his feet. Even the bedsheets would hurt. He also had pain due to the ventilator tubes in his throat, the surgery to put in the Trach, muscles that ached when they were being used for the first time in weeks, soreness from being lifted in and out of bed and in and out of his wheelchair. He took all kinds of meds…every pain med on the list… unfortunately nothing was the perfect answer. We did try to make sure the doctors understood all the different kinds of pain he was having since each med really is designed for specific types of pain issues instead of letting them make a quick assumption and moving on the next case. The good news is that the pain it has gotten better and I guess his pain threshhold is pretty high now too. We did gentle stretching at first- as much as he could tolerate. Later when he could sit more upright, he wanted lots of pillows under his legs and knees. At one point he had 24 pillows in the bed.:D

      Keeping him encouraged and focused helped too. We kept a journal daily (eventually it became two journals) and he has gone back now that he is better so he could re-visit the days he was unconscious. We also made posters for his walls with photos of him healthy so the staff could see who he really is as opposed to just the “GBS patient.” I think it also helped them relate to him personally and kept him reminded of getting back home to his own life. We also made a chart he could see that listed every development he made- no matter how small it was- it was progress that he needed to see.

      Please forgive my rambling but maybe some of this helps. I think it’s hard enough being a parent of a teenager…but a parent of a teenager with GBS, well…. Please give your daughter my best wishes for her recovery. Please let her know that there are other young people out here who have gone throgh this and made a recovery.

    • Anonymous
      November 29, 2008 at 3:45 pm

      Thank -you for your story I don’t ever feel like anyone is rambling and I actually find it helpful in a way because it doesn’t make us feel so alone.Thanksgiving was real tough for us this year,and now we feel like we are just getting the run around with doctors,they answer one quest5ion and then we have 10 more,does it ever end?Our daughter had her second round of nerve conductive tests today because they still can’t figure out why her right foot is in so much pain.Hopefully we can get some answers soon.

      Thank-you so much to everyone for being there to listen.

    • Anonymous
      November 30, 2008 at 1:28 pm


      I’m in my fourth month. I was lucky–I wasn’t on a ventilator. However, I had some tingling in my mouth in the first weeks and my voice and especially my laugh changed. I consider that the least of my concerns. I can be perfectly happy with a different laugh and voice if I can walk.

    • Anonymous
      December 1, 2008 at 7:09 am

      🙂 Wolfdolphin:

      Sorry to hear about your daughter.. Unfortunately, pain seems to go with this gbs stuff… I had severe back pain, numbness, and tingling, headaches, bowel problems for a long time after, and a host of other things.. In time the constant pain went away, (although, I still get intermittent back pain)… I took pain meds for the week I was in the hospital, and perhaps a couple weeks after.. Too bad she has to have more ncv’s…

      On the bright side, it sounds like she is well on her way to recovery, and being young I’m sure this will be a distant memory in time.. A year ago, this week I wasn’t walking without walker/wheelchair.. Heck, now I pretty much am doing everything pre gbs/cidp, although I get flare’s… Guess what I’m saying she’s gonna get thru this..

      Take Care and take it slow and day by day….\

      P>S> I see you had asked re: PT.. I had Physical and Occupational therapy for about 6 months.. I think it really helped to motivate me, and keep postive more than anything.. , and appreciate little/bit gains.. My Physical therapist has MS, so she understood fatigue and limits, which is huge… I went for 3 days/week, even some inpatient….

    • Anonymous
      December 8, 2008 at 10:15 pm

      Well alot has happened since I last posted.My daughter has been transferred to Arkansas Children’s Hospital in Little,Rock. Within the first 2 days she accomplished more than she did at the other hospital in 6 1/2 weeks.She has a team of people from doctors all the way down to a child life coach and we have a conference every other week with them so that everybody is on the same page.The only downside to this transfer is that my wife and I cannot be there Mon,Tues or Wed because we have to work and she has a little sister.So we have alot of guilt on that.Her doctor thinks she may have RSD which they are treating with morphine.They have got her pain under control at the moment.Before she was on Dilidid every 6 hours not mention lyrica and Hydro,so she was almost a zombie and really wanted to sleep,but now she doesn’t have as much pain and only takes the morphine at night when her pain is the worse.So hopefully she is now on the road to recovery.

    • Anonymous
      December 9, 2008 at 7:25 am

      That is great news.
      Please keep us posted on her progress as she continues to recover.
      Take care

    • Anonymous
      December 9, 2008 at 10:06 am

      This is exciting news… I know that you are all relieved to be in a more active phase of her recovery. The work ahead won’t be easy but she will, no doubt, be making lots of progress. It is so hard to balance the needs of the rest of the family and jobs with your daughter’s needs. Family support is what my son says got him through the rough days. We too had to spend more time at home once he moved to the Rehab facility…it wasn’t an easy decision to make. I guess knowing that he was more stable medically was the only way we felt comfortable backing off. Have you thought of trying to work out a schedule of grandparents, other relatives or friends to be with her on the days you can’t be there?

    • Anonymous
      December 9, 2008 at 2:27 pm

      Sorry to hear about your daughter having to go through the extreme pain. My son had GBS 2 weeks after he turned 5. He was in so much pain that at a stage we couldn’t put any clothes on him. We couldn’t touch him at all without hurting him. It was so difficult to handle him – he cried when we picked him up to transport him or to move him from one place to another. He described his pain as crabs in his flesh or as somebody stabbing him with a knife or another was his flesh turning into blood. His pain started going away over a period of time till he had little pain left in his feet. Took about 3 months for the pain to disappear completely. The pain made everything so much more difficult. How I longed to just hold my son to comfort him, but I couldn’t touch him. Good news is it will go away eventually.
      Good luck and God bless!

    • Anonymous
      January 8, 2009 at 12:57 pm

      So much to report since last time I posted.Our daughter is completely off narcotics for pain they switched her over to Nerotin(sp) 1200mg and that seems to be keeping her pain under control.

      On the flipside of that the the Friday before New Years my daughter called to tell me that during her PT her legs went numb as she put it kind of like when this all started well sure enough she had a minor relapse she regained feeling in her legs after a few hours.They did an MRI on her spine with contrast and without and down her spinal cord and in between her vertabre’s they are black where they should be white.The neurologist ordered another round of IVIG which has helped but this time she had some side affects that she didn’t have before,but all in all she is starting to get better.She was fitted for leg braces to help support her knees.She is doing good with her physcologist and will probably keep seeing one when she gets home,she has been having bad flashbacks about when she was on the vent and now next to her room there is a boy who is on a vent and everytime it alarms it really freaks her out.

      I just want to thank everyone and this board for just listening.


    • Anonymous
      January 9, 2009 at 10:08 am

      Hi WolfDolphin! I am glad to hear she is starting to show some improvements and will keep her in my thoughts and prayers. She’s been through a very scary trauma and will have a time before she starts to feel comfortable again. That vent is a scary thing. GBS is very scary! I hope we get to meet your daughter in here on the Website. I think her coming in here and seeing that she is not alone will help her in many ways. She has fears right now but once she hears many in here, it will give her much hope to getting well again! Good luck and my prayers continue for her!
      Linda H

    • Anonymous
      January 9, 2009 at 12:50 pm

      Linda H

      Thank-you very much I have sent her a link to this board and when she gets out she told me that she will sign up.

      I have great news today,last night when we went to see our daughter,we went into her room and she was all excited and said I have to show you guys something,she asked me to come over by her and hold her arms as she preceeded to stand and take a couple of steps.Her braces that she got seem to have helped,along with the last round of IVIG.I told her that I forgot how tall she is and it was nice to actually get a real hug from her.I couldn’t have been prouder of her.:D

    • Anonymous
      January 9, 2009 at 1:52 pm

      Great news!!!
      Hopefully her fears will become less of a memory as time goes by and the more she improves.
      You’ll be getting more of those hugs from her.
      I’m happy for you.

    • Anonymous
      January 9, 2009 at 8:07 pm

      That is great news! I am happy for you and your family. However, I will keep all of you in my thoughts too. It is long and scary road for everyone involved….stay strong! This board is so helpful, and it will be great to have your daughter on here too! Best wishes to all of you, and please keep us posted.

    • Anonymous
      January 10, 2009 at 12:35 am

      So glad she is doing better. Each day will bring new surprises. Celebrate the little accomplishments and let her know we are all cheering for her.

    • Anonymous
      January 10, 2009 at 4:59 am

      glad to hear that your daughter is better, it must have been wonderful to see her stand up and hug her.
      best wishes to you, your daughter and all your loved ones for the future

    • Anonymous
      January 22, 2009 at 1:36 pm

      Well it is official our daughter will be coming home on Friday after 96 days in the hospital:D She will have a walker and wheelchair along with PT/OT 3-5 days a week but this is a huge step in the right direction.We just wanted to share our good news with everyone,and hopefully within the next week my daughter will introduce herself and maybe be able to help out.

      Thank-you so much to everyone for there help and being there to listen to our rants and answer questions,this message board is truly godsent.

    • Anonymous
      January 22, 2009 at 1:44 pm

      Hi Wolfdolphin

      I’ve been following your daughter’s story on the forum. I’m so happy for her and you that she’s finally coming home. I wish her all the best for her recovery.

      all the best

    • Anonymous
      January 22, 2009 at 2:29 pm

      Thank-you MDM I’m hoping now that she is home I can somehow help others who come to the board and are seeking advice or have questions it’s the least I can do.

    • Anonymous
      January 22, 2009 at 8:07 pm

      congratulations..she will feel so much better once she is at home..enjoy your little girl