17 yr old just diagnosed this week

    • Anonymous
      August 14, 2006 at 8:50 am

      Wow! I am so glad to have found this site and forum. My Pastor’s son was diagnosed 8/10/06 Thursday with Guillain Barre after his spinal tap. He was sick with strep throat the week before. As of last night his toes,feet,legs are paralysed and hands,arms are extremely weak. At 10pm his oxgen levels were way down so they put him on a ventilator. He is aggitated with nerve sensitivity in his hands and feet and having real difficulty sleeping. Also, he is suffering from nightmares.

      It has been uplifting to read your threads/discussions about your experiences with GBS and to see the outcome of so many of you. We all realize that the real work is after the syndrome has taken its course with the physical therapy needed for recovery. He has people all over the world praying for his recovery and healing. At youth group last night one of the kids asked how much he was aware of the pain, conversations, ect…was around him. Our youth pastor said that there will be days he doesn’t remember and small things he will. My question is to those of you who have been through this, “What do you remember of your ICU stay? I have read that it is terrifing being trapped in your body, what are your thoughts on this? besides praying for comfort, healing, ect…what are some specific things we could be praying for that we are unaware of? Some mentioned different kinds of pain…simplified communication (letters…sign language…blinking) and talking softer since your hearing senses are amplified.

      Any comments/info is greatly appreciated,

      Thank you and God bless you all for sharing your experience and sufferings through this affliction,

      Castle Rock, Colorado

    • Anonymous
      August 14, 2006 at 11:58 am

      Nancy, he’s lucky tho have a group of people supporting him. The neurologist should have him on IVIG by now. Every hour delayed is more damage done to his nerves. The pain is hard to describe. Do you ever wake up with a really bad foot cramp? I would describe the pain I felt as being like that, but in every muscle below the hip simultaneously, for DAYS on end. And yes, his feet and legs will be very sensitive to touch. I hope they keep him on some good painkillers. I didn’t sleep for 7 days straight, and really hallucinated from the pain and sleep deprivation. I saw Dr. Elvis stick his head in my door, had Jimmy Buffett doing a live show in the hall, that sort of thing. Demerol didn’t even faze the pain, but morphine worked ok in large doses.

      With IVIG, he should stabilize within a week or two, and then he can start with very mild physical therapy, like having a therapist flex his feet and leg joints. From there, the therapists will gradually try to restore strength in his limbs so he can eventually (weeks? months?) progress to walking in a pool, then with a walker, and then on his own. At age 17, he should recover very quickly.

      I had it at age 31 and I was paralyzed 100% in the legs and 95% in my arms for about a week, but no ventilator. I spent 5 days undiagnosed, then 14 days in ICU, then 14 more in a rehab hospital. After another month of outpatient rehab 3X/week, I had some more IVIG treatments, and was back to work full-time after 2 1/2 months total.

      Just keep praying for him, because prayer WORKS. Without it, it would have taken me a much, much longer to recover. With my family, church, and friends praying for me (and a sharp neurologist), I was diagnosed Labor Day weekend, and was back at work full-time before Christmas.

      Just hang in there with him, and let us know how he’s doing.

    • Anonymous
      August 14, 2006 at 1:24 pm

      Thank you so much rchudgins! Your quick response and account of your illness is very encouraging! Since I found this forum this morning I have been busy contacting our local liasion Ann Brandt. She has a support group for GBS patients here in Colorado. She referred me to the only teenager in her group that has had GBS. I talked to her already today and she was a huge encouragement and had some very helpful information. I will print out your response and bring it with me to the hospital to pass on the information. Again I thank you for your concern and prayers. You have truly been a blessing.

      Any replies welcome to this thread 🙂 we can use all the help we can get with info and past experiences.

      Gods blessings upon all of you,
      Castle Rock, CO

    • Anonymous
      August 14, 2006 at 4:18 pm

      Nancy Gabapentin/Neurontin is good for the nerve pain up to 5400mg fro some people. It does make a person tired but it will take the pain away. Also people the skin is very sensitive he might have a problem with the bed sheet on top of him. Also Yes IVIG should be administered right away. But make sure they don’t put the drip to fast it will make a person real sick and it’s good to have benedril before the infusion. Also some people are allergic to some brands of IVIG but there are other brands of IVIG. There is also Plasma Pharese (spelling?) is good also.


    • Anonymous
      August 14, 2006 at 6:45 pm

      I will pray tonight for his quick healing. GBS has brought faith back into my life, beforehand, I was too busy and made excuses, but now I know the power of prayer. I had GBS in FEbruary, I had 5 plasma exchanges, shortly after the 2nd one, I started turning around.

    • Anonymous
      August 14, 2006 at 7:09 pm

      Hello Nancy,

      I was diagnosed with gbs at the age of 18, at the end of 1985. I was totally paralysed, they even had to tape my eyelids shut for them to close. I had plasmapharesis as I believe IVIG wasnt available then. Everything is frightening, and looking back now, I think that had I known that there were people out there that had gone through the same, and that there was light at the end of the tunnel, would have gone a long way to help. I think my parents would have been encouraged by that as well. In ICU, only my parents, and our minister was allowed in to see me, but my mom would always come in and give me a list of people who had called, their message and the fact that they were praying for me. I didnt realize we actually knew so many people!:p There were days when I was on morphine and didnt remember that much, however, I became too dependent on that, and they took me off the morphine. After that however, I do recall everything (I think 😮 ). I personally feel, that at 17, your pastors son [B]DOES need to know everything that is happening[/B], and everything that is being done to him (I know that to protect him maybe his parents will not want to do this, but he may be slightly less anxious knowing than not). For instance, If they are giving him a shot, the nurse or whoever should tell him what and why it is being done. They need to talk to him while doing any proceedure (about what is going on) as that most definitely helped me. The not knowing what they are doing, or what is going on, is one of the scariest things.

      In my ICU room, I had a beautiful big window, almost the size of the outside wall. I would look at the tree tops, and my favorite was looking at the clouds and making pictures. Looking up at the sky and clouds made me feel so very close to the Lord. This woulld also take my mind off all the other stuff going on around me, and it helped out tremendously.

      Also, just wanted to say that nights were some of the worst times for me because I was scared something would happen and there wouldnt be enough staff, having said that, when something did happen, everything seemed to happen far quicker than during the day. If at all possible, if you could find out how he feels at night, and find out if someone could be with him sometimes after things quieten down until about midnight. That is just a thought, and he may not even want that.

      My thoughts and prayers are for him and his family.
      God Bless

    • Anonymous
      August 14, 2006 at 7:43 pm

      I am so truly thankful for your replies. You are all such a wonderful encouragement in a scary time. I am busy gathering all I can to pass on to the family. They are aware of how God is directing me and I feel confident that this site can also be to His glory. Thank you all for sharing your experiences good and bad.

      Suewatters1 -Thank you for your pain relief medicine information. I’m sure the family is getting used to some of these medicine names and I will pass along this information so they can talk to their doctors about what Peter is being given or will be getting.

      Cara922- Your prayers are greatly appreciated and needed. Thank you for your compassionate heart. Please pray also for Peters family for strength and endurance through this difficult time.

      Ali- your honest description of your experience is so encouraging and informative. Their are so many little things that only those who have experienced GBS can tell us to look for or ask Peter. I am so thankful for the replies to this forum you are truly a blessing.

      God bless you all and continued healing,
      Castle Rock, CO

      PS…If you think of anything else that I can share with the family please post 🙂

    • Anonymous
      August 14, 2006 at 11:10 pm

      hi Nancy: I was not on a vent but remember the nighttime and the nightmares. Recent research shows that many people in the first week have disturbed dream experiences so night can be a very bad time. Having someone there would be great-i wished I had because I was out of my mind most nights with pain and delusions. I am also in Colorado, in Littleton, and if he or anyone should want someone else to talk with Ann has my number and my email address, or you can ask for it here. Best Luck, Jeff

    • Anonymous
      August 14, 2006 at 11:55 pm

      I think what everyone said is right on. Know also that he will need a lot of rest and sleep. GBS makes you very tired. Sometimes after ICU when I was in a regular hospital to recover I just wanted to sleep and not visit. It took a lot out of me. As you do get better though you appreciate more visitors. It seemed that mine slowed down toward the end. I was in the hospital over 100 days. I was paralyzed but not ventilated. I remember that in ICU I wished that they would not have the lights on all the time. Remember even though his body doesn’t work that his mind does. The hardest think for me was dreaming I could move and then not being able to. Also the pain comes because your nerve endings are no longer covered by the mylen sheath which has been eaten away so any touching is painful. I don’t always think the ICU staff realizes what GBS is all about. I remember they thought I would enjoy a bath and it wasn’t comforting at all. The first two weeks are tough. Also he will have to learn to use everything all over again and that is work. Physical therapy will take all he has and having visitors is draining unless they are willing just to sit and not want him to engage. I did have people to feed me for all my meals once I could eat. He will start with just baby food like meals. Also remember that his parents will find this very taxing. Any help that can be given the family with bringing them meals, helping sit with him, and cleaning their house will be appreciated I’m sure. It is a tiring time for the patient as well as the family. He is young so hopefully he will recover faster than some of us have but GBS stands for Getting Better Slowly.

      Michigan GBSer

    • Anonymous
      August 15, 2006 at 9:14 am

      Last night I put a folder together for the family with:
      > contacts
      > print out of the replies to this discussion,
      > website addresses
      > print outs of encouraging GBS patient stories
      > Email correspondence with some GBS patients

      Yesterday Ann Brandt liason for CO put me in touch with the only teenager she had on her support group list. She was 15yrs old when she got GBS and now is 17. What a delight to talk to! Everyone has been so supportive and we are all strangers-link together with this frighting illness. It’s been such a wonderful surprise! God bless you all! Also, Mike Sutton the head basketball coach at Tennessee Tech recently had GBS. He has offered to talk to the family.

      Jeff- yesterday Ann said she was going to call me back with a Littleton contact. If you don’t mind I would love to have your name and number to pass along to Pastor Herb. Someone that is close by and could possible come visit him. Peter is at the new hospital SkyRidge Medical Center in Lone Tree. Are you anywhere near that?

      Thank you all again for your replies,
      God bless you always and continued healing,
      Castle Rock, CO

    • Anonymous
      August 15, 2006 at 11:08 am

      Hi Nancy: I believe I am person in Littleton Ann mentioned. I am only about 15 minutes from the hospital so would be glad to come if any of the family wished. My home phone is 303-979-9192 and my cell is 303-246-5158. I’ll be happy to help in any way I can. Jeff

    • Anonymous
      August 15, 2006 at 11:19 am

      Jeff- Thank you so much! I have put you on the contact list and printed out this reply to add to the folder I have put together. Herb (the dad) will be getting this folder today. God bless you for your willingness to help someone in their time of need.

      Gods blessings upon you,
      Castle Rock, CO

    • Anonymous
      August 15, 2006 at 8:53 pm

      Update on Peter

      He is running a fever and was able to communicate to doctors that his eyes were itchy…he has pink eye. Tomorrow is a big day the doctors will be doing an neurological assessment, they are removing the breathing tube to see how he does on his own and they will be starting plasmapheresis.

      Continue to pray for Peter and his family. If you have any thoughts or experiences you’d like to share about some of the things that are scheduled for tomorrow please post replies. I am particularly interested in the plasmapheresis treatment…is there any pain involved, side effects ect.

      God bless and thank you for your compassion and help,
      Castle Rock, CO

    • Anonymous
      August 16, 2006 at 12:08 pm

      I see that there are hackers on this forum and disappointment because of that. Please don’t let it hinder the good work you are doing with this site. There are always obstacles in the path of good works, hurdles we must jump over.

      If you have any replies to Peter’s plasma treatment today any encouragment or experiences would be greatly appreciated.

      God bless your work here,