17 yr old just diagnosed this week

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.

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.

Sue

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.

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

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

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.

Caroline
Michigan GBSer

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