Introduction…hope I did this correct using new thread? New to forum usuage, sorry

Hi Grams!
Had your grandaughter had vaccines from the service lateley? Could be a possibility! Good luck.
Dawn Kevies mom

Dear Gram,
This is a very difficult process to go through and may be a long road ahead. It must be tough to not be able to be there! My grandson started with the diagnosis of GBS and we thought we were very fortunate the is did’nt progress beyond his legs. After a great response to IVIG and Solumedrol we were delighted only to have a decline after about 2 weeks. His diagnosis was changed to CIDP a chronic condition. I am very close to my grandkids also and it would be awful to not be there! Learn all you can but also know that this is a very unpredictable illness that takes it’s own path. Do you know any of the treatments that they are using? My thoughts and prayers will be with you, you are not in this alone.

Oh Grams, I am [I]so sorry![/I] I am glad that you found our “family”. We will be so glad to help wherever we can.

You will have a difficult time getting records as the military doesn’t want you to make a connection between their requirements and your granddaughter’s illness. And they don’t want to have to compensate ~ which the government has a program in place for when it can be proven that an individual was healthy before the vaccinations. It will take some work on your part but will be worth the time and effort to prove it. Your granddaughter may need some long-term care and it can be very costly. Just take it one step at a time and you will get thru it.

I will keep your granddaughter in my prayer thoughts as well as you and the rest of your family. It will take the collective energy of those who love her to help her pull thru. Remember, she is young and strong so that is definitely in her favor.

Keep coming back with your questions. There is always someone who knows an answer or can steer you in the right direction. Be sure to have the Foundation send to you the “info packet” immediately. And please let us know how she is doing whenever you can.

Just because she is fully paralyzed and on a respirator doesn’t mean she won’t wake-up and be strong again! It is highly probable that she can hear “everything” so stay positive with encouraging words. Talk about what is happening in your lives and her friends lives and the world. It may help to keep her current and not feeling so lost. If she “thrashes around” or her face looks pained, she may be feeling a lot of pain in many places. I couldn’t even have a sheet touch my legs. Oh how that hurt! Narcotics won’t ease it much; she needs an Rx called Neurontin which is specifically for nerve pain. There are doctors that don’t know that. Some of our people here have had upwards of 3800mg/day in divided doses. It’s not a narcotic so she won’t become addicted to it. Soon others will be around to help you with more info.

Thanks for being such a great grandma. She will “really” need you now! Big hugs to every one 🙂

In July 2006 i was in the same position as your daughter – i was completely paralysed and on a ventilator. They put me in an induced coma for 5 days. Those days were the worst for my family as i can only imagine how helpless i looked. But they only had the information the doctors gave them, they didnt have the benfit of this forum and the support of others who have been through what you are going through now. I can honestly say that i knew the whole time that i would recover, it was just a matter of how long it would take. You have to stress to your granddaughter that people do recover from GBS, it may be a long slow process but the hardest part is to stay positive.

Looking back, at 1 week i had just come out of the coma, was on the vent and battling pneumonia. Just like your granddaughter. My eyes were shut and the only method of communication was moving my big toe once for no and twice for yes. Well it seemed like forever at the time but by week 7 i walked out of hospital completely on my own, which is really no time at all considering where i had come from.
By week 2 i was extubated and had a trachy inserted. They started weaning me off the vent by putting me on humidified oxygen for short periods of time which were gradually increased. I had physio twice a day to keep my muscles moving. I gained enough movement in my hand to hold a pen and was able to write messages to my family.
Week 3 they were going to change to a long term trachy that could be taken out and cleaned but i developed an infection so they had to leave the original one in a bit longer. By the time the infection healed i was breathing on my own anyway. Once my swallowing was strong enough they allowed me start on soft food.
Week 4. I was able to talk again for the first time in almost a month with the cuff down on the trachy. At the end of 4 weeks i was discharged from ICU. I had use of my arms and some movement in my legs but wasnt able to stand even with a hoist.
Week 5 The first day on the ward the nurses wanted to take me for a shower. I told them i had to be hoisted out of bed into a chair. They got a standing hoist. I told them it was no use we had tried that in ICU. They asked me to give it a go anyway and i stood for the first time in over a month. Each day i progressed a bit further until i could get from the bed to a walker by myself then i was zipping up and down the halls with a walker. If you had told me before hand that i would have been happy using a walker like an old person i wouldnt have believed you but i can honestly say at that stage if i didnt improve any more i would have been happy with my lot.
My infection cleared enough for the trachy to be removed and i was transferred back to my lcoal hospital for rehab.
Week 6 Started inpatient rehab barely able to walk more than a few meteres with a walker. Was expected to shower and dress myself (including shoes!) for rehab. By the end of week 7 i was walking obstacle courses, up and down hills etc and was allowed home.

Sorry, didnt mean to drag this out so long but wanted to let you know that things may seem dire now, god knows i was in the same position, but there is hope. I was back at work in 6 months and next month it will be my 2 year anniversary. We hope to see your grandaughter here in the not too distant future sharing her story!

Please hang in there.. there will be better days ahead. My son who is 18 years old and very healthy was struck very suddenly with GBS on January 14, 2008. He too was completely paralyzed and ended up with a tracheostomy and a gastronomy tube. He battled pneumonia for several weeks. Those first weeks were so discouraging and scary. He was in an ICU for 5 1/2 weeks before being transferred to a Rehab facility and staying there for over 10 weeks. He was not able to speak for four weeks, was not able to lift his arms until mid March and took his first steps on April 4th. The wonderful news is that he was determined to get better and has made miraculous progress. He worked with some wonderful physical and occupational therapists and was able to walk out of Rehab with a cane on May 2nd. While in Rehab and after returning home he continued to work on his school assignments and was able to finish his senior year of high school. He graduated Saturday with his class and walked with his class in the procession and across the stage without any help at all! He is still in therapy on an outpatient basis and has a ways to go but he will get there slowly. He says that the support of his family is what has gotten him through this.

To answer your question about GBS/CIDP it just takes time and the course of the illness to tell the difference. Josh had a good response and then had a relapse. He had a slower onset then most GBS but time is the factor that tells. They both have protien on the spinal fluid, slowed nerve contuction test ect.
Please give us a update, I hope all is going well.

Hi Grams, Welcome to The Family. Keep asking the questions, or just vent when you need to. It seems that it isn’t an all of a sudden thing that your granddaughter is dealing with. GBS is usually a rapid onset, symetrical onset syndrome. It sounds to me like your granddaughter has been having the symptoms for quite awhile prior to paralysis, with assymetrical onset. With that slow of an onset to paralysis, don’t be surprised if her dx is changed to cidp. It is very important to keep her positive and the environment around her as positive as possible. She will recover, it will be slow and can’t be rushed. She knows you would be there holding her hand if you could be. If it would take stress off of you, is there a way to request a chance to go visit her for a couple days? You need to take care of yourself also, mentally and physically. It sounds like you and your granddaughter have a great relationship, thats wonderful.:) Please take care.

I have a niece and her husband down at Ft. Hood. He actually is over in iraq currently.

Grams, Please don’t apologize, that is what we are here for, to help when we can and however we can. They shouldn’t be doing plasma exchange right after the ivig treatment-that just washes out all the ivig, no point in it soo soon after ivig. It will take the ivig a short time to work, it helps stop the attack on the myelin sheath-the coating on the nerves. It may take more than one treatment to see results. Its either ivig or pp, and if it is both than it should have been pp first to remove the bad antibodies that are attacking, than use the ivig to top off the job. She can hear, she just might not be able to respond. its kinda like being locked in a room and not being able to communicate with someone on the otherside of the wall.
As for the bowels not working it normal, the body shuts down what is not necessary to focus all energy to what is necessary to keep the body going–the heart and brain are the important things-top of the list first to get the oxygen etc. the nerves also control the digestive tract, they are under attack along with all the other nerves, so its normal to not have bowel movements for a time until the body says ok lets start up the rest of the body, it may take a while to get everything up to speed and back to working order. meds will also slow down the digestive process, narcotics have that warning. She should be on neurontin for nerve pain vs narcotics that don’t work well and cause more breathing problems. Staph infections are hard to controll, just make sure nurses clean their hands everytime they enter the room and use gloves at all times when touch anything that touches your granddaughter. mrsa is a big problem in hospitals. she can be tested for that while they are testing what type of infection she has. No there aren’t any alternative treatments for gbs other than ivig or pp. We all wish there were. Please know Your Grandbaby is in My Thoughts and Prayers. Take care.

Vent anytime, as long as you want, we all understand what you are going through and what Your Granddaughter is going through.

[QUOTE][I would like to ask if maybe someone can tell me what you think while in this state of coma and on all those drugs they keep giving her! Is she REALLY understanding, we have one pinky and one eye movement that she communicates with. Does she really know all that is going on? /QUOTE]

I am a big believer that some information does get through to you while you are unconscious. I knew things that I could not have known otherwise. I knew that the first doctor i had in ICU was Indian and he had left the hospital. I had a feeling that he wasnt very nice and my family later confirmed that he was very negative and made them fear the worst. There was a period of a few days where i was out of the coma but i wouldnt say i was “conscious”. I had some very bizarre hallucinations that were very real to me at the time. But there were certain facts that were woven into these hallucinations. I remember one very important doctor named Peter( i later recognised him by his voice and he turned out to be the head of the hospital) telling me i would be getting a new doctor on Monday named Andrew O’Connor and he was irish but dont hold that against him. Sure enough on Monday i had a new doctor, he was Irish and his name was Enda O’Connor – close enough! Might not seem so amazing except that in my head this conversation took place in the underground car park of the hospital where there was a theme park and i would later be dropped off a cliff in my hospital bed. I was also aware of who was there visiting – they ended up in my halluciantiosn too lol! So dont underestimate what she may be aware of even if her level of consciousness is low.

You also asked about bowel movements .. warning tmi coming … i didnt go for 24 days! It got to the point where every change of nursing shift they would aks. I knew the handover process better than them and if i could talk i probably would have recited it for them! They tried every enema they had in their arsenal, including ones i am sure were meant for horses not humans! I know they were worried abouyt bowel obstructiosn but as far as i was concerned, it made sense to me – no other muscles in my body were workign why should my bowel be any different? In the end i had to have a manual evacuation (the worst part of my whole GBS experience) But i had the last laugh – once i was cleared all those enemas went to work and having no muscle control i could do nothing about it. I still giggle thinking how i was laughing to myself thinking “serve you right”!

Which reminds me, just because her body isnt working doesnt mean her brain is affected. If anything, my mind went into overdrive. I had little jokes with myself and had all these great one liners that i wished i could have said out loud sometimes. I dictated letters i would write and designed communication charts that i wished i had to use. It is a double edged sword, it means you are also aware of your predicament but there were only a couple of times that it really got to me – it wasnt that i was worried that i wouldnt get better just that it was hard not knowing how long it would take and sometimes that uncertainty that got to me. I would say she is understanding everything they say to her and if she can communicate with a pinky then they will be able to ask yes/no questions (getting people to ask the RIGHT questions is the hard part!)
If possible, can you get some of these posts to them as i am sure it would help her to know there are others who have been through it and come out the other side. I know what kept me strong was knowing so many people were thinking of me and praying for me. I wish my family had found this forum!

It’s wonderful to hear that she’s over the pneumonia- that can really be a huge obstacle. And the fact that she is using her eye and pinky is exciting too. She can hear what’s going on even though the meds might somewhat distort reality. We tried very hard with our son to talk to him, not about him, at the bedside and to step out of the room with the doctors if the discussion would be disturbing or upsetting to him. He remembers alot of what was going on and bits and pieces of these memories surfaced in really vivid, sometimes frightening dreams.
I made a poster and put it on the wall behind his bed. On it, I copied a couple of photos of him and wrote a little about who he is and what his interests are. This seemed to help alot because the staff could see the healthy version of my son and relate to him better.
It might be a good idea too for a Speech Pathologist to consult to develop a communication board so your granddaughter can begin to express herself as she becomes more alert.

Grams,

I had to say that I am very touched by the love you have for your granddaughter. You remind me so much of my mom and her relationship with my son. He is only 5 and she recently passed away but she would have given her life for him. She cherished every minute with him, without a doubt in my mind.

Your granddaughter is so very very lucky to have you and she knows that you are pulling for her . I have not gone thru this but what I have read from others that have, yes, they did know when others were there but not so much of what is going on.

Someone will come along soon with more experience with that. You and your granddaughter are in my prayers…stay strong…everything will be ok.

Stacey

Hi Grams.
I have been keeping up with the shareing of information. Your Grandaughter could not be in a better place than here.I got GBS from a flu shot in Nov 2006 and I was one of the few that had a mild case of GBS. I was only affected from my feet to my knees and I was guided to one of the best Neuroligist in my area and she knew instanley what I had and how to fight it.
I was blessed in so many many ways and all the prayers for me made a big difference. Love ones knew they could not reverse what had happen but they did give me that gentle hug which was so calming. I accepted what I had and turned it over to God (as I understand him)I was at peace and knew everything was going to be ok.I was affected with GBS in Nov and by March was walking. I said to my God use me to help others and I have been used several times.
You asked if someone can hear while in a coma or under drugs and the answer for me is I did. I was not scared I was mad because I could not make every one understand.
When someone came to visit me they came in smileing and were like they would have been if I wasn’t in the hospital.She definatley does not need gloom and doom from family or visitors.
It is good to learn all you can about what she and we have. you can tell everyone you can to NEVER TAKE A FLU SHOT or IMMUNE SHOT. Also we have found out that 60% of the Nurologist don;t know what GBS is and many that do do not want to treat it. because they never learned.
You as you have seen will find pure love from everyone here and remember we are and have walked the walk and many still are. She will get well but not when you feel she should it will be in Gods hands and hers. She is fighting hard while everyone see’s her in a coma. I had a triple bi-pass last yr. I was put in a light drug coma so I could rest. I could hear the doctors and nurses and love ones talking. their voices sounded weird but I could hear.
I had no fear or worry as I had turned myself over to God and it was in his hands.
Grams you slow down. (please) enjoy your moments and time with her. start looking for improvements every time you see her. think postive and give postive love. remember at the moment her only connection with others is through you. I have been praying for her since I saw your post and all the others that has been through or going through this are praying for her. When you are with her chat about all the happy times you have had and will be haveing. This will be a slow healing process and then it may be fast. Only God know. (Steve)

Grams,

first of all, welcome to our family, we are all friends. We are here to support you however we can. This disease can be so very scary, don’t ever lose your faith. I am in Michigan but am a 4.5 year survivor of CIDP and am happy to help however I can. If you need to or want to, call me anytime, I am a liasion in Michigan but help wherever and whenver I can. My number is 734-929-4653. You guys are in my thoughts and prayers.

Jerimy

Was it our dear friend, Gene, who would say “never give up, never give in”? Your granddaughter is locked inside but it’s temporary. It may take awhile ~ no one can tell you how long, what kind of recovery, etc. It seems to be quite an individual journey altho there are many similarities. That’s why the support of this family is so valuable. Some of us have had really strange effects but when we mention it, sure enough, someone else will say “me too”! Somewhere on these forums is a very long thread about residuals that each of us has/is experiencing.

I continue to keep you all in my prayer thoughts. You’ll be surprised how soon your granddaughter will be able to communicate directly with us! For now, please keep encouraging her for us (GBS/CIDP family) and give her our family hugs 🙂