Children of GBS patients

    • Anonymous
      September 2, 2008 at 11:14 am

      I thought it might be helpful for the newbies for those of us who had children when we were going through acute GBS to relate our stories. I was pregnant when I came down with GBS and had a two year old son at home. I did not see him for three months because I was in intensive care and then in such bad shape that I was afraid it would scare him to see me. When he finally came to the hospital for a visit he climbed into bed next to me and didn’t want to leave. I cried and he cried when he left. I was so afraid that he would forget me. How stupid that was. When I finally went home, in a wheelchair, my son would sit on my lap and “ride with mommy.” I worried about my absence from my son, but everything turned out okay. My baby girl was also born healthy and today has children of her own.

      If you are concerned about your children, especially very young ones, don’t worry, especially if you are lucky enough to have a spouse or other family members who will love them while you are going through this.

      Take Care, Susanne

    • Anonymous
      September 2, 2008 at 1:05 pm

      Great topic!!

      When i was admitted to the hospital, my son was 6 months and the other was 2.
      They came to visit when they could and i would cry every time. I was terrified my youngest wouldnt know me as mama b/c everyone else was taking care of him. I was in the hospital for 3 months. Some days, i told my husband not to bring them b/c i couldnt see them. Emotionally, it was ROUGH!!!!!!!

      Anywyas, i am home now, 8 months later and the only word my one year old says is “mama”!!!!!! He knows me, he loves me, and i love him. My now 3 year ols is terrific w/ me. He sees me standing and encourages me to walk more. He gets excited when i stand.

      I want to get pregnant again soon, but am scared.

    • Anonymous
      September 2, 2008 at 1:23 pm

      Great idea Susanne! I was the mother of four ranging in age from 1 year to 8and 1/2 years. I would be happy to share with any mom or dad who wants to hear my story! It is definitely difficult being away from your kids. I was in hospital almost 4 months and 2 hours away so did not get to see the kids for the first couple months.

      Ask away, and we’ll help where we can!

    • Anonymous
      September 2, 2008 at 6:14 pm

      Great idea. I have a totally different story. My daughters were both grown & have children of their own. I have four beautiful grandchildren. My oldest daughter is an RN, works in oncology, She had me diag. before we ever went to the hospital. I thank God for her everryday, because of the early tx. I think I was spared the whole ventilator thing. Getting early tx. I’m sure slowed the rapid progression. In exactly one week I went from numness & tingling in fingers to not being able to walk. Thank God for Heather. Tiffany is also in the health care, she works in x-ray specials dept. I was in a Hospital 1 hr. from my home town, but where Tiffsany lives. The girls brought the kids to see me as much as poss. That was my safety belt and gave me the strengh to go on. And God I needed that!:)

    • Anonymous
      September 2, 2008 at 7:58 pm

      Thanks to all who posted. The fear of your child not remembering you, when you are gone for months, is heart wrenching. I just wanted to reassure others in that position that kids do remember and usually don’t suffer long term problems. Often they like to take part in your recovery. My son went with me to rehab. The therapists were absolutely charmed by him and he got to see mommy take her first steps.

    • Anonymous
      September 2, 2008 at 8:36 pm

      Hi guys,
      Just wanted to let you know this. My kids are 22 and 18. My daughter joined the National Guard a year ago and was not allowed to take the flu shot, flu mist, or donate blood, the army wouldn’t let her because I have GBS. Today her unit got activated and her commander told her that if they won’t allow her to have the shots tomorrow that she needs (not sure what those are yet), then she will not be allowed to deploy with the unit which could then result in a medical discharge. I am really surprised that this is happening..anyone else know of this.

    • Anonymous
      September 2, 2008 at 9:41 pm

      My kids were 8, 4 and 3 and i was in hospital an hour from home so i didnt see them for the first 3 weeks. I was lucky to have a wonderful doctor in ICU who encouraged me to let my children come and see me. I thought they would be scared of all the monitors and tubes etc and the fact i couldnt speak. Once i was off the ventilator i agreed to let my daughtr come and see me. She was a bit shy at first – i think the sight of mum drooling and with an eyepatch scared her at first but then she started stroking my arm and it was so lovely to think she was comforting me instead of viceversa. Once i could write we would exchange messages, she thought that was great fun. My sons were only 3 and 4 and i was worried about them running amok in icu as much as frightening them but the doctor kept pushing me to let them come, he thought it was important to them to know i was ok (like i said a wonderful doctor who cared for my emotional side as much as physical) My 3 yo walked in and said mummy has a sore nose (because of the tape holding the ng tube – he thought it was a bandaid) Wasnt phased by the tubes or the trachy one little bit. Just goes to show the kids are more resilient than you think.

    • Anonymous
      September 3, 2008 at 9:08 am

      My son was in the marines stationed in N.C. I didn’t want him to see me in the shape I was in even at his age of 30 and did not want him to come home. After being in the hospital a month and getting no better at that time, he took a few days leave and he and his wife came home. I know it upset him to see his mom in that shape but I was so happy to see him. It was also the first time I met his wife. Our children have lost a part of their lives as they once knew it but accept the new us as we do.

    • Anonymous
      September 3, 2008 at 9:21 am

      My children were 13 and 15 when I first came down with CIDP and was hospitalized for 4 months. They came to see me about every 2 days but both admitted they didn’t like to come after I got home….Not that they didn’t like to see me as it reassured them I was OK but it was the whole hospital atmosphere that they didn’t like. They liked the nursing home even less as it was depressing to them. What I still cherish is coming home and my teenage daughter climbing in bed with me to spend time talking and admitting how scared she was that I was never coming home. That was when I knew I still had my place as “Mom”

    • Anonymous
      September 3, 2008 at 4:53 pm

      Just wanted to let everyone know something. Since alyssa is being sent to louisianna she had to have the hepatitis B shot, when they gave it to her they told her she couldn’t be around me. So, she called me and told me this, I called my doctor and ask them why. The nurse told me that since it is an active virus I should not be around her for 24 hours. I have never heard this before. Has anyone else?

    • Anonymous
      September 4, 2008 at 4:14 pm

      I’m assuming this is open to us men as well. When I was hospitalized I had 7 year-old twins and my wife was 7 months pregnant. I had a pretty good/bad case of GBS. Went on a ventilator after 3 days and was in ICU for about 6 weeks, heavily sedated so I had no real memories. My wife said one of the hardest things was the nurses & doctors telling her “we’ll have to get him ready so he can be there for the birth.” It was soon obvious to her that there was no way, but some of them persisted in saying it, how my wife didn’t tell them off was beyond me. She went ahead with her delivery in the hospital of her choosing with her ob doc and had a healthy boy. Again she had to go thru a lot of questions as to why she didn’t have it at the hospital where I was .

      I was just coming around about 10 days before she gave birth and if I said anything during that time that made sense it was purely an accident, because I had been so heavily sedated. Afterward, I had thoughts that I would never be able to bond with my new son. I did get to see him a week after his birth and it was tough when I got home six weeks later as I could not care for myself much less him, but within a few months we both figured it out.

      My other two were a different story. The hospital staff worked with my wife as to what to tell them and when or if to bring them in. My wife and the therapist had asked me as soon as I was able to respond if I wanted to see them and I repeatedly said no. After about 10 days they said I told them I was finally ready and my wife brought them in and then came in alone and asked if I was ready that day, and I turned around and said no. (I have no memory of this, just that it put her through a tremendous amount of grief as if she needed more.) Luckily (I guess) they had been used to me travelling on business for a week at a time about once a month so between that and their age (and a very caring aunt and uncle) they dealt okay with it. Early on I mentioned that I had no real memories, but I did have several detailed hallucinatory memories involving getting myself ready to see them. The clearest one had to do with me being in almost a prison type setting and having to prove myself worthy of a visit, and buying mock presents. The visit somehow had also connected with a train trip as if I was on the train and only had limited opportunities to visit.

      Sorry for going on so, the topic just brought back a rush of memories.

      All in all it went as well as could be expected the kids proved very resilient.

      GBS March 2005