Do we vaccinate?

    • Anonymous
      April 1, 2007 at 11:25 pm

      My daughter was dx’ed in October 2006. She is recovering very slowly, walking with a walker. Her neurologist who treated her in the hospital prepared us that she may never walk unaided again. To make a very long story short, we decided for a second opinion…why not. We took Abby to the Cleveland Clinic March 21, 2007. While we spoke to the neurologist, we asked many questions. He advised us not to vaccinate Abby for 3-5 years. Has anyone else been advised of this? I understand the logic, but I am also concerned of how the schools will react, (she is only 4, and has 1 1/2 years until kindergarten) and other issues that will arrise. Any feedback would be greatly appreciated.

    • Anonymous
      April 2, 2007 at 12:10 am

      Hi Mary ~ that’s a very good question. This topic probably has generated the greatest amount of discussion on these forums!! To see what all has been said go to the top of the page, click on search, then type in vaccinations. You are always welcome to come back with further questions. Happy reading 😉

    • Anonymous
      April 2, 2007 at 7:07 am

      Mary G.

      My Primary Care Doctor advised me not to get a flu shot and still does. Let us know if you have any questions regarding the material you find do a search.

    • Anonymous
      April 2, 2007 at 8:11 am


      get a note from the neuro for the school. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • April 2, 2007 at 11:20 am

      Hi, my name is Dawn and my son is Kevin. He was dx. in sept. 06 at nine years old. He is now 10 and he has had two courses of ivig. We also have been told NOT to vaccinate. We were given a note by our neuro. and the school was understanding. Religious or medical reasons can excuse you for vaccinations. I WILL NOT vaccinate my son for certain immunizations, measels, chickenpox, mumps etc. These in my opinion are illnesses that can be overcome and because of mass vaccinations, there is probably little risk to contracting them as opposed to the risk of the shots themselves once one has been dx with aidp or cidp. One vaccination that I will consider when the time comes is tetanus. I also will take a pass I think on the meningitis vaccine for college. Instead we plan to purchase a condo near the shcool Kevin chooses instead of dorm life. Het it’s an investment too! I probably will not have my 13 year old son vaccinated as well, as there is a genetic link (as suggested by numerous studies) between autoimmune diseases. Hope this helps, e-mail me if you want! Dawn:)

    • Anonymous
      May 10, 2007 at 12:47 pm

      A lot of info is here about shots. You can type in the words flu shots, immunizations, vaccinations and you will get lots of info and posts.
      Trudy, natesmom

    • Anonymous
      May 21, 2007 at 4:54 pm

      I’m aurélie, and my daughter had a gbs on 01/01/07. she is 6, and she recovered totally, in 3 month!! but I ask me the same question, about the shots. her neuro said us we stop all vaccinations for 1 year, and after there are no reasons gbs come back again. But I have a friend (her daughter had a gbs too) , who doesn’t want never vaccination for her daughter… I don’t know what I should think… I’m sorry for my very bad langage, I’m french !!!
      bon courage et à bientot!!!

    • Anonymous
      May 21, 2007 at 10:14 pm

      hi aurelie,

      your english is fine. each of us must decide for ourselves which is the less of 2 evils, slight possibility of getting gbs again vs. not getting what the vaccination offers [if, in fact, it offers any benefit]. in the usa vaccinations for the flu are near useless. 70% of doctors do not give it to themselves nor their family. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 2, 2007 at 1:02 pm

      Hi Mary G,
      I’m new to this forum and it looks like you’ve gotten great advice about vaccinating your daughter. If you choose not to vaccinate, here are some things you should know: every state has exemptions for vaccination–your daughter likely qualifies for a medical exemption for having GBS. If not, your state may have a philosophical exemption. Your school may give you a hard time, but in America, a public education cannot be denied. no matter what they tell you, it is not a LAW to have your child vaccinated. They cannot deny her public education just becasue she is not vaccinated. If you have any questions, let me know. We have done tons of research into the legality of this because we have never vaccinated our kids. My daughter (age 3) is recovering from GBS and they told us never to get her the flu shot.

      hope this helps.

    • Anonymous
      July 16, 2007 at 12:47 pm

      My daughter had GBS in 2005 (at age 4 1/2). We simply go to the health department and sign a waiver (you can also write “signed under diress if you don’t want to sign it) that we are not vaccinating due to medical reasons and we haven’t had any trouble. Don’t let them bully you into anything you don’t want to do!

    • Anonymous
      July 16, 2007 at 2:34 pm

      My daughter is recovering from GBS (she will be 4 in August). How does your daughter do when she gets sick? Do GBS symptoms come back? Has she ever had a recurrance? Does she have any residuals? I have so many questions! The docs tell me that she should be good as new in several months and she probably won’t have a recurrance since she had it so young, but other people tell me that symptoms come back when they get viruses. Event though Hill is recovering well, I have no idea what to expect in the future. Can anyone shed light on this??


    • Anonymous
      July 16, 2007 at 6:56 pm


      the docs are wrong. the chance of another gbs attack [for all & no reasons] is 3%. no one knows, cuz she is young, that her chances are better of no more attacks. the younger do seem to recover faster & better. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 2, 2007 at 8:53 am

      I am new to this forum, but my daughter is entering Kindergarten with GBS (Axonal) and we did NOT get the vaccinations.
      I got a form and had my Neurologist fill it out, took it with the ones she had prior and that was that.

      School was fine with it.

      Hope you find your answers.

    • Anonymous
      August 25, 2007 at 8:09 pm

      Hi Hillsmom-
      My daughter is now 7 (just turned a few weeks ago). For some reason it seems when she gets sick, it hangs around longer and is sometimes followed with brief “tingle legs” or “duck like walking” for a few days. Her body has been through major trama and it takes a long time for it to fully heal. I would say she is about 90% better than she was at her worst. She does not get sick any more easily or anything it just seems to hang on a long time. Makenna (Kenna as we call her) has had to go back to the hospital 3 times for IVIg treatments which seems to always help her so much. This last time, she had a reaction to the IVIg which was a VERY severe headache and throwing up for 7-10 hours. So, her dr. has said no more IVIg for her because of the danger to her body. We have found that time does heal a lot with GBS. She may have up days and down days but all in all she keeps going forward in healing so we are so thankful for that! Her school is wonderful and helpful which is great for us. She also has wonderful, understanding doctors which helps too. I pray for complete healing for your daughter and the strength and courage for you to face this head on!

      I did write a book about our experience that you might be intrested in.

      [url][/url] or you can get it off (put Amy Kuncaitis in the search line (last I checked was sold out but they might have them now- I know you can get them from because those will be shipped out by me personally. The book is a positive uplifting book that would maybe inspire you 🙂

      ~Amy Kuncaitis
      Author of “Joy in the Morning”