8 year old son with CIDP

    • Anonymous
      February 21, 2007 at 2:06 pm

      Hello, this is the first time I have posted a thread. My son is 8 years old and he was diagnosed with CIDP in July 2004. he has had serveral IVIG treatments. He is doing well as long as he has the treatments every 8 weeks, we have been doing that for almost 3 years. I really am concerned with how he handles this emotionally, he does not like to talk about it at all, and if we bring it up he gets very upset and wont talk. If there is anyone that has any suggestions it would be greatly appreciated.


    • Anonymous
      February 21, 2007 at 4:05 pm

      Hi Wendy, Welcome to the Family. Sorry to hear your son has cidp. I have a 8yr old son also, i can’t imagine how i would feel if this stuff happened to him. he is developmentally delayed and the only lifesaver that we have found to help him express his emotions is to have him meet with a counselor. his counselor is wonderful, helps us to deal/help him with his delays and other problems that come up in daily life. counseling might be a way of you helping your son to deal with his anger, fears and daily living. i hope you can find something that will help both him and yourselves. keep up a positive attitude, it helps alot also. take care.

    • Anonymous
      February 21, 2007 at 9:52 pm


      My daughter got CIDP between 9-18 months old , diagnosed at 3 1/2 years old and is 10 (she says 11 in May). Abby has always been very open about her CIDP, she wants people to understand. It might just be her personality, she would get mad when she said “hi” to strangers in the mall and they won’t say “hi” back when she was 3 years old. We had a wonderful home health nurse that helped us deal with things when she was younger. She explained how she wanted Abby involved with helping do the infusions. She felt like she had some control of things happening to her.

      Abby stopped IVIG for about 3 years and just got another port Oct. 2006 and started IVIG again. She has been seeing a therapist to help us all deal with things because she started the “why me” with the new port. She has been really amazing in how she is dealing with it all, better than me at times. She has talked with a 14 year old girl from CT who they thought had GBS 2 years ago but went to Mayo in Nov. 06 and it was changed to CIDP. It was nice she found someone she could share with and know it wasn’t only her.

      I think it is so important that we help them learn to deal with the CIDP and be able to talk to us (parents) so we know how they are doing. It is sad to say but the CIDP is not going to just disappear if it is ignored. Most likely this will be a life long thing for them to deal with. My understanding is that your emotional health can affect how your immune system works. Too much stress for even a healthy person is not good. It may sound harsh but here goes…I think the most important thing you can do for him is to not let him hide from what he is feeling. How can he begin to expect you or his doctor to know how he is doing unless he can talk about it. Even at almost 11 years old the doctor still asks me to explain how Abby is doing at each visit.

      We found Abby’s therapist through the hospital she got her port at. She is used to dealing with kids who have had medical issues. Iniatally I had to brib Abby that we would go to Chuckie Cheeses to play game right after each visit to the therapist. She got to the point that she feels it is a good thing because it has helped the whole family deal with the CIDP and just getting along better.

      I know it’s not easy. I know there have been times (a few) when I forget about what I need to do or watch with Abby, but it is still there. I try to watch what I say in front of her. Abby knows what pains and feelings I need a phone call about. You have to think of what is in your son’s best interest for his long term future. He isn’t far from puberty and that in itself could stress his immune system and cause for closer watch of his CIDP.

      Abby says Hi! 🙂
      You can email us at [email]cindy@fletch.com[/email]

      Would love to hear from you.
      Cindy and Abby

    • Anonymous
      February 23, 2007 at 8:47 pm

      Thank you both, Jeffery does talk with the hospitals Child Life specialists and at times it seams to help until he has to get his next tx. He is terrifed of the polk. We will most likely be getting him the port this year. I am just concerned with that. It will be another thing that will make him feel different.
      Thank you again
      Wendy and Jeffery

    • Anonymous
      February 24, 2007 at 7:43 am


      You didn’t say if he can attend school or not. If not, they still can help by providing home tutors to keep him up, if he is able to do work or not. Of course, his health comes first and academics can be caught up. However, being able to keep up with academics may help him feel “normal.”

      Please be sure the schools are aware of his condition- esp. the school nurse (not the health aide per se, but the nurse).

      However, as much as it pains us as parents, sometimes a child doesn’t want to talk to the parents because he/she doesn’t want to worry the parent and doesn’t want to face his fears. They may mask this with anger/withdraw, etc. A teacher at school may be able to connect with talking as well as the good counselor suggestions. Just be there to listen when he finally opens up to you. I wouldn’t push the issue, though, as hard as that must be.


    • Anonymous
      February 24, 2007 at 9:49 am


      I’m not sure I have any advice, however I would like to tell you about my journey since 1985. I ‘got’ gbs at the age of 18, had a trach for 6 weeks, and PT for many months thereafter. For almost 18 years I did not want to speak to anyone about it, only a girlfriend who I got to know in 1990, after she had tried to get a support group together, since she had gbs too. I didnt even really want to talk to other GBS’ers about it, only her, as she went throught pretty much the same as me, she was a girl and slightly older than me. She was the ONLY one I felt comfortable with, we would laugh about it together, but not go into really great detail. My mother would sometimes bring it up around close friends if we were at the dinner table together and she was trying to explain what happened to me. I would always get up and walk away, even up until 4 years ago. I thought I was having a relapse a couple of years ago, and its only because of that almost relapse, and trying to find more information, since my doctors really were’nt interested, that I got very involved with this forum, talking abou it, and trying to help other families going through this. I still havent told most of my friends exactly what Im going through, its just too hard to explain, even though I really do want them to understand, I just cant …… Its so hard to explain. I wish they could understand the fatigue, the pain and my trying to come to terms with the new way I have to live, I just know they cannot relate, even if they wanted to. I know this is not advice, as I said, just maybe trying to help you understand maybe why he may not want to talk about it.