Just curious….

    • Anonymous
      April 6, 2010 at 2:50 am

      I am in the Northern California/Bay Area region here in Cali….

      Just curious if anyone else here goes to UCSF for treatment for a child….I would love to “buddy-up” ….for support and such. My son was Dx’ed in 2007 with CIDP…at age 3….it’s been a long haul, going to UCSF every 4-5 weeks for treatment. He’s stable now, with a GREAT attitude, but treatments will continue for a long while.



    • April 6, 2010 at 8:30 am

      Hi Linda,
      Can you guys do home health care? When we started it everything was easier. The nurse tries to make it as fun as possible. They watch movies, have lunch together, play xbox together and even drag the iv pole onto the patio and shoot the air soft guns. The cost is less as well and you don’t have everything fall apart at home with the other family members. We use Coram healthcare. They have not ever been late and always professional. Good luck to you. Keep us posted. Please do not forget, that children have the best chance of going into remission being that their bodies/imune system are constantly changing. Keep the faith and hope!

    • Anonymous
      April 6, 2010 at 10:25 am

      Sorry we are miles away but buddies in spirit.. I’m curious what do moms tell their young children when they are going in for treatments. Since my son doesn’t “feel sick” when we go in for monthly treatments he has a really hard time understanding why he has to go to the hospital…

    • Anonymous
      April 7, 2010 at 10:26 am


      I tell my daughter that this is going to help her walk and that it is medicine in the tube. She will repeat it over and over. It becomes a way of life and I do not say that lightly. I never thought that you could get used to this. Children are so much more versatile that we think. Tell your son that this will help him run and help his feet to not hurt or itch and will help his calves. It also helps my daughter to see the other children at the infusion clinic. I am a social worker by trade and I guess I like the idea of my daughter being accepting of others as some of the other children at the infusions center are in wheelchairs or use walkers. I really believe that she is going to do something big when she grows up. Who knows maybe she will come up with a CURE for cidp.

Just curious

    • Anonymous
      October 4, 2008 at 10:29 pm

      It’s been 11 months now since I had GBS and I have recovered remarkably well. Just occasional tingly feet, some numbness here and there every once in a while and weak knees when I work out too much. My question is, can stress cause a relapse? My mom worries a lot about me if I get even a little stressed over anything. Someone told her that she knew someone that had a relapse due to stress and ended up dying. Has anyone else ever heard of that being a cause of getting GBS a second time?

    • Anonymous
      October 5, 2008 at 1:21 pm

      True! Stress can cause alot of health problems, relapse included. Its really important to have a way of destressing. GBS itself is stressful on a body, let alone external stressors and their effects on top of that. Don’t live your life in the past, don’t worry about the little stuff, be positive and listen to your body. Life is there to live to the fullest. Take care.

    • Anonymous
      October 6, 2008 at 4:23 am

      I think it is important to consider two different things about “relapse” in GBS. First, often what is meant is “relapse” in symptoms–meaning that it is harder to walk or increase in the pins and needle feelings or distribution or numbness. I think this is pretty common to worsen with “stress” from my own experience and from what I have read here from others. It is like overdoing exercising and probably for the same general reasons–that stress causes people to use their body differently–you may sit/move differently, sleep differently, but more important be tense or agitated. the tension or the finger tapping or restless pacing (or other increased nerve/muscle utilization) is like increased walking. This should be a kind of temporary thing although it is scarey, it does not necessarily mean that the immune attack is worse, just that the nerves are at that time trying to work at a different level than before and protesting or not being as effectient because of previous damage. (That is, not new damage, just uncloaking of the old damage by pushing the nerve to work harder).

      The other side of this is that major stress especially if prolonged–like taking care of someone you love who is very, very ill or dying or having major surgery affects the immune system balance and can cause a relapse of the disease–meaning a new attack on the myelin and additional damage formation. this is less likely, but it is possibly what happened in the case your mom is worried about. Some people relapse and whether that person relapsed due to stress, the degree of stress they had, and all the other many factors that affect this disease, you do not know in this situation. Life is stressful–especially life with GBS and we all are stressed more than every before in ours lives, but true relapse of the disease is rare. I hope that that gives comfort to you, that the stresses really to worry about are likely the major life changing ones not the day to day ones and that the “return of symptoms” or “residuals” are not the same as new damage happening.

      I do not know this for a fact, but this is my understanding of a complex problem from years of thinking about autoimmune problems in other people and for the year and a half that I have lived with this in myself.

      WithHope for a cure of these diseases.

    • Anonymous
      October 6, 2008 at 6:48 am

      I think stress can trigger alot of factors with many diseases. Someone with lupus under large amounts of stress can trigger a lupus flare. I guess this would be the same for GBS. Stress causing residuals making the nerve damage act up and causing problems. And then there are the rare cases that don’t happen much but have happened where a person got GBS a second time. But what triggered that second attack might not even be to stress. But stress can cause many problems in other diseases as well, including heart disease.

    • Anonymous
      October 6, 2008 at 2:59 pm

      thanks for the replies. The stress I’m dealing with is the illness and imminent death of my mother-in-law, we were very close. It’s not so much that I’m not ready to let her go just seeing her suffer is hard. My husband has 5 siblings but we’re the only ones that live in town although they are here to help quite a bit. I work part time in the mornings and teach piano in the afternoons and am trying to provide meals, support etc. for my father-in-law. I don’t really feel ‘stressed out’ so to speak, I’ve just gotten used to resting when I want to and that’s not happening. For those of you that are believers out there please pray for me, I know that’s what has gotten me this far and I know that whatever tomorrow holds, He holds tomorrow!