Cellcept for Kevie..NO WAY!

    • December 4, 2007 at 8:57 pm

      sorry no info

    • Anonymous
      December 4, 2007 at 10:39 pm

      Glad to hear that Kevin is doing so well! I think you probably know just as much about CIDP as the drs., and you (more than anyone) have Kevin’s best interests at heart. So do your research, do what you think is right and know that you have done your best for your son.

      Hugs from Iowa.

    • Anonymous
      December 4, 2007 at 11:41 pm

      I am thrilled that Kevie is doing so great. I am with you, stick with the known, & you already know IVIG works for him. It is also safe for children; what is the documentation on Cell-cept for children? Don’t let your son be a guinea pig, just my opinion…

    • Anonymous
      December 5, 2007 at 1:01 am


      stick w the ivig only for now. see how good it is working. i wonder if the doc is filtering in the $$ & handing you some bs. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      December 5, 2007 at 10:45 am

      Dawn, Go with your feelings on this. Make it known to the dr what you are thinking and make him understand you are doing what you think is best for Kevie. The 2 of you can put a plan together, since you know just as much about this syndrome as he does. You are Kevie’s voice and His Mom, You have the right to be in on the plans! If it were my son, I wouldn’t put him on cellcept unless he was bedridden. Maintenance is the Key word here, if Kevie is doing Good on what You have been doing, than keep him on that track. If in the future Kevie progressively gets worse than change his routine abit to get back to baseline again. As with everything else with this syndrome, its hit or miss. It sounds like You have already Hit the mark at this point, why rock the boat more! Go with Your Feelings Mom! Big Hugs to Kevie!!:)

    • Anonymous
      December 5, 2007 at 12:27 pm

      You already know what I’m going to say. But I’ll type it up here to make if official.


      The ONLY way that I would use Cellcept would be if IVIG, plasmapheresis, AND steroids didn’t work. For me, Cellcept is a last stitch effort. Well, maybe I’d use it before the plasma but it would need MUCH consideration.

      Look, like I said on the phone, Kevin responds to the IVIG. He relapses every…what…we’ll say 4 months to be safe. Why should he be put on the drugs for people who don’t respond to the IVIG and aren’t fully recovering while on it? That doesn’t make ANY sense to me.

      You can always get another dr’s opinion too, ya know.

      Go to [url]www.cidpusa.org[/url] & look under kids & CIDP. I’m sure you’ve already looked there but that’s the only place that I can think of off hand that will give you backup for the dr about the IVIG only treatment. You can also Google CIDP & children, CIDP & IVIG administration, IVIG and children. I’m sure you’ll get some links.


    • Anonymous
      December 5, 2007 at 11:07 pm


      Here is a journal article:

      IVIG therapy in neurological disorders of childhood

      Journal of Neurology
      Publisher Steinkopff
      ISSN 0340-5354 (Print) 1432-1459 (Online)
      Issue Volume 253, Supplement 5 / September, 2006
      DOI 10.1007/s00415-006-5014-y
      Pages v80-v86

      The article is subscription only – but there are a few ways to access it: go to your local library and request an intra-library loan. It may take a week or so, but they will attempt to get a copy from a medical library they are affiliated with. If you can’t wait that long, find a medical library near you, and plan on spending the day there browsing their journals. I do this at UTSA.

      I don’t know how specific it is for cidp – but it could have some helpful info for you.

      Ivig treatments are like an art – the doctor has to find the least amount needed to be effective and the longest time interval before symptoms of relapse begin. Then he has found the optimal treatment dose for your son. I can’t understand – especially in your case w/adequate insurance – why your doctor would make such a drastic change just when things are starting to get better. What gains does he anticipate from cellcept over the use of ivig? (I’m not talking about convience, but physical gains for your son’s health, both now and in the future).

      Regarding the loading dose – *I’m just a mom, so what do I really know* – but it seems Kevie has responded to the initial loading dose in a positive way – why more “loading”? Once he responds, isn’t the next step a maintence schedule? *I’m just saying …* do the least harm.

      best wishes,

    • Anonymous
      December 17, 2007 at 12:54 pm


      I just happened to stumble on a thread on Topix that discusses cellcept. There is a young boy, age 12, that has had cidp for several years, and this summer had his treatment changed from ivig + steroids to cellcept. His mom’s name is Sadie, and they are in Chicago. Thought you might be able to compare notes on treatment, side effects, doctors, etc.

      Be careful, though. Topix is only web-interfaced – no private messaging. Perhaps you could reply to her post, and tell her about gbsfi forums. That way, if she decided to join our discussion forum, you will have pm available to exchange info privately without posting personal info.


      best wishes

    • December 19, 2007 at 12:04 pm

      Thanks CD, I am going to try to go to topix.com right now!