Im so sorry about your baby. While I know very little about infants with C Diff, I relapsed for over four months. The med that finally seems to have turned the corner for me was the round of Vancomycin, immediately followed by the Vanco-taper protocol - cold turkey simply meant three days until relapse for me. You may suggest this to your pediatrician as it seems to be the newest protocol they are finding has better results. CalGal is right, the newer toxins are becoming more virulent and tougher for Primary Care physicians to knock out - my doc and I have learned together. I didnt see a specialist because I did in fact respond to the antibiotics and stableize, but my doctor kept in very close contact during this period - go with the doctor you feel most comfortable with for your little angel, make him/her hear your concerns. Has the baby tested positive since finishing Vanco? There are success stories for infants at the cdiffsupport.com website as Im sure you've read - those certainly can be encouraging while battling this best - perhaps you could contact those parents via the site. C Diff certainly does a number on the gut, and leaves most with symptoms of IBS for a very long time - making it difficult to diagnose actual relapse versus "leftover icks". It does get better eventually, I promise. Best of luck to you and your baby.
I know of adults who use this route when the 'usual' fails. GI docs are good for many situations/issues, but few know all the variables that an ID doc knows about C. diff. The situation with C. diff has changed over the last few years. It's being diagnosed far more often and it seems to have changed in the form of toxin its putting out making it more difficult to treat. The problem with C. diff is that if it isn't attacked correctly the individual suffering from it may have continuing problems. I wouldn't wish that on anyone.
Thanks for the reply. I was planning to go to see a GI doctor about this.
As that's most people do when they're diagnosed with C.DIF, that's what I've
seen from the cdiffsupport.com :-)
Maybe I should check out a infectious disease doctor as you suggested.
By the way, do you know of anybody that has been cured by going to the
infectious disease doctor? what's their success story?
thanks again,
--jye2848
Are you working with an infectious disease doc in addition to a peds person? In this day and age of C. diff, it can be important to do so. Please get a referral and be seen as soon as you can.
In the meantime, you may want to check with www.cdiffsupport.com. You may find parents on that board.