Hey All,
We are still alive and well. My son is now 7, and has been in complete remission for one year now. In fact, I remember last Halloween being 2 days after his transplant. He ran around the neighborhood that day feeling great...it felt like a miracle.
Since then, we slowly weaned him to the point we are today. Still doing one FT per month as adjunctive therapy along with the Remi. We will wait another year before attempting a wean of the Remi. We'll keep doing the once a month until then. Are plan is to step Jack down onto an easier and safer med.
Jack also developed 7 step throats last school year, so we had his tonsils removed this summer. Yes, he needed abx each time to kill the strep. We were of course very concerned about how that would affect his transplant. Well, it didn't really seem to cause problems.
I don't think or recommend FT be used as a cure for IBD, but instead in conjunction with other meds. My son was facing immediate surgery with the GIs giving up on him with meds. Now, here we are, a year later and feeling great.
There is obviously a reason for all the trials popping up. In fact the Children's Hospital my son is seen at, would't consider FT as an option a year ago. Now, they are starting a trial, using it for cdiff.
If I were to give one big piece of advice, it would be to focus on using FT as adjunctive therapy. FT will be much more successful when your inflammation is under control. Many people do FT while on pred for this reason. You need to allow the good stuff to penatrate deep into the tissue. Inflammation won't allow deep penetration, only superficial and not good enough to impact deep disease.
If you buy into the infection theory, it could take several years to eradicate such infection....like with TB. That said, this therapy and others need to be a long term committment.
Good luck to all, stay positive. I don't plan on spending too much time on HW. Keep an eye out for an upcoming med publishing that will talk about a pediatic patient with UC and Cdiff, using FT successfully:)