Searching for physician to perform fecal transplant for 16 yo

Does anyone know of any medical centers in the 48 states and Toronto area that would perform FT for our 16 year old son who has been diagnosed with severe UC (pancolotis)?

Steroids and Pentasa were tried initially and were ineffective, and 3 infusions of Remicade have been only somewhat successful. He was diagnosed with UC following a C Diff infection in 10/12. He currently tests C Diff negative.

We are already aware of Mark Davis in Portland, as well as the possibility for doing the procedure at home , following Dr. Borody's protocol. We are looking for more options that would be medically supervised.

Thank you so much for any direction you might offer! We are trying to explore every option before considering surgery.

They will do it at Boston Children's hospital. Contact Dr Michael Dockter there. They've done about 5 so far. Good luck!
Btw, are you in Toronto? I am and we have a lot of experience with FT. You won't find a Dr in Canada who will do this for you tough our GI (who may be the same as yours?) supported us doing it at home. Feel free to email me if you want to exchange notes. If you go to Boston (we were set to go last year but decided not to at the last minute due to my daughter's health at that time) we calculated it would cost us about $15 000 out of pocket (including hotel).

Wow, Killcolitis, thank you!!!
We will definitely contact him. We are in the southeast US and are willing to travel, so included Toronto in our search criteria. Boston would not be bad for us at all.
I will email as we discuss this and questions arise, thank you! The cost would be a deterrent, of course, but worth looking in to...

Thank you so much and I will post our progress in this area if anyone is interested.

Isn't there a clinic trial for FT in the GTA?

Formyson-

Sorry for mu post I now see that you said you were aware of the at home procedure and that you wanted a more medical approach-

Killcolitis is a wealth of knowledge- chat with her

Is your son better than when he started the remicade? Is he able to attend school?

I am so sorry that another mom is dealing with this disease with their precious children-
it is so awful.

Yes my daughter has remained fairly stable on 6-MP for almost 3 years- we also use Cortenemas as needed
lots of VSL#3 and some diet control but not much. I think about this constantly and it is never far from my brain and I am always managing it daily.
Worried sick all the time about what is next

Please keep us updated on your son and what you decide-
Best of luck to you both

There is a clinic in Oregon that specializes purely in FT and has a website with details and prices- and it even provides screened donors- I believe the cost starts at several thousand including room and board in a relaxed, health spa type setting. This was posted not that long ago but it's late and I dont have time to search, but hopefully someone will chime in.

I have looked into an alternative health clinic for fecal transplants in the UK, only because there are no hospital options in our country. I only mention it to you because I came across this very interesting blog from one of their first UC FMT patients:
/thehealthyhorse.wordpress.com/

The blog has convinced me that the DIY approach at home is as good as going to one of these clinics. They don't have any track record of success, don't use antibiotics as a cleanout and tend to use the standard enema approach because they cannot do colonoscopies.

I would love to have FMT at a proper hospital, but it would mean travelling halfway across the world and paying for my treatment. So I'm doing at home instead with my daughter as a donor. It isn't particularly complicated (just time consuming) and there are dozens of people who have written about it on the web. I have done 3 FMTs over the course of 8 days so far and have gone from very bad/watery diarrhea, pain and lots of blood to fewer bowel movements, slightly improved stool, NO pain and just tiny traces of blood. Too early to say whether I'll improve from here, but I'm certainly starting to feel optimistic.

Check out the list of FMT Clinics on The Power of Poo blog.

I thought I would update this for the record in hopes of helping those who are searching for their own children. 

We have just heard from our GI that Boston cannot take our son at this time.  They are doing the procedure experimentally, but only for kids in the Boston area.  A larger clinical trial is possibly down the line.  I am devastated, but we are continuing to contact other centers and are not giving up.  Our son's UC is so severe and extensive that we really want to pursue the colonoscopy procedure vs. enema if at all possible.

So for those of you with children in the Boston area, I hope this is helpful.

Thank you so much IBDISTHEPITS. That means so much to me. I have had a good cry and am dusting myself off and doing what we moms have to do for our sick kids, right!?

He is actually doing a bit better this week..... Interestingly, we asked our GI to please let us try some Diflucan while we wait around for our next Remi infusion and have his Remi levels drawn. (that will give us lots of answers as to what we need to do next and we are at a stand still until then). She agreed, and we have actually seen a modest, but what we think is possibly a real, improvement - a small yet relatively consistent improvement in both consistency and frequency. So, his symptoms are at least aggravated by yeast overgrowth, perhaps. We are doing the dietary modifications and some supplements for yeast now that we see he might have a connection (?). I will likely write a post about this once I see that the trend is continuing.

How is your daughter?? It helps SO much to have others who know exactly where we are at.

Aw, thanks, somedude! We don't qualify based on age and severity of diagnosis. BUT we are still contacting places that have done the procedure to see if we can find someone to do it. We are not giving up! My DH is in the medical field and he is not afraid to contact anyone

How exciting you are in the Ontario trial! I do hope this works for you. I assume you are documenting your experience on the clinical trial thread here?

Thanks, Somedude. I really need to make a signature so people know his history, sorry!.....

He is on Remi for 3 infusions now and the results have not been what anyone had hoped - still 8-10 bm a day (although yes that is still improvement), still way underweight, pain, you know the story....None of us are willing to add 6-MP to Remi. We are working with diet and supplements and feel we are trying everything. We are about to add Mesalamine back in but are not very hopeful it will push him over the edge. But you never know! After two weeks of adding Mesalamine we are going to try LDN. We are also working with yeast and currently on Diflucan. AS you can see, our GI is great with letting us think outside the box as needed.

So, we are measuring levels at his next infusion, as well as testing for antibodies against the Remi and will take it from there.

I do hope the FT does it for you! Will watch for your update at the end.

He was started at 5. Second dose 7.5 and third dose we went to the max dose. Still 8-10bm most days which is why they want to measure levels and antibodies to see what on earth is happening. We have never gone more than 5 weeks between doses I believe. We won't give up!! THanks, somedude.