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05-15-2017, 12:37 PM   #1
Sudsy
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Location: Israel
Fecal Transplant?

Has your child had one at a major medical center (or not so major a medical center, but not one at home with "Dr. Mom" as the medical director)?

My dd was scheduled for one tomorrow and then her GI called this morning to say that the Hospital did not approve for her to do the procedure, they only use for C Diff. Then she called another doc at a different hospital who is doing a research study about this and he told her that he has two patients in his study who got SEPSIS from the transplant, and he'll accept my dd into his study but "only if the parents really want".....

So confused right now. My research online (and I'm a RN) shows that most people don't have major reactions to these transplants. We really had high hopes for this to help dd, who is at a high dose of Remicade every four weeks.

Would love to hear if people had, where they had, and how it worked. Thanks.
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19 y/o dd dx'ed with Crohn's at age 8.

14 y/o dd dx'ed with Crohn's at age 7

11 y/o dd with Celiac just to keep things interesting around here....
05-15-2017, 01:17 PM   #2
Maya142
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We have discussed it for my daughter, but only because she has gotten CDiff twice. My daughter's GI said they haven't had any success with it for IBD yet, so are only using it for CDiff (this is at a major Children's Hospital).

We were not told about major side effects like sepsis from the procedure - YIKES. We were told that the side effects are unknown - there have been some people who have developed other conditions from fecal transplants.

For example, our GI told us about a man who had fecal transplant for CDiff (no other conditions). His donor had arthritis, and after the transplant, the man developed arthritis.

That kind of scared us, though if my daughter had CDiff again, we would probably do one.

I think Kimmidwife's daughter had one, so I will tag her.

I think if you post on the adult forum, you might have more luck - they are using them more for adults than kids.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
05-15-2017, 09:50 PM   #3
kimmidwife
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Hi my daughter did have one for recurring CDiff. It worked great for it but did not help her Crohn's disease. I have never heard of anyone getting sepsis form it and I am a retired nurse practitioner and did a ton of research before agreeing to it. Our doctor has done a bunch of them on kids who have had transplants and then developed CDiff and I don't think if there was a strong risk of sepsis that they would have allowed the kids to do it.
We got the transp,ant from Open Biome. I k ow they do very very extensive screening of their donors which made us feel every about it.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
05-17-2017, 02:12 PM   #4
Sudsy
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Very interesting and helpful. My thanks to both of you!

The dr doing the research asked our GI doctor why we wanted her to get a fecal transplant if there was such a risk possibly associated with it. I said that he should publish his research already b/c, as far as I could find, there are no reported cases such as this....
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