Fecal Microbiota Transplant

[sibhuskyblue]

My son was diagnosed with Crohns at age 3. He is now 6. He has been on Azathioprine since his diagnoses.They want to switch him to Remicade. I am not sure if this is the way we want to go. My husband and I have thought about the poop transplant option, but being so new not sure if this is viable. I hate giving him meds and damaging his little body further. Any thoughts on this? Has anyone tried the transplant or know of any one who has? Any thoughts on Remicade for a 6 year old? thank you!

 

[Farmwife]

Hi and welcome.

I do know Grace's GI is one of the few that is studying Fecal Transplants in children but this is for c diff at this point.

I know I've read mix reviews about doing this. Sorry not to much more to add as I don't now much about it.

I will say on the med front.
My Grace is five and is on Humira and MTX shots. She was dx at three almost four.
As much as I hate these drugs, I know the IBD not treated correctly can cause a lot more damage then the drugs. Children as you probably know tend to have a more aggressive form. Again I hate these drugs but am so thankful that theirs drug to hold off the damage.

Please ask as many question and I hope your child is doing better in the furture.

 

[my little penguin]

DS was started on remicade at age 8.
He was dx at age 7.
It was very hard since we were told it was for life etc.....
It was a wonder drug for DS and let him be normal again .
He did have an allergic reaction ( minor) after 8 months ( so much for life stuff)
He grew gained weight could play like a normal kid unlike 6-mp which didn't help much -went to his liver and Mtx which didn't help at all.
Biologics may seem scary but when they work they work well and you forget your kiddo has crohn's - no damage done for my kiddo
He is on humira now
Love it - too a bit longer to work than remicade but still.

We go with what can keep him healthy now and hope for better drugs later.


Good luck

 

[CrohnsKidMom]

Welcome to the forum! My 9 yo son was dx'd last yr at age 8. He is currently on MTX injections. Sorry, I have no experience with Remicade or the fecal transplant. I have to admit, the fecal transplant freaks me out a little, but I'm willing to keep an open mind...
All the best to you. I hope you get the info you need to make the best decision for your boy.

 

[zilla7777]

I understand how you feel with the hesitance to go on Remicade. I've seen the safety and efficacy profiles and they just aren't enough to convince me to go onto them.

Is the Azathioprine still working for him? I turned out to be non responsive to aza, so I've been exploring the other options.

A few docs around the world are also looking at antibiotic therapy to induce remission, as there is a theory that a bug called MAP could be at least part of the issue. Maybe that is worth a look into as well.

 

[Farmwife]

I understand how you feel with the hesitance to go on Remicade. I've seen the safety and efficacy profiles and they just aren't enough to convince me to go onto them.

Is the Azathioprine still working for him? I turned out to be non responsive to aza, so I've been exploring the other options.

A few docs around the world are also looking at antibiotic therapy to induce remission, as there is a theory that a bug called MAP could be at least part of the issue. Maybe that is worth a look into as well.

zilla that's might be true about Remicade in your opinion BUT for us parents we have the added burden of not only dealing with Ibd that tends to be more severe in children but also the burden of growth and puberty.
As mom I have to take in consideration what the disease will do to the body of my child verses what the side effects will do.
Again theirs no right or wrong answer. Theirs no perfect treatment. All we can do is the best we can with the information given us.

Hugs

 

[sibhuskyblue]

Thanks all for your advice! Kolsen's GI doesn't think the azathioprine is working for him anymore since his weight has remained the same for 3 years and his height hasn't increased that much. It's just a hard decision to switch to such a powerful drug and feel confident that you are doing right by your child. I know azathioprine has the similar risks, but the remicade scares me a bit more. We are having scopes in the next 2 weeks and then they will change him over. Again if anyone else has comments on the remicade, keep them coming. Thanks again!!

 

[zilla7777]

Farmwife,

I entirely agree with you. It's dependent on the circumstances in which you decide what treatments to undergo. I'm sure I'd take them if other treatments I feel are better for me don't work.

Also, not meaning to attack but I had Crohn's through puberty too ale:

Hope for the best with Gracie!

 

[Mehita]

I think doing scopes is a good idea, though I wonder if he's not growing because there may be something going on in the small intestine which would require a pill cam or MRE to see what's going on there.

My son had low, simmering inflammation in his small intestine. Growth stopped. He tried Azathioprine but it acted like a placebo for him and he kept flaring. He's been on Remicade since November and has been in remission since January. I wish we would have switched him sooner! It's been his wonder drug. He's happy, growing, and living a normal life again. Aside from his infusion every eight weeks, you'd never know he has Crohn's. The other thing he likes about Remicade is that it's just once every eight weeks. No daily meds to remember. That was a huge plus for him.

I'm going to tag Jmrogers. Her son had growth issues as well.

 

[crohnsinct]

Another IV leaguer here. My daughter was dx'd at 12 and in very serious condition. The only option presented to us was Remicade so I took it. Yes, it scared the heck out of me but I am here 2 years later to tell you she has grown 5 inches and gained 30 pounds and has not had one flare since. As far as a suppressed immune system...she is the healthiest person in the family. Hasn't missed a day of school since dx. She is a competitive swimmer and runner and she is on top of her game. I shutter to remember the kid she was when she was sick so we love Remicade.

Yes there are risks and probably even risks we are not aware of yet but most risks are manageable and the super scary ones are very rare. There is a very good presentation about the risks that we cite here often (I will try to link it). Yes, Remicade triples the risk of some scary cancer but the risk for a non biologic user is 2 in 10,000 so the real risk is now 6 in 10,000. The risk of a child dying in a car accident is 1 in 260 and I do that every day...even put her in the car with teen drivers:eek2: Heck the biggest risk of Remicade is my hour and fifteen minute drive to and from the hospital! It all boils down to risk and reward for us. After seeing what unmanaged disease did to my daughter and that is a given, I am comfortable with the risks.

Here is t he webcast. I read it whenever I get skitchy about the drugs and it helps me. I hope it helps you with your decision. Good luck with the scopes!

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

 

[kiny]

I'm sceptical of this for crohn's disease. The bacterial load is much higher in the colon than in the small intestine. While there is dysbiosis in crohn's disease, an unbalance or shift in bacterial population, this happens in many many intestinal diseases. If you believe in FT you believe the dysbiosis is behind the inflammation, while in every other disease so far, dysbiosis is a result of intestinal inflammation and is not the cause behind the inflammation. There is dysbiosis in intestinal tuberculosis of the small intestine, but people would call you crazy if you treated intestinal tuberculosis with a fecal transplant. Then there's the fact NOD2 / ATG16L1 / IRGM are involved in intracellular control of pathogens, not gut flora, there's the fact CD8+ T cells are involved in crohn's disease, which are cytotoxic to cells, not gut flora. There's the fact inflammation in crohn's disease is transmural. There's the fact inflammation in crohn's disease is patchy.

There is a whole laundry list of reasons why I"m very sceptical about FT. FT is I feel also wrongly portrayed in the media...."you just add good bugs"...when you take probiotics or when people do a fecal transplant, massive amounts of cytokine and inflammatory protein can be measured in the bloodstream, thousands of those bacteria die off and a whole chain reaction of events happens. It is not as simple or wonderful as the media portrays. Many probiotic strains have warning labels that they should never be used on an immunocompromised person.

If you give a FT to treat crohn's disease you are making a leap of faith. The faith that dysbiosis is behind the inflammation..no one knows..many people argue it's not, and the faith that whatever you're giving this person (only a small percentage of the gut flora is known so far)...is actually going to help that person and not make the dissease worse. It's a leap of faith I as a crohn's disease person refuse to make, I do not think there is enough data or reason to believe this is without risks.

 

[kimmidwife]

I just wanted to welcome you to the forum and send you a hug. These choices are scary for our kids but the long term effects of untreated crohns can be scary too. I know whatever you decide you will be doing the best thing you can for your son. You may want to go over to the treatment section and read about the different things available to discuss with your doctor. There is another drug called Low dose naltrexone (LDN) which for us was our miracle. It is not recommended by a lot of doctors because it is generic and there is no big money behind it pushing for studies to be done like some of these other drugs. Like I said go to the front page of the forum and scroll to the treatment section read through it and then if you have any questions let us know!