Our Fecal Transplant Experience

Discuss autism diets and biomedical treatments of autism.

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dredies
Posts: 1
Joined: Tue Dec 20, 2011 4:56 pm

Re: Our Fecal Transplant Experience

Postby dredies » Tue Dec 20, 2011 5:09 pm

I am very interested in your experience. I began thinking of fecal transplant as a therapy for autism after watching a program discussing the possible causality between gut flora and autism (http://www.cbc.ca/natureofthings/episod ... nigma.html) and reading about fecal transplant for c dificile in Scientific American (http://www.scientificamerican.com/artic ... ping-germs)

I subsequently contacted Dr. Sydney Finegold and received the following response:
I think fecal transplant may well work in
autism, but there have been no trials. People doing fecal transplants
like to have a close relative as a donor because they are much less
likely to have dangerous viruses such as HIV and hepatitis viruses.

People are working on making a "synthetic" stool made by growing all
the bacteria separately and then mixing them together. This may be the
best answer, but it isn't ready yet.


Searching online brought me to your experience. Both of our boys (age 7 and 5) have been diagnosed with mild autism. I have not been diagnosed but appear to have symptoms of Asperger's. We have not experienced severe bacterial problems, but do have irritable bowel syndrome and food sensitivities.

I look forward to reading more about your experience.

JeniB
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Joined: Thu Sep 04, 2008 10:10 pm

Re: Our Fecal Transplant Experience

Postby JeniB » Tue Dec 20, 2011 9:56 pm

I found (in the link provided) the one comment on roundup chemical causing a couple of new unknown bacterial species to be causing problems. My home is built on old farmland, anyone else's? There's this black fungus growing on our bushes, our deck and some in our bathroom. I also have copper pipes and notice it in our toilet. I also read in a mold book by Dr. Shoemaker about this same thing, heavily treated soils creating mutated bacteria and yeasts. Some feed off of copper sulfate. Could this be the "copper" link and "zinc" deficiency in some autistic kids? this stange new bacteria feeding off of the copper?
Jen
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JAG2MOM
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Re: Our Fecal Transplant Experience

Postby JAG2MOM » Tue Dec 20, 2011 11:22 pm

Our house is moldy too :( and our pipes copper. I started getting water from my inlaws (well water) and both kids copper came down with zinc met and nux vomica. They consistantly had really high copper prior to doing this.

How is your little one doing now? I would LOVE to have an answer to our bacterial/yeast problems. Both my guys suffer with bowel problems due to the near constant flares of one or the other.
Two Boys

dabaxter
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Joined: Wed Nov 14, 2007 12:50 pm

Re: Our Fecal Transplant Experience

Postby dabaxter » Thu Jan 26, 2012 10:39 pm

We did another fecal transplant yesterday at the doc's office. The second time was much easier. This time my son was awake and seemed to tolerate it well.
Today at school he had excessive uncontrollable laughter, suggestive of yeast, but not the brain fog or hand flapping you might expect.
After a BM tonight and seeing mucous and tentacles?, I suspect it caused some die off. We gave a big dose of GFSE this afternoon and that seemed to take care of it. We'll see what the days ahead show.
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notforsaken
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Joined: Sat May 21, 2005 5:35 pm

Re: Our Fecal Transplant Experience

Postby notforsaken » Fri Jan 27, 2012 9:06 am

You mentioned doing a round of NAC? WHats that?

notforsaken
Posts: 597
Joined: Sat May 21, 2005 5:35 pm

Re: Our Fecal Transplant Experience

Postby notforsaken » Fri Jan 27, 2012 9:17 am

Ok i thought i knew the answer. A few years ago we had a vitamin and antioxidant panel done on my son and they reccomended that 100 mg of the NAC be started. It said his glutathione was low and to use the NAC. This was done at Spectracell Labs. I actually wish i could another for him as an update.

hussaint
Posts: 1
Joined: Thu Apr 25, 2013 6:09 am

Re: Our Fecal Transplant Experience

Postby hussaint » Thu Apr 25, 2013 6:11 am

Hi dabaxter, _PLEASE_ provide a update summary on your observations / findings since your last post in Jan 2012.

dabaxter
Posts: 4052
Joined: Wed Nov 14, 2007 12:50 pm

Re: Our Fecal Transplant Experience

Postby dabaxter » Thu Apr 25, 2013 1:18 pm

We've done 2 of these. I do not feel that they made a huge impact for us. If I had to do it over again, I'd probably find a healthy infant or toddler, use their sample and give it via enema.
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JeniB
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Re: Our Fecal Transplant Experience

Postby JeniB » Thu Apr 25, 2013 2:52 pm

DB, questions

Did you do the bowel prep cleanout prior to having it done?
Did you use the immodium too?

I found a video about this doctor in VA stressing the importance of the "bowel prep" with proper cleanout and he mentioned using immodium to "hold it in". Do you think this made a difference in the treatment working better? or did you do these things too and it still didn't work?

I'm strongly considering this too and really would like all the details I can get. Thanks.

http://www.medscape.com/viewarticle/779307
Jen
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dabaxter
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Re: Our Fecal Transplant Experience

Postby dabaxter » Thu Apr 25, 2013 3:23 pm

JeniB wrote:Did you do the bowel prep cleanout prior to having it done?
Did you use the immodium too?

No. Keep in mind this was 2 years ago, when this was brand new and there were only a couple of docs doing this.

This is Dr. Russell's protocol(http://pediatrics.aappublications.org/c ... 126/1/e239), which our doc used:

Administer vancomycin (10 mg/kg orally every 6 h) during the preceding 4 d until the evening before the

procedure

Administer omeprazole (1 mg/kg

maximum: 20 mg ) on the evening before and morning of the
procedure

Place a nasogastric tube in the stomach and confirm its correct placement with an abdominal

radiograph immediately before bacteriotherapy

Obtain a donor stool sample 6 h before the procedure; the sample should weigh 30 g or have a volume

of

2 cm3
Add 50–70 mL of sterile saline to the stool sample and homogenize with a household blender for 2–4 min

until the sample is smooth

Filter the stool suspension twice with a paper coffee filter

Infuse 25 mL of fecal filtrate via the nasogastric tube

Flush the nasogastric tube with 15 mL saline and remove the tube

The patient is permitted to resume physical activities and a normal diet immediately after the procedure;

Lactobacillus rhamnosus

GG or other probiotic should be continued for 3–6 mo
Repeat the

C difficile toxin assay 2–4 wk after the procedure and subsequently if symptoms recur
Last edited by dabaxter on Thu Apr 25, 2013 4:36 pm, edited 1 time in total.
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dabaxter
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Re: Our Fecal Transplant Experience

Postby dabaxter » Thu Apr 25, 2013 3:28 pm

dabaxter wrote:We've done 2 of these. I do not feel that they made a huge impact for us. If I had to do it over again, I'd probably find a healthy infant or toddler, use their sample and give it via enema.


I need to clarify this. This did not have major behavioral impacts. However, we don't have diarrhea problems much ever now either. Also, take into account we've been on the GAPS diet for 2-1/2 years too.
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ninibaba
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Joined: Wed Apr 24, 2013 10:49 pm

Re: Our Fecal Transplant Experience

Postby ninibaba » Sat Apr 27, 2013 9:34 am

dabaxter wrote:Today at school he had excessive uncontrollable laughter, suggestive of yeast, but not the brain fog or hand flapping you might expect.
After a BM tonight and seeing mucous and tentacles?, I suspect it caused some die off. We gave a big dose of GFSE this afternoon and that seemed to take care of it. We'll see what the days ahead show.


hi,dabaxter. Maybe it was not a good idea using GFSE right after the transplant. it might have killed the good flora you just get in his gut.

Yun
DD 3.10yo, 50rounds of AC chelation

momof6
Posts: 263
Joined: Sun Aug 05, 2012 12:37 pm

Re: Our Fecal Transplant Experience

Postby momof6 » Sat Apr 27, 2013 1:35 pm

Dabaxter, have you done a repeat OAT since then? Just curious if your son's clostridium and yeast are still down. It looks like Conor's clostridium & yeast are at least twice the levels of your son's highest that you posted.

JeniB, I'm considering this too because I know Conor's poor flora is all messed up after 20++ rounds of antibiotics (as a baby & toddler) d/t chronic ear infections with no probiotics, etc. I'm wondering what makes more sense to do first...a biofilm protocol or a fecal transplant?

dabaxter
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Joined: Wed Nov 14, 2007 12:50 pm

Re: Our Fecal Transplant Experience

Postby dabaxter » Tue Apr 30, 2013 11:10 am

ninibaba wrote:
dabaxter wrote:Today at school he had excessive uncontrollable laughter, suggestive of yeast, but not the brain fog or hand flapping you might expect.
After a BM tonight and seeing mucous and tentacles?, I suspect it caused some die off. We gave a big dose of GFSE this afternoon and that seemed to take care of it. We'll see what the days ahead show.


hi,dabaxter. Maybe it was not a good idea using GFSE right after the transplant. it might have killed the good flora you just get in his gut.

Yun
DD 3.10yo, 50rounds of AC chelation


This was the second one, not the first one. Remember, 24 hours later the implant stool is gone from the system. I doubt the single dose of GFSE got down into the colon, so it probably had very little impact. If I recall, the doc at the time said go ahead, no big deal.
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ninibaba
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Re: Our Fecal Transplant Experience

Postby ninibaba » Tue Apr 30, 2013 3:58 pm

hi,dabaxter, thank you so much for sharing your experience and your thoughts.

plz dont take this as an offense, i 'm just trying hard to figure out how to do it.

yes the stool was out, but you do want the good bacteria to remain.
perhaps the laughter was just yeast struggling when being pushed out by the good bacteria, like the reaction you'd expect when using probiotic or cytoflora to control yeast.
and perhaps the single large dose of GFSE did get to the colon since it clearly took care of the yeast symptom?

any thoughts? thank you again.

dabaxter
Posts: 4052
Joined: Wed Nov 14, 2007 12:50 pm

Re: Our Fecal Transplant Experience

Postby dabaxter » Wed May 01, 2013 9:45 am

ninibaba wrote:perhaps the laughter was just yeast struggling when being pushed out by the good bacteria, like the reaction you'd expect when using probiotic or cytoflora to control yeast.
and perhaps the single large dose of GFSE did get to the colon since it clearly took care of the yeast symptom?


I highly doubt it. Yeast can be anywhere from the mouth to the anus. It was likely from the sample itself.
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JeniB
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Re: Our Fecal Transplant Experience

Postby JeniB » Wed May 01, 2013 10:23 am

DB did they test the donor prior for yeast? I actually think, that the main reason of the success of the other was more about using the medication to "hold it in" for 3 days after AND the total cleanout, AND the alinia. Have you thought about maybe changing the approach? I also think dropping the supplements completely, and giving it time, is also best to do. It is hard for us, because you and I both have seen these behaviors go away with GSE! I hate regressions, but I think if you do this again, maybe change it up and follow this procedure to the T. She dropped all herbs and other things (or it was instructed on the bowel prep). Clear fluids (no red/orange dyes) was also part of the bowel prep for an entire 24 hours. Probably some of the things our doctors aren't thinking of. I honestly think many don't want recoveries to be this easy. Sounds mean, but you can find other GI doctors using immodium as well and the bowel prep that I don't think DAN doctors are using, I can't remember who did yours though, was it a GI too? I don't know, but I feel that the way this was done, was a bit more successful because of the logic behind it, keeping the stool specimen IN and not killing anything good that might be in this healthy person's stool, giving it time to work, without all the other junk we give our kids. This, I have to admit would be hard for me to do! I also think as young as a donor as possible would be good, if you can find a healthy kid in your family! this is a struggle, I do have one child in our family that is "well rounded" and mentally alert...she has some things I question, because I know too much, like her spine is a bit curved, but she has pretty healthy digestion, can eat sweets and no ill effects from it that we can tell. Good skin, doing well academically, socially. I think the big challenge is finding the healthy donor. Really, our families are passing these gut bugs around. My in-laws have crohn's, diverticulitis, alzheimers...my mom, I KNOW has undiagnosed h. pylori. She can't eat now without being sick during a meal. Burning stomach. She'll never treat it though. That's my family for ya!

here's a youtube video of one doctor who is having success. he also mentions "bowel prep" and immodium.
http://www.medscape.com/viewarticle/779307
Jen
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klp834
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Re: Our Fecal Transplant Experience

Postby klp834 » Wed May 01, 2013 2:14 pm

Jen can you repost the youtube link? The one you put up doesn't look like the right one...

Thanks!

dabaxter
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Joined: Wed Nov 14, 2007 12:50 pm

Re: Our Fecal Transplant Experience

Postby dabaxter » Fri May 03, 2013 2:17 pm

JeniB wrote:DB did they test the donor prior for yeast?
Have you thought about maybe changing the approach?


The donor was tested the first time. The second time, I just got another sample. I had to talk the DAN I was working with to do it for me. I doubt you'll find a GI doc to ever do this procedure.

I don't have any plans to do another one. I believe that probably, more metals need to be removed.
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Mayzoo
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Re: Our Fecal Transplant Experience

Postby Mayzoo » Fri May 03, 2013 5:48 pm

dabaxter wrote:
JeniB wrote:DB did they test the donor prior for yeast?
Have you thought about maybe changing the approach?


The donor was tested the first time. The second time, I just got another sample. I had to talk the DAN I was working with to do it for me. I doubt you'll find a GI doc to ever do this procedure.

I don't have any plans to do another one. I believe that probably, more metals need to be removed.



It is a valid medscape link, but if you do not have a medscape account, you cannot view it. You can search "Fecal Transplantation for C difficile: A How-To Guide" on you tube and many links come up, but not the same one.
DD 2002. PANDAS, Autism, ACMI, AC, Syrigiomylia, BL Strabismus, and Torticollis.


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