Wwyd re: fecal transplants and autism

pastalady

Okay. My MIL is a quilter. She has been taking a class with a women who turns out to be a well known autism researcher. Long story short we now have the chance to be part of a research study about fecal transplants. I don't even have any details yet. But I am thinking no, based on a few things. DD is doing so well right now. We have been to,d numerous times now she may outgrow her diagnosis, but who knows? Tha main thing is her autism isn't really affecting a lot right now. Yes, she has obsessive interests and a love of routine. But meltdowns are non existent now and she is doing well socially. She doesn't have any delays anymore and has been given a gifted code. What she does have are issues with her gut. Not huge issues but she has always had a swollen belly. She is mostly gluten free now which helps but I still notice she kind of looks malnourished, with swollen tummy and stick legs, etc. like hungry children on tv somedays even when I think we have kept strict with the gluten. She poops every 2 to 3 days, but doesn't seem constipated. She eats a healthy varied diet. My husbands whole family has Celiacs. Also some more extreme wheat allergies in the family. Obviously I need to find out what exactly is involved but would you even consider this? Aside from the ick factor of the procedure, I'm just not sure. There are families willing to travel from Australia to Canada and pay all their own expenses to be part of this trial. And we would get in free right here in our own city. Any thoughts? I has never even heard of this until today!

pastalady

Thanks! I never thought about seeing if DH could qualify. I am assuming not as the email mentioned that DD fit the age. So, I just googled the doctor and yeah, red flags lol! He is the head of infectious disease at our university. But he does the procedures at people's home? Um, no lol! I have never heard of this before. Now I have to break to MIL that this wouldn't cure DD lol!

MaxandRuby

I cannot comment on the ASD stuff because I have no experience with that. I do have experience with gluten intolerance and have Celiac's myself.  Celiac has a heriditary portion to it so with such a strong prevalence on your husband's side, she could very well have Celiac's or be gluten sensitive (vs being intolerant).  If you are going to do gluten free it needs to be 100%.  The fact that you state she has issues with her gut would make me want to caution you to try full gluten free and not mostly gluten free.  If she has Celiac's, which could be a possibility, any gluten could cause gastrointestinal issues.  It could be hyptonia as Auntie suggested but it is possible she is having issues with gluten also....or both.

Good luck to you and have a great night!

kcisthebombdotcom

My daughter has celiac and it took months being 100% on the diet before her belly was no longer distended.

pastalady

I know this whole thing sounds quacky lol! What gives me pause is it is a legitimate trial by the university and infectious disease program at the university. I do think there seems to be a big gut component in autism but this is not for us.

I am now going to really focus on keeping DD gluten free. Her belly is not distended all the time. Its mostly when we suspect she has been glutened lol! For example we will get ice cream at the amusement park.We just do vanilla, no cookie type flavors but even ice cream can have gluten. A few hours later her belly is twice the size. So I will be vigilant. 

thefuturemrskudla

Pastalady, has your daughter been tested for celiac disease?

finsup

Am I the only one who is thinking "WTF is a fecal transplant?"  No disrespect intended OP, just I don't know what it is and frankly, I'm not going to google. 

st.augbride

Actually, fecal transplants are something that have been shown to be effective for certain conditions and are gaining momentum due to so much new research related to the impact of gut flora on, well, everything it seems lately. At the NIH, I know several trials are taking place with this approach for people with certain genetic conditions associated with infectious diseases. I recently sat in on a seminar discussing an ongoing protocol that is seeing success. Were there a lot of poop jokes among the researchers in the audience? Yes. But apparently there's something to it. They are having trouble recruiting healthy volunteers though, even among the money-desperate interns...

birdie_1010

As odd as this concept seems, I have read articles about fecal transplants being quite amazing. I know our local state university is doing a lot of work around using fecal transplants to help cure c. diff. I know a mom that is talking about doing fecal transplants in her daughter with severe ASD.  It seems WAY out there, but it does seem that this is kind of a big deal thing in the medical community as a whole right now.

MaxandRuby

pastalady said:

I know this whole thing sounds quacky lol! What gives me pause is it is a legitimate trial by the university and infectious disease program at the university. I do think there seems to be a big gut component in autism but this is not for us.

I am now going to really focus on keeping DD gluten free. Her belly is not distended all the time. Its mostly when we suspect she has been glutened lol! For example we will get ice cream at the amusement park.We just do vanilla, no cookie type flavors but even ice cream can have gluten. A few hours later her belly is twice the size. So I will be vigilant. 

Given the fact you seem to notice a correlation between her stomach and the possibility of her ingesting gluten you may want to walk down the path of testing for Celiac's.  There is a lot of "hidden gluten" in things too.  And just because vanilla ice cream in a cup (a cone will more then likely have gluten in it) may seem innocent, you can't say for sure that the scoop they used to scoop it with wasn't used in a different ice cream or put on a counter that had cookie crumbs or something on it...hence cross contamination.  :-( 

Good luck on going gluten free!  I am still learning the hidden glutens, reading labels, etc.  The more I find things I like and the more I get used to it the easier this diet is becoming...but it sure can be a PITA sometimes.

shawnsgirl06

Have you tried a high dose high quality probiotic supplement to help your daughter?  It would introduce healthy bacteria to her gut without the invasiveness of a research study fecal transplant.  We use a 30 billion a day dose of Vitazord or Zahler Kidophilus Plus probiotic for our son with autism and after a month we noticed a day and night difference he was unable to be potty trained for stool because it was so loose he wasn't able to feel anything and had many accidents a day a month latter he was using the potty, had a lot less gas, was eating less since his food stayed in him, and was generally happier and more alert.  Long term a year latter everything is good if we can remember to give him his three pills consistently every day otherwise his gut reverts very quickly.  I have also researched the fecal transplant there is a lot of scientific information available online you may choose to read.  I'm keeping an open mind and watching the research maybe in the future it will be a cure of the gut issues associated with Autism.  I am not trying to push product to you just providing the names because it is hard to find a chewable probiotic for children  in the 30 billion dose, the 2 billion ones available at the drug store are not nearly enough to help.

kcisthebombdotcom

Ditto the probiotics. They've helped my dd a lot. We use kefir as a natural source of probiotics.

pastalady

Yes, we have started a probiotic. Hopefully it will help. We haven't done the testing yet but are starting the gluten challenge the doctor recommended. We will see how it goes. Thanks for the info!

st.augbride

This is being featured on The Doctors right now. A mom whose 27 weeker developed severe c. diff infection at 12 months old did this to save her son. Apparently he's the youngest recipient of this and it helped him.