Sam’s Story

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fecal transplant for Autistic enterocolitis

 

Sam’s mother writes this story on behalf of her 7 year old son who has recovered from Inflammatory Bowel Disease – Autistic enterocolitis, using fecal transplant.

Where do you live?

Michigan, USA

What percentage recovered are you?

80%

What was your diagnosis and what treatments did you try before FMT?

Autism/ Inflammatory Bowel Disease – Autistic enterocolitis

When did you have your first and last FMT treatment?

First Treatment July 2014.  Still having treatments.  2 per week

How many FMT treatments did you need to see initial results and  the results you have today?

Started every day for 5 days, then every other day, now twice a week

Were there other perpetuating factors in your illness or illnesses, or was bacterial imbalance the only problem?

Dysbiosis (yeast, clostridia, fungus); Leaky gut; many food intolerances.Does your condition require any ongoing maintenance to keep it in remission eg diet, supplements, medication? Yes.  Gluten, dairy, soy, egg, refined sugar, dye free.  Considering Gaps for dysbiosis.  Multiple supplements and some immune suppressants but able to get off prednisilone with transplants.

How and when did you first hear of FMT?

Biomed Doctor Scott Smith mentioned them 2 years ago.  Attended a seminar Autism one conference on fecal transplants may 2014.  Found Dr. Shepard and learned the process in July 2014.

What factors did you take into account when deciding to do FMT?

Risk versus benefit

What did your doctor/s say?

Our biomed and GI doc supported us

What criteria did you use to choose a donor?

Genetic – his father.  Blood, urine and stool tests and screening set up by Dr. Shepard.

Did you use antibiotics before your FMT?

Yes.  Vancomycin.

What was your FMT experience like?

Flu-like.  Vomited once and warm belly.

What was your darkest moment when you were ill?

Our son would spend every morning crying and every night crying to sleep.  He is now mostly a happy boy.  Have been able to keep flares at bay and he is so much more aware.  He is mostly pain free and just happy for once in his life.

What sustained you throughout?

What are the top 3 things you most enjoy about your post-FMT life? 1. pain-free  2.  happy 3.  more interactive

What advice do you have for others to deal with the fear and (perceived) risk about FMT, in the face of scepticism from treating doctors, friends and family?

The risk of the meds our son was on to maintain his remission far outweighed the risks of this procedure

What advice do you have for someone trying to make a decision about FMT?

Think about the quality of life you have and the possibility of feeling better with something that is in essence natural for your body versus the drugs that are pumped, which can cause a myriad of issues such as cancer, infection, etc. Once you get over the “ick” factor, it is one of the best decisions we have made for our son.  He is more alert, happy, attentive, physically touching us and seeking comfort, communicating better, tantrums have all dissolved, more engaged, sleeping better.  Many of his autistic symptoms have diminished and some have completely dissipated.

 

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Categories: fecal microbiota transplant

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11 replies »

  1. Hi-I’m so happy for your son and you also. I have colitis-clostrial and fungus related. Every time you do fmt through colonoscopy are you doing prep first to clean out or just before bed/morning? Thank you!

  2. Anthony,
    Thank you! We do not do or have not done the FMT’s through a colonoscopy. We perform home FMT’s. We did a prep before we went to see Dr. Shepard in July. We learned how to perform these FMT’s while there. They have all been performed as retention enemas as well as swallowing capsules. We do not do preps for maintenance FMT’s at home. We do the FMT’s whenever our donor has his stool ready so that could be any time of day and my son generally retains them for about a day before having a bowel movement.

  3. Hi SAMs mom!

    I didn’t realize you wrote back sorry! Can I ask what the prep was that was done? Was it vanco? I had success at first but only did it twice and stopped and since have backtracked still having food allergies, the Gi upset, skin rashes (seb derm) and fatigue. I hope your son is better! Thank you for your story!

  4. We did do 10 days of Vanco and then cleared him out with mirilax the day before the first FMT. My son is doing so much better. We are not fully recovered yet, but the difference between then and now is truly remarkable and we were able to take him off prednisilone which was a huge success for us.

  5. Hello – I have a 9 yr old son with a very similar story to yours – is there any way that I can contact you?

  6. Dr. Shepard, can you please give us his contact so we can contact him too?! We live MI, also.

  7. Landen’s mom…are you on Facebook?

  8. Sam’s Mom, Great story. My Fiance is in a year long battle.

    May I contact you on facebook or LinkedIn about minor details, we are very intrigued and willing to try anything since all conventional Rx has failed us.

    Thank you,

    Frank

  9. To discuss FMT with others, please joint the Facebook FMT Discussion group http://thepowerofpoop.com/fecal-transplant-facebook-group/

  10. Hi Sam’s Mom,

    I’m reaching out to ask if you’d be willing to speak with me for a story I’m writing about FMT. Using FMT to treat autism is still fairly uncommon, and I’d love to communicate how it works from the perspective of someone who’s gone through it successfully. If you’re up for it, shoot me an email at or give me a call at 416-386-2756.

    All the best,
    Catherine

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