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?
What percentage recovered are you?
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?
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.