From birth, our son suffered from chronic constipation, acid reflux, and food sensitivities despite being exclusively breastfed for one year(and myself going through an elimination while nursing). Our son also suffered from impaired speech, and severe food aversions. At the age of18 months, it became clear that he had speech/language delays, sensory processing disorder, fine motor delays. We persevered through many therapies with only modest gains. At age 2 he received a diagnosis of Global Developmental Delay, and at the age of 4 we received an Autism Spectrum Disorder diagnosis from Fraser. Through this journey, one thing stayed constant: gastrointestinal distress.
Unfortunately, with an Autism diagnosis, the GI disorders are just considered to be an associated diagnosis, without any understood root cause. We would hear, “Your son has constipation, loose stools, bloated stomach? Oh this is just part of Autism.” And unfortunately, when these GI symptoms got worse, our son’s behaviors became exponentially worse. At one point, he was having over 80 aggressive behaviors per day at his behavior therapy program, and it was no coincidence that it would be when he was going through a bout of constipation. We specifically held off on potty training because of the inconsistencies of his BMs. And alternatively, when he was on a stretch of GI stability, his hyperactivity and agitation was at a low.
There was mounting evidence that there is a gut-brain relationship with ASD, and for this reason we began to target diet and GI health to improve behaviors. At age 4,we eliminated gluten and dairy from his diet (this transiently eliminated the loose bowel movements and reducing mucus in his stools), we introduced prebiotics and probiotics, which created regularity for a period of two weeks. These improvements were dramatic, but always short lived, but knew we were on the right track. There was an episode at the age of 3 where our son was treated with the antibiotic Augmentin for an infected toenail, a cloud lifted and he appeared “neurotypical” for a couple weeks, peaking my interest in how antibiotics could alter the microbiome. There was another instance where he had norovirus at the age of 4, and had vomiting and diarrhea for about 10 days. During this time, despite being ill, he was the most calm, compliant, and again “neurotypical” he had ever been. Something in his gut was triggering his ASD symptoms, something that the antibiotics and the bouts of diarrhea helped rid.
As a mother and a clinician, it was extremely difficult to see your child suffer developmentally, physically, and socially, seeing a clear link to GI distress but with no treatment option.
We turned to MTT (Microbiota Transplant Therapy) for a solution that could be maintained, in hopes to relieve his GI distress and associated behaviors.
Our son began MTT at the age of 6 through a compassionate care investigation new drug application in collaboration with Dr. Alex Khoruts and Dr. Ann Kelly. The process started with the antibiotic vancomycin to help “clear” the existing microbiome. We then did a bowel prep (similar to a colonoscopy) the day prior to starting MTT. The day of his bowel prep, after going to the toilet all day, he was again “neurotypical.”
Our protocol was high dose MTT(3-5 MTT caps) once daily on an empty stomach for the first week, then once weekly for 10 weeks. Dr. Khorut’s team was able to select a donor that high levels of Prevotella because of earlier findings indicating that children with ASD had lower or undetectable levels of this genus (which our son also had low levels at baseline stool sampling). Within one day, his stools were formed, very normal looking. This was something we had never seen with him, from birth. Fast forward to 2 years later, the GI issues remain in remission. He has very regular and healthy BMs to this day. The levels of Prevotella and microbiome diversity are still maintained to this day.
On top of the incredible GI benefits we saw, we saw tremendous behavioral gains. On October 10, 2019 we did his baseline behavioral assessments. On the The Social Responsiveness Scale, Second Edition (SRS-2) which is a parent report measure designed to aid in diagnosis of autism as well as treatment planning, our son scored to have severe autism, with a score of 87, anything above 75 is severe. The Childhood Autism Rating Scale, Second Edition - Standard Version (CARS2-ST) is an observation by a clinician to evaluate the presence of autism symptoms across fifteen category ratings. Our son scored 32.5 on the CARS observation, which fell into the moderate symptoms of ASD category.
One year after MTT, we did the same evaluations. For the SRS our son scored 61, which is in the mild range. Anything under 60 is considered within normal limits. He was one point from scoring within normal limits. On the CARS observation, he scored a 26, which is categorized as minimal-to-no symptoms of ASD.
We are now two years from MTT, our son has since left his full-time behavior therapy program to being in a mainstream 2nd grade classroom with some special education supports (he has some catching up to do). He is no longer lost in his own world, productively plays with his brother, cousins and friends. He has a “girlfriend” this summer. He has learned to ride a bike, swim, play soccer and baseball, tie his shoes, read at his grade level, write, tell stories. I would not say that our son has been cured of ASD, however he is at a place today we never would have dreamt. I do hope at some point, he could get his diagnosis removed. This research is groundbreaking. 1 in 38 children in MN have ASD, and I believe MTT is part of the puzzle of what could be a cure or discovering the cause of ASD. For this reason, more research is needed to allow more families to access this miraculous treatment.
N.M.
