If you have a sick child, you will know how difficult it is to make decisions on their behalf, particularly once the mainstream medical system has given up on them. You are terrified to try alternative treatments, and you are terrified not to.
This heart-wrenching FMT success story is told by the parents of three year old “Robby” diagnosed with severe ulcerative colitis, small bowel disease, eosinophilic esophagitis and autism.
What percentage recovery has Robby achieved?
Our son is currently 90% better.
How many FMT treatments did he need to achieve this?
We initially did five FMTs via enema, under the guidance of our doctor. But every time we tried to wean down on steroids (prednisolone) Robby would begin reacting to food, not be able to sleep and would get rash on his face. These were normal symptoms of his UC flares. So we contacted the doctor who recommended trying FMT 2-3 times per week at home. We organized this and did a total of 17 frozen FMTs at home. Again, Robby’s condition improved. However he was still flaring when we reduced steroids, not as bad as before but it was still a problem. We contacted the doctor again and he suggested trying fresh FMTs. So we organized this and did fresh FMT daily for 30 days. We have now passed 30 and are at the 45 day mark, doing FMTs daily.
Did he have antibiotics before FMT?
How long did it take to see a result?
We saw results that the FMT was working within 2 weeks of the first 5 treatments. There was an initial die off period because we did not do antibiotics before the FMT, which was scary but manageable. Robby has been fully weaned off the prednisolone for 4 weeks as of today. We plan on doing FMT every other day for a minimum of 45 days then tapering ever so slowly after that.
What criteria did you use to choose a donor?
My partner became a donor based on testing recommended on the PoP website and we also did additional testing to assess overall health status – not just absence of disease. We had the FMT doctor, our local functional medicine doctor, our nutritionist and our biomedical doctor all review the tests and they agreed unanimously she would be an excellent donor.
Were there other perpetuating factors in the illness, or was bacterial imbalance the only issue?
The primary cause of Robby’s UC was heavy duty broad spectrum antibiotic used in Neonatal Intensive Care Unit when he was born prematurely, at 24 weeks. Unfortunately, the drugs that it took to save his life destroyed his gut. FMT is one part (a huge part) of a total recovery program for Robby.
What other therapies have you done in conjunction with FMT?
We are also doing TSO (helminthic therapy), Specific Carbohydrate Diet, gluten/casein/corn/soy free, low dose intravenous immunoglobulin and other supplements. Robby is not yet weaned off Entocort.
How and when did you first hear of FMT?
We had been researching FMT since Robby was 1.5 but could not find a doctor to help us. They had even refused to do a colonoscopy despite his horrific digestive symptoms, with the doctors saying he was acting that way because he was autistic. Since Robby has been treated for the severe UC he no longer acts “autistic”. He has gone from 124 on the AETC to 50 in less than 5 months. It took us 1.5 years to find a doctor who would agree to do a colonoscopy for him. Once we had the UC diagnosis we knew what we were battling and all we had to do was decide the treatment course we wanted to pursue. Then finally we found PoP. We studied and read extensively about FMT before making a final commitment. We joined the private FMT Facebook group and asked a lot of questions – bugged a lot of experienced people and got answers.
What did your doctors say?
Our biomedical doctor who initially did not want us to do this – is now totally on board with the idea. Our functional doctor was on board from the beginning. Our pediatric GI has mailed us our file and notes and asked us not to contact him since we refused 6MP and decided to start FMT. So he is obviously not a proponent of FMT.
What factors did you take into account when deciding to do FMT?
We felt like FMT was our only option and that we had to try it. We felt it was a much safer option than 6MP. We decided that even if the FMT did not work, we would always wonder if we had done all we could before starting him on a dangerous drug like 6MP without even trying other avenues for healing. Especially since our GI felt like the disease was a direct result of the antibiotics.
What was your FMT experience like?
After all the research we had done, when it came time to do the FMT preparation at home, it didn’t seem like such a horrible challenge. We set up a “FMT station” – and so far so good. Not even any funny stories. It has been smooth sailing. We were initially worried about compliance with such a small child. We did discover it is best by far to do FMT at bedtime, that way it stays in for a much longer period of time. Otherwise if Robby is awake and up he loses the FMT very quickly. He likes getting his favorite iPhone game when we do the treatment and he is used to the routine. The catheter is incredibly small and doesn’t hurt.
What has been your darkest moment throughout the illness? What sustained you throughout?
Our darkest moments were sheer exhaustion from trying to comfort a horribly ill child 24 hours a day. He was in such pain he couldn’t sleep and his screams were horrible. We even recorded it so the doctors would hear what we were describing. Still they wouldn’t give him a colonoscopy. He had hundreds of sores on his skin from the leaky gut. He couldn’t eat. He couldn’t be sat down even for a minute. He was terrified of what was hurting him. He couldn’t talk to us about his pain and the doctors wouldn’t listen. When we finally found doctors who could help and did listen – we finally began his journey to healing. We felt instant relief. We knew he was going to get better – he certainly couldn’t get worse. Our darkest hour lasted for a year and a half. During that time we began to doubt if we had done the right thing – saving his life in the NICU. Was he ever going to get the help he needed? Was he ever going to talk? Would he ever not be in pain? Was he ever going to be able to laugh? The pain was so intense he used to gouge at his own eyes.
What are the top 3 things you most enjoy about your post-FMT life?
Now Robby talks. He laughs. He plays with his toys. He eats. He is up to 17 safe foods right now (he had zero safe foods and was nearing a nasogastric tube before FMT). He told me he loved me and kissed me for the first time about 2 weeks ago. I sobbed. I knew then that we had made the right choices.
What advice do you have for someone trying to make a decision about FMT?
With the right information, the right tools, the right thoroughly tested donor – FMT is profoundly safer than the drugs mainstream medicine wants to prescribe for GI conditions. It tackles the root cause – unlike a drug designed to shut down the immune system and mask the actual problem. If you or your child has a severe GI disorder, we urge you to take your health and the health of your child into your own hands, and find a supportive doctor. Our system is not designed to cure people. It is profoundly broken system driven by corporate profits. If you want to heal yourself and / or improve your health you have to be the guiding force through research, research and more research. Don’t let geography get in your way. Travel wherever necessary to get the right care. We have had to downsize our home three times, sell jewelry, borrow money, fly miles away from family, and stay in Ronald McDonald houses. This got us to the doctors that are on the cutting edge and are not buying into the “for profit” medical system and who are willing to find real answers to horrific disease that are ruining the lives of people and children. We wish you health and happiness!
Editor’s Note: PoP does not recommend FMT without medical supervision, particularly for children. Please do NOT risk untested or unsupervised FMT on your child as you could make a bad situation worse. Instead, arm yourself with research and talk to your doctor about FMT as the next option in your care plan. If they are dismissive without reason, then go find a doctor who will discuss the issues logically and with respect. If you are located in the US please note that doctors are not permitted to deliver FMT for conditions other than C diff, but this does not stop them advising you on how to do home FMT safely.