Robby’s Story

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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?

No

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.

 

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Categories: autism, fecal microbiota transplant, ulcerative colitis

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9 replies »

  1. Recently in our clinic we had the chance to treat with FMTs a two year old patient with similar symptoms. She also had a profound dermatitis. Responded very well to 30 days of daily implants. Her diagnosis is Crohn´s and we have proposed the parents to continue doing FMTs for at least two years in a bimonthly frequency. This plan mimicks the one usually applyed with anti TNF drugs

  2. I am 34-years-old. I was diagnosed with severe UC two years ago (June 2012). I live in Australia and travel from Melbourne to see Prof. Thomas Borody in Sydney. He did 10 fresh FMTs for me in June 2014 and I have continued with 33 frozen FMTs at home. My experience has been excellent with 98% recovery, but it’s been gradual. I have improved with every additional FMT and I plan to use my girlfriend as a fresh donor twice a week for at least another year. My experience with FMT and UC is that it’s all about quantity – the more the better. I recent study I read administered one FMT per week for six weeks and reported no significant differences with placebo. In my opinion, that amount and frequency is no where near enough. Finally, it’s not at all difficult to do and any fears that I had regarding the so-called “yuck” factor were dismissed as soon as I administered my first FMT at home.

  3. Paul, your experience reflects what we are seeing in the facebook group. FMT for UC needs to be undertaken over a long period of time. Plus we are seeing better results in combination with anti-inflammatory diet and drug protocols.

  4. As a Naturopathic doctor for 13 years (ND., L.Ac.) who suddenly developed Crohns/ UC at age 56 I can only say that FMT is a ‘god-send’. I have spent the last year researching in depth about microbiotia, the virome, FMT, and attending conferences and doing my own DIY FMT and charting it. My confession is that had I not had to undergo FMT for myself I would not have realized How astonishing this treatment is. I had to seek a second Gastro given my first one had no solution for my unremitting anemia other than prednisone and initiating a protocol of biologics. My hematocrit was down to 18 (normal is 45) and my resting heart rate was climbing past 130-150 BPM. My subsequent GE did immediately authorized 4 transfusions and told me I would be on two at least two meds (Humira & Azathiopurine) for the rest of my life. With the transfusions came a period coherency that gave me the chance to dive in to the research via consulting with other physicians and reading anything related to c/uc treatment that I was unfamiliar with. It is clear there is a lot of impassioned resistance to FMT in the medical field today, NDs included, therefore very difficult to collaborate with them. The vulnerability of extremely ill patients combined with physician’s status in the patients eyes telling them there’s no good research behind FMT makes it very difficult for patients to get started for themselves. Those who don’t have C. Diff that is. The international Gut Health Summit in Miami last March was a great conference. Getting to talk with GEs and researchers in the Microbiota field from around the world was invaluable. This weekend there an international conference specifically on FMT which should also provide even more useful information.

    From doing FMT myself, and having talked with plenty of others, I would agree with the above comments regarding quantity and frequency are the key factors to achieving a long term success. Most people want this to be a one shot cure, especially since the C. diff stories are so dramatic and covered by insurance. I’ve done 34 consecutive enemas and will continue at 2x week for 2 month then 1 x for 2 months, then twice per month. My donor is my wife. It’s a commitment. Which I think is a very fair price to pay for regaining one’s health. I stopped the above meds last June (which completely flipped out the Gastro I was working with) went on aprisio for months then tapered off as my anemia improved.

    The other two important steps to achieving a good outcome, IMHO, is having your inflammation under control before you start and being as (intestinally) empty as possible before your first enema.

  5. I am hoping to get guidance from you.

    I have a almost 3 yr old who is going through severe constipation, severe allergies (can eat only 4 items on rotational basis). He had 18 rounds of ABx from 4 months to 2 yrs age due to various ear infections/etc. His reaction now to foods / allergens has blown up to asthmatic reactions.

    We have just started researching FMT to help him.

  6. My son is 19 years old has Crohns and now C-diff. Is currently on Remicade and just stopped his Imuran. Has been on multiple rounds of Vanc with no success. I have finally talked his GI into doing the FMT for the C-diff. If i told him he wanted to learn to do it for his Crohns he would look at us like we were crazy. He says that he will remain on the Remicade for life. We are both so scared of these drugs and would like to try FMT for the crohns as well. Does anyone know a doctor within a few hours of Alabama area that would be up to date and willing to guide us in this avenue?

  7. How do you join the private FMT Facebook group?

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