Today was a really GREAT day! Maddy's treatment only took about 10 minutes and she was once again really empowered by being able to do it herself! She was really verbal about how proud she was. She couldn't wait to get out and see Portland today! We decided to have breakfast at an awesome spot called the Tin Shed. A great dog friendly restaurant with awesome staff and even more awesome food! Lots of fresh local ingredients and free range eggs, hormone free meats etc... Maddy polished off a full order of eggs benny AND a fresh strawberry pancake! We then went to the Naturopath's clinic where Maddy had another craniosacral therapy treatment and massage. She didn't want to stop there so we went down to Portland's largest bookstore Powell's Books, it takes up an entire city block and has over 1 million titles! Maddy was in heaven...
Playing some street music with the locals...
After our adventures at Powell Books, we headed down to Voodoo Doughnut for some fun and a sugar hit! Maddy had a blast, and made some friends in line and out front with the locals. She played them her Gutsy Girl theme song "It's not who I am" and they loved it!
After our adventures we came home (to the Marriott) and I made a huge pot of quinoa spaghetti filled with grass fed beef and a ton of veggies. Maddy ate the whole plate! She was feeling great all day, had tons of energy and is now refusing to go to sleep!! Not to mention that she managed to retain the FMT treatment for over 5 hours today with no problem at all....these are all great signs!
Maddy even said today: "I feel really good mom, I think this is working..."
Time will tell but it's hard not to be really excited about how good Maddy was feeling today!! She is excited for tomorrow and we are all thrilled that she is feeling well enough to get out and explore Portland!
After almost 40 hours with no food and only water and a small amount of broth in her belly, my brave little girl overcame her fear and successfully received her first of 10 fecal transplants. Not only that, she actually administered it herself with her doctor's guidance! The doctor (Mark or Dr. Mark as Maddy calls him) called us at about 10:00 am this morning to let us know that our donor had provided the first sample for transplantation and that he would arrive in approximately 2 hours but he would call us again when he was on his way. We distracted ourselves by watching a few episodes of "Wild at Heart" (an awesome family friendly British TV series about a family who moves from England to Africa to breathe life into a run down guest house and start an animal refuge and rehabilitation centre.-Maddy loves it!)
It wasn't until we got the second call that Dr. Mark was a half an hour away that I could literally feel Maddy's heart start to pound. As anyone who is about to receive a fecal transplant for the first time might react, her mind and body began to feel overwhelmed with trepidation and anxiety.
Once Dr. Mark arrived and received a thorough inspection from Echo, guard dog extraordinaire, Maddy began to get very nervous and felt like she was going to throw up. We spent about half an hour talking about the procedure and what was going to happen before getting Maddy into a comfortable position in which to receive the enema. It was at this point that the fear overwhelmed her and she did in fact throw up. As we all know, throwing up isn't at all desirable at the best of times but particularly not when you haven't eaten in 40 hours. It took a bit more conversation but in the end she chose to go through with the treatment despite her fear. On Dr. Mark's suggestion, she also chose to administer it herself and quickly realized how painless it was and that she could in fact do this! I've never been so proud! This kid of mine is one tough cookie. I've also never been more impressed with a doctor in all my experience with medical professionals of all kinds. Mark was kind, patient, helpful and most importantly, he took his time. He talked Maddy through all of her fears and ultimately, he made her feel in control. Maddy was so impressed with him, as were Scott and I. We had a few more chats, laughs and encouragement before Mark packed up his equipment and went on to see his next patient. Maddy gave Mark a big hug and thanked him for being so awesome. Then it was hugs all around for Scott and I too...and of course Maddy needed one last hug. Now, THAT is how a doctor should be-talk about feeling like old friends! He made Maddy feel so comfortable and even empowered her to take her treatment into her own hands-literally!
Maddy had a treatment from the acupuncturist this afternoon and spent the day reading in bed. She threw up two more times but she was eventually able to eat and hold down her meals and lots of water to rehydrate. The recommended amount of time to try to retain the FMT for is 4 hours, Maddy was able to take in the entire amount of the transplant AND retain it for 4.5 hours! You can't ask for much more than that! What a huge success this first day was!
It was a long and emotional day but we are all feeling optimistic about our experience here in Portland. And Maddy-well, she is busily making lists of food trucks to visit while we are here...next stop: Voodoo Doughnuts! :-)
We arrived yesterday afternoon in sunny Portland for Maddy's FMT treatment. Our trip was smooth and all of us made it across the border without incident. We were most concerned about Echo (the family dog) with all of her priors...mostly dog park misdemeanors but you never know with these American border crossings! ;)
Maddy is thrilled with the hotel basketball and tennis court, heated pool and dog friendliness! She played in the pool and we watched a movie before bed. There was a little drama around taking the last dose of her antibiotics so I am thrilled that that is done with-Whew!!
This morning we met with Maddy's team of amazing health professionals. The FMT will be performed by Dr. Mark Davis of the Bright Medicine Clinic and also two lovely new additions. Sharon will be in charge of Maddy's Chinese visceral therapy, Mayan abdominal massage and other types of body work. Karen will be in charge of Maddy's Chinese and herbal medicine as well as her acupressure and acupuncture. Maddy felt at home immediately and Scott and I were very impressed with the group. They were thoughtful and kind and gave Maddy just the right amount of compassion, information and respect. Not to mention massage..anyone who knows Maddy knows that if you give her a massage, you are a friend for life!
Maddy is on a non caloric intake diet today consisting of only water, tea and broth. So far her energy and spirits are good and she is looking forward to the first FMT enema tomorrow because it means she gets to EAT!! :)
We picked up some food (for tomorrow) and took the dog for a stroll in a lovely local off leash dog park at Laurelhearst. Now we are back at the hotel for a rousing game (or 10) of Wi Sports and a swim before bed.
The real adventure begins tomorrow...
Maddy is starting very high doses of 3 different types of antibiotics in order to prepare for her FMT treatment starting next week. For a child who already takes multiple medications, multiple times a day, adding 3 more meds, 3 times a day each-is going to be a challenge. Both physically and emotionally. When you already have GI pain and disfunction, really strong antibiotics can be pretty intense. Especially since they all have really strong aftertastes.
Not to mention, when you have to take all these meds and supplements at certain times, multiple times daily, some with food, some without, some not within 20 mins of a meal, others mixed into food/drink, some standing on your head or riding a unicycle etc...it starts to feel like meds run your life. Especially when all you want to do is go and play.
Now, taking all these antibiotics may seem pretty counterintuitive to you, it sure did to me. Especially knowing that there is a link between pediatric antibiotic use and IBD. As it turns out though, the evidence for using these types of antibiotics prior to FMT and its consequent positive outcome is pretty strong. So, out with the old (bacteria) and in with the new! (bacteria)
Here's hoping the kid can stomach all this...especially since the marshmallow, banana cream and bubblegum flavours are worse than the harsh bitter taste of the meds, if you ask me! The jury is out on whether Maddy will agree!
Here is a link to an excellent blog post for anyone who wants to know more about Fecal Microbiota Transplantation (FMT)
It has some great links to more info, lists of doctors/clinics offering treatment, links to DIY fecal transplant info, studies completed and others underway.
It is a little outdated as there are more recent developments but there is a lot of information here, all in one place.
If you or someone you know suffers from ANY digestive or related disease or autoimmune disorder, I urge you to at least read more about it...it really is changing people's lives and I hope that Maddy will be one of them!
Ever had an enema? Me neither. Until last night. My kid has to do 3-4 large volume water enemas (1.5 litres) before her FMT treatment, which will consist of several more water enemas for cleansing and 10 more fecal enemas over the course of 2 weeks. I figured the least I could do was test it out on myself to help ease her fears. Turns out that although in the grand scheme of things, it's not THAT bad-it really is one of the LEAST fun ways to spend a Monday night!
I'm glad that I went through the process though, because today I was armed with information and experience as I tried to convince a scared little girl that this really wasn't going to hurt!
The truth is, it doesn't hurt. It's uncomfortable, a little gross and mostly demeaning as you crouch on a sanitary cloth on all fours on your bathroom floor.
Again, it is the LEAST that I could do.
After a lot of crying and even more convincing, she agreed that she needed to do this. That WE needed to do this.
In the end, SHE did it! It was scary, uncomfortable and demeaning. My brave 10 year old little girl did this because she is just that: BRAVE and STRONG.
More than anything, she wants to get better.
And now she knows that once again, she was able to overcome her fears. That she CAN overcome her fears, her disease and anything else life decides to throw at her.
And I know that I can help her, guide her and love her every step of the way but that she will ultimately be able to do this and everything else- all by herself.
That, and I can be certain that I have one hell of a squeaky clean colon. :)
My 10 year old daughter Madison has Crohn's Disease or IBD. She has been sick for well over 3 years and her disease has not been able to be managed by medication, diet or other treatments. This disease affects every aspect of her life. In a search for alternative treatments, I came across a procedure called fecal microbiota transplantation or FMT. This procedure was first used in the 1950's but more recently it has been used to very successfully treat Clostridium Difficile (C. Diff.) It is now being used to treat Ulcerative Colitis & Crohn's and there are clinical trials going on all over the world, including Canada. There is also talk in the medical community of using this groundbreaking, SAFE, non pharmaceutical treatment to treat Multiple Sclerosis and other autoimmune diseases, obesity and even acne.
FMT works by replacing the unhealthy gut flora of the patient with the healthy flora of a suitable donor. More on that later..
After researching FMT on the Internet for several months (while watching my little girl's health fail while she came off of yet another high dose of prednisone) I started an intensive search for a doctor who would perform this procedure in Canada. Long story short, this is a procedure that is not yet approved for wide spread use in Canada. There are several clinics around the world (mostly in Australia, the UK and the USA.) and their protocols are mostly quite similar. The reason for this is that most protocols are based on those of the pioneer of this procedure: Dr. Thomas Barody of the Australian Center for Digestive Diseases (CDD).
After much discussion with many doctors and clinics in the US and around the world, I settled on Dr. Mark Davis from the Bright Medicine Clinic in Portland Oregon. He is a naturopathic doctor with a passion for helping patients with IBD and other digestive diseases. I chose him not only for his proximity (Portland is only a day trip by ferry and car from where we live in beautiful Victoria, BC.) but for his passion for helping people who live with these diseases and his experience and interest in FMT. More on that later too.
As I embark on this journey with my daughter, it has been brought to my attention how many people (parents and children alike) struggle with this disease. Many parents I talk to feel as though a life of medication, restrictions and pain are the only options for their kids. I believe that medicine should be inclusive of all types of medicine. Pharmaceuticals are not the only option for these diseases. Although I may not be able to access all of the options in Canada, there are other options out there...but I had to look for them. I've had to look hard. I've had to look past the advice of trusted professionals in many cases and I've had to look past the "ick factor" and get down to pure science too.
I am just a mom who loves her daughter and wants her to live the best life that she can live. That's what all of us parents want. I hope that by documenting this journey, I can help someone else answer their unanswered questions and hopefully provide information and support where it is so badly needed.
We leave for Portland on April 26th to spend 2 weeks in a hotel room together as a family. My daughter Madison, Scott (the love of my life and biggest support to both Maddy and I through this) and our trusty rescue dog Echo, because no journey would be complete without her. Maddy will have her FMT treatment and we will be there to support her every step of the way.
I hope that by sharing this journey, we help someone else along their own journey..