Well, it seems that the FMT controversy plot thickens. As some of you may know, we had to travel to the US for Maddy's FMT procedure since it was not approved for use in Canada. The regulations around FMT were much less restrictive in the US, Australia and the UK. Now, this appears to no longer be the case in the US.
Since the FDA caught wind (pardon my pun) of the widespread use of FMT, the sh*t has hit the fan.
As the Scientific American writes: "The Food and Drug Administration has caught a whiff of the controversial new treatment and has declared fecal transplants as a biologic therapy, meaning any doctor who wants to use it will have to file an investigational new drug application. For patients, this means more paperwork, a longer wait for treatment and a potential application rejection from the FDA."
Since leaving Portland less than 2 weeks ago, Maddy's doctor, Dr. Mark Davis was forced to cancel scheduled FMT treatments in light of this development. He is one of many doctors who have no choice but to deny patients this procedure until they receive approval from the FDA. And even if they receive this approval, it's unknown how long this will take and if they will require approval on a case by case basis.
After witnessing first hand what this groundbreaking treatment can accomplish, I am very saddened by this news. It pains me to know that many people (especially kids) will not have access to this treatment. Time will tell how much this will affect doctor's in the US being able to administer the treatment and how the "trickle down effect" will affect us Canadians, but I refuse to dwell in the negative.
This is a very safe and effective treatment that has the power to change lives. I will do the best I can to share, educate and lobby to help create accessibility to FMT in Canada. This needs to be an accessible treatment for everyone. The FDA can shut down ND's and MD's but they can't stop us regular people who want to see our loved ones have access to this healing treatment. I am actively seeking information about the ethics and legality of ND's in Canada treating C Diff and IBD patients with FMT, if anyone has concrete answers, please contact me. I am currently waiting to hear back from the British Columbia Naturopathic Association and The Canadian Association of Naturopathic Doctors. It will be interesting at the very least to know where they stand...and no, I haven't even bothered with our government funded medical system, I already know where they stand on this. My FMT research prior to traveling to the US for FMT told me all I need to know about the possibility of finding an MD or specialist of any kind willing to do this procedure outside of clinical trials. I only hope that if we all try to do our part to make it known that we are willing to take this into our own hands, (and bathrooms) that our government will see how important it is to provide professional care, if not to keep people safe but also to document the efficacy of FMT and further perfect the treatment. I will continue to update the blog as I become aware of new developments.
In the time being though, I'm willing to be a voice for this disease and for this treatment. Neither Maddy or I are ashamed nor concerned about privacy around this subject. As a result, our family feels a great responsibility to try to help as much as we can. We will do our best to provide information, fight for approval and regulation of this treatment and support others who embark on this journey...it's the least we can do.
I'm pretty sure that's a line from a Soul ll Soul song...but if you aren't a dancing queen of the nineties, that's probably a reference lost on you! ;)
Well, it's been an interesting week! Since returning to Victoria last Saturday, we kinda hit the ground running!
We spent a low key Mother's Day doing laundry and hanging out around the house after a lovely brunch at my favorite breakfast spot in Victoria, The Village. That's us at brunch in the photo. :)
Then, it was pretty much back to reality! Maddy was back to school and full of energy! She has been routinely difficult to wake up in the morning, often sleeping until 10am and going to school late, if at all. Not this week! She was up by 7:30am every day, hungry and full of energy and made it to school on time, every day this week! She easily took her meds with no stalling and no complaints. On Wednesday she rode her bike about 20km and ran around the beach all day on a school field trip. She then went to her guitar lesson, immediately followed by fueling up on Thai food before going to her 4H Club meeting and spending the last half of the meeting running again during a raucous game of tag. She didn't get to bed until 10pm that night because she was so wired!! She never would have had the energy to do any of these things before the FMT so this is all really amazing and really scary. The scary part is that our home treatment might not be as good as our doctor's treatment. What if my poo isn't as powerful or pure as the donor poo? These are all questions that will soon be answered...and it's scary.
On Thursday, Maddy had a bit of an off day. She went to school and her energy level seemed ok and after school she had a friend over and played pretty rowdy for several hours. After her friend left though she said she had a headache and spent the rest of the evening on the couch. This concerned me at first but she still ate a lot of dinner and said she had no pain. She had complained twice this week of her "normal pain" which hadn't existed in Portland and had one stool that was slightly less formed with a small amount of mucous so when her energy went down, I got concerned. I didn't feel great that night either so we both went to bed earlier and we all slept in the next day as Scott and I had the day off and Maddy had a Pro-D day at school. After hanging out in bed reading all morning, she bounded down the stairs full of beans again and ate a huge breakfast and had an awesome formed BM!
So, I'm chalking that low energy blip up to potentially battling a bit of a flu bug as she seems fine now! She had a friend over for a sleepover last night and they are up running around as we speak. It is so easy to get worried every time your child has an off day. As anyone with a chronically ill child will know, you are constantly on pins and needles. Will this medicine work? Will this therapy make a difference? She seems great today, will they go back downhill tomorrow? How many times did she go to the bathroom today? Is she in pain? And on and on and on...
I've been in the position so many times where I thought "this time she's in remission" only to be disappointed when symptoms return. It's a constant state of worry and you watch their symptoms and behavioral changes like a hawk. And it is SO hard sometimes to tell the difference between just being a kid and having normal mood swings, cold and flu symptoms and the off days we all have from time to time.
So, with FMT it is no different...except, for the first time EVER, we have a treatment that we know works, has no side effects and is completely free and accessible, NO MATTER what. The FDA can shut down doctors and clinics (which is happening and this is a whole other post) and my poop might not be as powerful as her donor's, her symptoms could return. But now I know that (at the very least) there is a 7 year old boy in Portland who's poop is my kid's medicine. Which means that many other people's poop can be her medicine too, and hopefully mine will be the medicine she needs.
I have now gone through all the testing necessary to clear me as her donor. 3 fecal test and whole host of blood tests, hopefully I don't have some kind of weird parasite picked up in our Central American travels! ;)
I've also spent the week gathering supplies for our at home FMT treatment. Now THAT was an interesting exercise in weirdness at its finest. I went to excess cargo to buy a "dedicated poo blender" (so, yes it's safe to come to margarita night at our place! ;)
I had to search the city for empty enema bottles, which apparently don't exist around here so for now we will be purchasing the generic enema kits and emptying the bottles to refill with poop. I have assembled my "medicinal poop factory kit" (as I am calling it) to make it seem less creepy to Madison and to myself! It's all sitting in my bathroom in a large Tupperware bin, ready to go. As soon as I get the ok next week, we will begin twice weekly infusions for 8 weeks.
Oddly, (or perhaps not) Madison doesn't seem at all concerned. For one, she trusts me. But also, she knows that this works and that she's never felt better. That is all the convincing she needs.
Yesterday, we received the news that we have been waiting for. For all the improvement in symptoms, appetite, energy, bowel urgency and frequency, etc. the real proof of success lies in the numbers. (For doctors at least)
C-Reactive Protein (CRP) is the test that measures inflammation in the body and is the most common blood test marker used to monitor inflammation in IBD patients. The normal range is 0-5. Maddy's levels have been as high as 97 (yikes!) and never lower than mid 20's since we've been testing her CRP. Her CRP was 45 prior to the antibiotic pretreatment preceding her FMT and it was 37 on the Tuesday prior to her FMT beginning. Not as insanely high as it had once been, but not good either. She had just come off the prednisone less than a month prior to the FMT so that number was better than it had been in the past but it was steadily climbing without the prednisone in her system.
Yesterday, the news we were waiting for finally came in. In just 2 weeks of FMT, her CRP was at 18. It had come down 19 points in less than 3 weeks. This is INCREDIBLE news. This is confirmation that this works for her. On paper. The three of us actually did a group family happy dance, it wasn't pretty, but man it was satisfying!! ;-)
What ever the coming months and years hold for us, we know this works. IBD feels at times like a life sentence of pharmaceuticals and knowing that there is a real viable alternative living in each and every one of us, it's like a real life miracle. I've said it before and I'll say it again: we will do it as often and as long as we have to to keep Maddy healthy. I have never been so relieved in all of my life. :)
It's been an amazing, life changing two weeks in so many ways. We will be leaving Portland tomorrow with a happy healthy child who has a new hope for a healthier future. From the unbelievably awesome team of naturopathic doctors we have worked with, to the changes we've seen in Maddy's health and the fantastic friendships we have formed, this experience has changed all of us in countless ways.
I can't thank Mark Davis, Sharon Woodard and Karin Parramore enough. These are three of the most kind, compassionate and dedicated healers I have ever had the pleasure of working with. They were available to us every step of the way and they were as committed to this journey as we were. I will be forever grateful to them for not only the healing groundwork they have provided for Maddy but for the warmth and friendship they shared with all of us along the way. This truly was a remarkable experience for all of us.
The road ahead may be long and it may be bumpy but it might just as easily be smooth, only time will tell. We are now transitioning into the slightly scary (and a little icky) phase of doing weekly transplants at home. Weekly infusions for the next 8 weeks and then we will reassess from there. I must admit that I'm a little freaked out to be doing this alone without the preparation and administration done by Mark. In typical Mark fashion though, he has promised to be there for us by phone, by email, by Skype. So, at least I won't really be doing it alone, I will be doing it under Mark's watchful eye. At least at first. Although, I suppose that just as this process seemed totally crazy at first, it all seems so normal now. Eventually, this will all seem normal. It's hard to believe really, that fecal infusions can become a normal part of your routine. But they can, and they have.
I Skyped for an hour and a half last night with another mom who is researching FMT for her 7 year old daughter. As we chatted about doctors, medications and yes, the power of poo-I realized that for us-this IS normal. Mark and I take pictures of poo and email them or casually look at them and discuss their esthetics. Mark even jumps up excitedly when Maddy invites him in to the bathroom to check out her latest bowel movement. Now that is a dedicated doctor!!
Today during our last infusion as Karin, Mark, Scott, Maddy, Echo the dog and I all sat around the 200 sq. ft. hotel living room that Scott, Maddy and I have called home for 2 weeks, I was preparing to cook Maddy breakfast. I invited Karin & Mark to join us. Knowing that it was not out of politeness, but genuine friendship, they naturally accepted. We all sat around eating and chatting (you guessed it-more poo talk) and naturally being that Maddy, Mark and Scott all play guitar and sing, the guitar made it's way out. An impromptu jam session broke out and as I sat drinking my coffee and listening to the laughter and music that filled the room, I was struck by how lucky and grateful I felt. It really was quite overwhelming. I'm not sure quite how it happened but something that could have been really scary and upsetting for a sick 10 year old had turned into an incredibly empowering healing experience. Who knew fecal transplants could be so much fun!! Since the moment she met Mark and his team, her fear dissolved. They made her feel comfortable, they made her feel important. And above all, they made her feel safe. I don't know about you, but I haven't had an experience on this level with many other doctors, in pediatrics or otherwise. I wish it were not the case, but this is rare. This is not to put down other doctors but more to commend this team for their incredible ability to put their patients in a relaxed and trusting state in order to really receive their treatment. On every level. This trio of pros have no idea how well they do this, not because it isn't important to them but because it just comes so naturally. It is just who they are. For Maddy, there is no more fear. Only trust. And only healing.
So, off we go into the sunset. Onwards to complete this journey on our own...it's going to be scary but we can handle it. And this won't be the last we see of our new friends in Portland. They are forever a part of us and we will be back to visit them again soon...these are the kind of friendships you keep for life.
Wow! I can hardly believe it's been so long since I've written...things have been so busy and Maddy has been doing so well, I just haven't had a moment to write!
We had Saturday and Sunday off this past weekend, with no FMT or other treatments. Maddy did amazingly well. She was full of energy both days. We spent all day Saturday exploring the Portland zoo and all day Sunday exploring the Oregon Museum of Science and Industry. Maddy was in heaven!!
Now, normally we would not attempt to do two days of heavy walking and activity back to back but we have a new child on our hands who is full of energy. You can see it in her face, the way she talks, the energy with which she moves. It really is quite remarkable. When Maddy isn't well, she uses reading as a coping mechanism. She escapes into a book. She's been doing it ever since she learned to read. (I know, I know-there's far worse coping mechanisms right?) It is something that I've used to gauge her pain levels for a long time though. The more she buries her nose in a book, the more pain she is in. On this trip, she has read only in the car and when she has nothing better to do. She hasn't read through meals, conversations or other more interesting activities like she usually does when she is unwell. She has spent her idle time swimming, playing, walking and eating. Lots and lots of eating.
My first indication that her inflammation had to be way down, was from a simple loaf of bread. If you've never heard of Dave's killer bread, you've gotta get some. It's killer. :) I often buy different bread for us than I buy for Maddy. She grew up on grainy, seedy, nutty dense breads, which we both loved! When she started showing signs of GI illness, fibrous breads were one of the first things to go for her. She started to "not like" things like seeded bread, nuts, berries and other things she'd always enjoyed. If she suddenly "doesn't like" a food that she's always enjoyed, it's a clear sign of a flare to me.
In any case, after a few successful days of the FMT treatment, I bought a loaf of this awesome seedy and nutty bread and she has been eating it like crazy!! With no pain and no problems! It really is unbelievable. Not only that, she's been eating strawberries, raspberries, mangoes, RAW snap peas, peppers and even broccoli!! (all things she used to eat but hasn't enjoyed for quite a few years)
These all may seem like simple things to some but to us, it's a miracle.
Maddy has also continued to maintain her pattern of 1 bowel movement per day with formed and semi formed stools. No blood, no mucous, no pain. She did have two bowel movements yesterday and retained the fecal infusion for just under 4 hours which was much less than her usual 20-24 hours but seems to be back on track today, having retained the FMT since 1pm today and a continually voracious appetite! My guess is that the weekend busyness, heat and a few too many foodcart snacks likely threw off her schedule a bit. Her energy level was slightly down on Saturday but I'm guessing that was due to waking around the zoo for 5 hours in the unexpectedly HOT May heat wave in Portland! She seemed to go right back to normal on Sunday and had the energy for another long day of running around the OMSI.
And yes, we made it through both the zoo and the OMSI, without EVER finding our where the bathrooms are! Another milestone for sure.
All in all, Maddy is doing phenomenal. Her doctor of Chinese Medicine says her pulses have improved dramatically too. Everyone can detect a significant change in her mood and her energy but nobody notices the changes more than Scott and I. We really are trying not to get ahead of ourselves. We don't know how long this will last. But we do know without a doubt that this is working. We will continue the fecal infusions weekly at home for 8 weeks and reassess from there. Like I said before, I will keep doing them as long as I have to. And it feels awesome to finally be doing something that works. Having hope is a wonderful thing.
As I was eavesdropping on Maddy's Skype conversation with her best buddy tonight, I heard her say: "Ya, for real. He comes with a bottle of poo every day and squirts it into my bum. " To which her friend replied: "Gross. But it's working! Cool!"
I couldn't agree more. A little gross. But it's working. Cool. :)
Well, here we are on day 4 of the FMT and nothing but good news to report! Maddy gets more comfortable with the procedure every day. Yesterday was a real milestone for her. She had 1 bowel movement in the morning and nothing for the rest of the day! Now, this may seem like no big deal but for anyone who has IBD or is close to someone who lives with it, you know that this is a HUGE deal. BM frequency and urgency is something that most people with IBD live with day to day and hour to hour. Some days are worse than others. Maddy has had no less than 5-10 bowel movements per day for a very long time. I never take her anywhere without knowing where the bathrooms are first thing and it is not unusual that we are late for school or other appointments as a result of unexpected bowel urgency. There really is nothing you can do but wait it out and try your best to always leave time for unexpected bathroom breaks. It has been such a huge part of Maddy's life for so long that she has completely forgotten what it's like to not have to go to the bathroom, all the time. In fact, I'm certain that she actually has no idea how often she goes because when she is asked by the doctors about her frequency she always answers less than half of what is actual for her.
Yesterday, Maddy had one bowel movement at 10am and then nothing for the entire day. Even after having a fecal infusion at 11am. That has not been the case for her for well over 3 years! This has been the case for 2 days in a row now. She has been exploring Portland, swimming in the pool, playing Wi and eating. A lot of eating has been going on! She is feeling full of energy and how she is feeling is very evident in her behavior too. She is bursting with energy and is excited to wake up every day. This has not been the case for a long while. Since coming off the prednisone over a month ago, she had been getting more and more lethargic and more and more withdrawn every day.
As I said before, there is still 10 days of treatment to go and we won't know how long this will last...only time will tell. That being said, we all know this is working and we can see it working before our eyes. More importantly, Maddy can feel it working. If I have to administer a fecal transplant every month, week or day to avoid the harsh medications and all the life long side effects they have, and to avoid watching my baby suffer, I will do it. And I will do it gladly. Never in a million years did I see myself or Maddy going through this strange and miraculous process but here we are, and strange and miraculous it is! Poop as medicine. Who knew!?! The craziest part is, we just flush it away, every day! No pain, no side effects. Once you get passed the ick factor, you really can get quite comfortable with the whole thing. Especially when you watch your child's health restored. Never again will I look at poop the same way...and neither should you. The human body never ceases to amaze me, it really is quite unbelievable. I for one am raising a glass to the power of poop tonight! :)