IBD-A MOM's guide to survival
After 3 weeks of having a healthy active 10 year old since her FMT treatment was completed, we had our first follow up treatment with Maddy's GI team at BCCH. Without going into too much detail, I will say that their reaction was less than encouraging. We were warned about risks, long term success rates being unknown and home treatment being unsupported and definitely not recommended.
After being a part of the FMT community through various blogs, Facebook groups and direct Skype and telephone support conversations, I know first hand how this treatment can and does change people's lives. The fact that this treatment still remains so inaccessible to so many people and the lack of support available in the medical community, is distressing to say the least.
While I do support the FDA's involvement in investigating FMT in order to legitimize and standardize the procedure, I cannot possibly support their decision to enforce protocol that essentially puts a stop to FMT as a treatment option in anything other than dire situations. This only further enforces the need to do this treatment at home and without medical supervision. In many cases it is a last resort when it should be a first line of defense. Not only that, the only known risks associated with FMT are related to lack of or improper donor screening. Many people can't afford the donor screening and with lack of medical support, screening is very costly-even in Canada.
This further encourages desperate people to take unnecessary risks with their health and the health of their children. I for one am not willing to risk my child's health by administering FMT from anyone other than a screened qualified donor (in this case myself) but I can't say what I would do if faced with a sick child and no other options.
I am one of the lucky ones. I gained access to a doctor performing this procedure who taught me how to do this safely. Madison had completed this procedure exactly one week prior to the FDA's intervention that halted the treatment by her doctor in Portland and all other doctors performing FMT outside of clinic trials in the US.
Not only that, I am a qualified donor, I can provide this treatment to my daughter anywhere, any time. And no one can stop me. Many other people and many other parents are not so lucky. What about them? What options are left? I am left feeling a lot of sadness for those who aren't so lucky. And a lot of gratitude for those of us who are.
Madison became symptomatic again this past week..the signs are subtle but they are there. I have been watching her carefully, inspecting every bowel movement, watching for slight behavioral changes and asking lots of questions...today I asked her if she was feeling as good as she was in Portland. She said "no mom, I am starting to feel not as good. And I'm really tired. That coupled with a few softer stools and some mucousy ones too, had led us to the decision to start the home FMT treatment. I was hoping she would feel better longer but she has had an incredibly solid 5 weeks of good health and vitality. She hasn't felt this good in years.
So, we will start FMT again this weekend. It isn't ideal but it's a FAR better option than more meds. Most importantly, we know it works. And if we have to repeat it every month for the rest of her life, we will. And we will be grateful that something does work. I don't have to give her more medications and wonder if they will work and hope that there aren't more side effects. Because we are among the lucky ones. We have a treatment that does work and there are no side effects. It's free, it's safe and it's accessible. For us. But not for everyone. This has got to change.
And we will do our damnedest to make sure it does.


Leave a Reply