FMT For Children
Nick: This is episode 10 of the Holy Gut podcast. In this episode, we discuss FMT treatment for children. I’m back with Dr. Nathan Connelly, and today we’re looking at the subject of treating children with FMT. Hi there, Nathan.
Nathan: Hey Nick, how are you?
Nick: I’m well. So I manage your website, and I’ve noticed in the last couple of months you’re been getting several inquiries for treating children with autism for FMT. I was quite surprised by one of the inquires because it was for a child age two. So I think it’d be worthwhile talking about treating children with FMT and how you make decisions. So shall we talk about that today?
Nick: Okay. So when you get an inquiry for an FMT for a child, how do you process or what sort of procedure do you go through?
Nathan: Well, the first thing that goes through my mind, given that there is some pretty good mounting evidence for the use of FMT in autism from America. So Arizona Autism Group has done most of the research. The research is fairly preliminary, but it’s been strong enough for the Federal Drug Administration in America to approve FMT for autism, which is astounding given some of the things they’re not approving FMT for.
In America, they’re much more prescriptive about what you can and can’t do with FMT. But as far as I know, this is only the second indication for FMT in America, and doctors over there are pretty much bound to do or not do what the FDA tell them to do.
And you’re also, second point is you’re looking at a condition that, apart from excellent supportive care, and again I mentioned this previously, at no point would I suggest that supportive care is not vital in the management of autism and that it’s not effective in the treatment of autism.
There is no cure for autism, and there’s no actual treatment for autism that affects the underlying cause of why kids have autism. So there’s no way of sort of middling with the pathophysiology, if you like, or the underlying cause. And FMT does provide a potential way to do that. So, therefore, you’re not doing FMT in the absence of doing something else. It’s not like you’re choosing to do EMT instead of taking a pill or doing an infusion or cutting out a bit of brain or doing deep brain stimulation or any of those kinds of things. You’re doing it because there is, partly because there is, nothing else. And I think that’s one of the reasons why the FDA actually approved it because of that lack of other treatment.
And the second thing that goes through my mind is really, ideally, all of this should be done as an ongoing research effort by a large public-funded hospital in Australia. So this shouldn’t be something I should be doing at all. It should be something that’s done as part of an ongoing research project or area of interest or expertise with a multidisciplinary unit and all that kind of stuff. So ideally it’s still in that realm that that’s the way it should be done but it’s as far as I know, and I’m happy to be corrected, that sort of program doesn’t exist anywhere in Australia and neither are there any plans to do so.
So therefore what you’re left with is people who are desperate and who want something done for their children beyond supportive care. And therefore, I think ethically, given the evidence that exists for it, that that should be a possibility. And then you come up against what are the barriers to doing it.
There are cost barriers because FMT is expensive, donors have to be paid, stuff has to be processed, all the rest of it. And then there are the logistical issues of trying to do FMT on children. Now as far as, I always think that doing FMT, and we’ve discussed this before. Again, and I think always the first one should be done colonoscopically if possible, but that doesn’t have to do it that way. So you can get around that one by just using enemas, and then you’re dealing with the issue of trying to do an FMT enema on a child.
I’ve done them and they’re actually not that difficult, and children have quite long anal sphincters that are very, very robust and they tend to actually cope with FMT very, very well. It actually isn’t that difficult, and if you’ve got motivated, involved parents who can talk the child through it, generally it’s not as much of a barrier as people would think it would be. That’s my experience with it in the past.
And then, the final barrier, I guess, to doing it is criticism from my colleagues, and that’s probably that’s an issue for me, not anyone else. But that’s the sort of third barrier to doing it. But beyond that, really, there are no barriers. There are suggestions of which way it should be done. Should you do it from the bottom end? Should you do it from the top end? I think the Arizona group is a mixture of both from their study.
From a theoretical point of view, I think it’s always best given from the bottom and if possible, because I just think it makes more sense, but that’s just me. Working out whether it’s best given from bottom end, top end, or a mixture of both is something for later on. And again, why I think this should be done generally in a dedicated research setting if possible, but neither do I think it’s ethical to withhold it from people who have no access to this treatment, which could be very useful for the management of this problem. It’s a balance.
FMT For Autism in Australia
Nick: I see. Okay. So in Australia, unlike the US up until now, there’s been no restrictions.
Nathan: No, it’s been mooted to have restrictions, but our system doesn’t work the same way.
Nick: So how do you make a decision whether to treat a child or not? Is it just the same way you’d go with a normal patient based on their history and the symptoms?
Nathan: Yes. The first thing I really don’t think, I think from a theoretical point of view there is no base to symptoms. Most children with autism and even severe Asperger’s, you can tell they need treatment. It’s pretty obvious they have loss of quality of life, decreased prospects, all that stuff is pretty obvious. And they’re not there because the child is or maybe. They’re generally there because they’re a definite and you can pretty much, if you deal with children, autism, you can pretty much tell when they walk through the door that they’re autistic.
So that’s not the question. It’s more a question of education and discussion. I really like it if the pediatrician is supportive, that the other health professionals, whether it be the the pediatrician, the GP, clinical psychologist, whoever’s, the therapist, whoever’s dealing with the patient, that everyone’s onside and happy this is the right thing to do, so I really, really like that.
The parents need to be educated. Often as a trial, we’ll use a trial of antibiotic therapy, so there is good evidence that autism symptoms partly respond to pull the absorbed antibiotics. So sometimes I will give a course of a month of some antibiotics to see whether that helps. That often gives a good indicator of what’s going to happen when you do the FMT, I think. And beyond that, really it is education. It is consent. We know that the parents are consenting on the child’s behalf, but that’s the way it always is.
Going through that consent process and that education process, that might take two or three sessions of, you know, half an hour to an hour. It’s not something you just rock up and do. I would never do that. You’re not going to say, well, yeah, I’ll do it. Not in this situation.
It’s very much a case of… On the other hand, you don’t want to make it inaccessible because people just go and do it themselves, which I think is, again, an argument for not trying to be too obstructive either because if the donors are well screened and it’s done the right way, it’s a very safe therapy.
The problems that have occurred, which have been very few and far between, have generally occurred because of poor donor choice or poor donor screening or poor case selection. So, you know, you’ve got to do it properly. You don’t want to also scare people away because they’re going to do it themselves and they’ll use God-knows-what, or do it God-knows-in-which-way and that’s not what you want.
Nick: I was going to say, for a parent who, unfortunately, let’s say they couldn’t afford the treatment. You know, they don’t want to be at home trying to do this, do that.
Nathan: They can with some education and I have considered and suggested and gone through with people on how to do it themselves.
Nick: I see.
Nathan: That’s something I have been approached about in the past, and I have helped people out with that, again, as a harm minimization strategy. If I know they’re going to go and do it themselves anyway, then I will give them strategies on how to do it as safely as they possibly can. I still don’t think it’s ideal. I still think there are certain things that we can offer above what people can just do in their own garage, but also I think you have to realize that people will do it in their own garage and so you help them do it as safe as you possibly can.
Nick: I see. With that aspect of that handling, I guess, parent expectation or hope. I guess you’re very careful how you frame the treatment, saying it’s something we can try and there is evidence that it can alleviate certain aspects of autism but it’s, as you said before, obviously it’s not a cure and your dealing with something where you don’t even really understand the cause. So how do you frame it to parents in terms of what you expect to get out of the treatment?
Nathan: Well, yeah, I think it’s worth saying that there is not much that’s proven to actually affect the underlying causes or that underlying pathophysiology. Secondarily that, like every treatment, and this is something that’s not discussed in a lot of clinical situations because we just don’t routinely discuss it. But every single treatment we give for patients has basically three outcomes.
You’re better, you’re worse, or you’re no different, and that’s true for everything. Every single thing we do, you’re better, you’re worse, or you’re no different.
So in this situation, you just have to discuss it more intently because of the nature of the intervention, but there are certain interventions we do to people that are much worse than FMT, and we don’t discuss it at all.
Nick: I see.
Nathan: So I think, I don’t want to pick on a particular area of my colleagues, but oncology, for example, it’s a bit of a crap shoot. You need to explain that to people. You know, some people do very well out of their chemo. Some people don’t do any good at all but what you’re doing is you’re treating the average. And all of these trials that are done, Nick, they’re all about the average. If the average turns out to be better then we consider it a success, but within those averages there’s a deeper story.
They try to dissect out that story about what’s called subgroup analysis to try and find out which particular patients do better and which patients do worse. But in the end it’s a bit of guesswork with that. So I think in all clinical situations, patients should know, I could get better, I could get worse, or I may be no different. So it’s just an extension or an emphasis of that particular area. And you can tell off parents as well. So if they’re sensible and you’re getting through to them, you can tell and if they’re not, then you just keep talking until you’re happy. I don’t think they should ever be rushed into it, at all.
Nick: Thank you for being honest and upfront about that. Obviously, you don’t want to sell the idea of false hope to anyone.
Be an FMT Skeptic
Nathan: No, I think if you’re going to do FMT, I think you’ve got to be an FMT skeptic first and foremost. It’s not the solution to everything. It’s not the Holy Grail. It’s not, you know, it’s not responsible for all things. The gut floor is not the cause of all human kinds’ illness. It’s not responsible for Donald Trump or the rise of global warming. It’s not any of that stuff.
It’s been suggested for a whole lot of stuff. It requires a lot of further research, and that’s why I think generally it should be done in a research setting. But if you’re waiting for your particular illness to be researched, you’re be going to be waiting a while. So again, people don’t want to wait. People don’t want to wait, necessarily, until things are proven. So then that’s where this situation arises. Autism is pretty close. It’s in this [inaudible 00:13:14] is proven. Colitis is probably proven but difficult. And this is the third one, and the evidence is pretty good.
Nick: Outside of autism, are there any other conditions you’d treat a child with FMT for?
Nathan: Yeah, so colitis is a typical one. I think there’s pretty good anecdotal evidence that it probably doesn’t work for Crohn’s, although there might be some subsets that it does. Certainly ulcerative colitis is one that you would definitely consider, especially before something drastic like total colectomy, which is is not ideal at all for whole bunch of reasons.
So ulcerative colitis, definitely. Clostridium difficile, absolutely, earlier rather than later and there. And I assume they do have Clostridium difficile in pediatric public hospitals. They must have. So yeah. So there are two conditions definitely. Beyond that, of course, there’s a whole bunch of other illnesses that it’s been suggested to work for it just like in adults. I think especially in diseases that have established treatments, you’d have to be pretty brave to FMT kids with that. I think that’s when you get down to consent issues. When there’s not other treatment, it’s kind of a okay, but you know, if there’s other treatments that are available that are simpler, better proven, I’d be pretty reluctant on FMT’ing that.
Nick: I understand. Okay. Nathan, so we’ll finish up. But in short, obviously you believe in FMT, but you’re also very careful. I know you take extreme care with your FMT donors, and obviously you’d be happy to offer a consultation to parents considering FMT for their children or child.
Nathan: Absolutely. You’ve just got to talk it through. It’s not something you rushed into. It’s something you consider and talk it through and go from there.
Nick: Great. Well, thank you again for your time, and I’m sure we’ll do another podcast soon.
Nathan: No worries, Nick.