PANDAs, Autism, Anxiety and Depression: One Family's Miraculous FMT Healing Story

Hello and welcome to The Perfect Stool: Understanding and Healing the Gut Microbiome. This is your host, Lindsey Parsons, and today I have on the show Mary, a mom in Northern California who's used FMT, or fecal microbiota transplantation, to heal her whole family, from a daughter with pandas manifesting as anxiety and oral and tactile hallucinations, to a son with autism, and finally for her own anxiety and depression. It all started with treatments from a doctor in Australia and continued using her healthy daughter as a donor in the US. But before we get to the show, I wanted to quickly let you know that if you're interested in health coaching to start to naturally reverse your autoimmune condition or resolve a gut health issue or lose weight without dieting, I offer free 1-hour breakthrough sessions to talk about what you've been going through and see if health coaching might be the answer. Or I offer a 1-hour functional health and nutrition review related to gut health, autoimmunity, or other health issues if you just need some direction and ideas and a set of recommendations of where to go from where you are. So I'll put both of those links in the show notes, or you can also just go to HighDesertHealthCoaching.com and look under Work With Me. Now onto the show.

Hi, Mary, and welcome to the podcast.

Hi, Lindsey. Thank you.

Yeah. I'm so thankful that you're willing to come on and talk to us about your experience.

Thank you for having me. I'm glad to have the opportunity to share what I learned.

Great. So will you start by telling us about what is PANDAS and its cousin PANS?

Okay. So it's Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Bacteria. That's PANDAS. And PANS, I think, is Pediatric Autoimmune Neuropsychiatric Disorder. So it's, it's not specified to streptococcal bacteria. Strep A. I don't know what it could— it could be Epstein-Barr virus or just other illnesses that are causing an autoimmunity in the kid. So I didn't spend years. I think my daughter had PANDAS when she was about 8 when she got strep twice and Epstein and mono in the same year. But I didn't spend years studying it because I really didn't know about it until she had an acute episode. I really wasn't familiar. I didn't realize that she had it.

Right. And when did you first suspect that she might have it? How old was she?

Well, that's when she had— she was 16 years old when she started telling me that she was having very severe anxiety, both social and generalized. Just around the time she turned 17, she revealed to me that it was more than just anxiety, that she was having hallucinations, both tactile and auditory. Voice telling her to harm herself and really scary stuff. So that was when she had just turned 17 last February.

Now, my understanding was though that you think that it started much earlier, but that was just when she really revealed the full extent of it to you?

Yeah, when she was 8, ever since she was 8, I never felt comfortable. I saw a change in her, but oh, it's sort of one of those things in retrospect, you put it all together. But she had— when When she was 8, she got a pretty bad case of mono with a swollen spleen. She also got, and was sick for months. She also got strep throat twice, for which I gave her antibiotics, a full run of antibiotics. And ever since that year, that winter, she just became very withdrawn. I remember she wouldn't take her hat off for a full year. She wore a hat to bed, to school. And she just was, every time I went to pick her up at school, she'd be sort of outside of the circle and just looking very uncomfortable. In her own skin and stopped being invited to parties and just sort of started isolating and was just reading books 24/7. And so I always worried about her. Every night I went to bed just worried she wasn't— something wasn't quite right. But she was otherwise thriving, doing well in school, and just seemed to be an extreme— have become an extreme introvert as far as I knew.

And then it really seemed like a switch from her previous behavior.

Yes, she was a delightful, beaming, popular, happy chatty little girl. I remember we drove across country once when she was 5, and I remember commenting she never stopped talking the whole, the whole drive. So also, she sort of lost her affect around then. We started calling her phlegmatic, like she just seemed quiet and just hard to get her to show much affect or enthusiasm, sort of yes/no answers, things like that. Just always reading in her room. Even during a family party, she would be off in a corner just reading a novel. So I just— but when things happen slowly before your eyes, sometimes you just don't— I don't know, you just don't see it as clearly as— but I used to go to her teacher and say, "I don't feel like Kate's fitting in," and I would do that and everybody would be like, "Oh no, no, no, you're just overly worried," that sort of thing, how people tell moms they're overly worried about stuff. So, but then, so in fact, when this all happened, when she was 16 turning 17, it was almost— it was petrifying, it was horrifying, but it almost was like, oh, here's my answer. Like, I knew there was something wrong, so, but I didn't know the severity of it. So she told me what was going on. In my limited knowledge of psychiatry, when I heard auditory hallucinations, I just thought, oh my God, she's becoming schizophrenic. So I took her to a psychiatrist and luckily because my son has autism, we have a long history of him being a patient with the head of UCSF Child and Adolescent Psychiatry, University of California, San Francisco. And so we were able to get her right into him and he's a pretty famous experienced psychiatrist. So he tried to assure me that she actually was not schizophrenic. These were just all extreme manifestations of extreme anxiety.

And how else was her anxiety manifesting itself?

Oh boy. Well, she could barely go to school. She was fearful of people. She was hearing a voice telling her to harm herself and kill herself. She was hallucinating that she was being attacked. She even— and these are the things she would even tell me. She didn't want to scare me with other things, but mainly she just— she knew— she knew enough to tell me, like, she— that it was happening to her, as opposed to, you know, I guess if you're completely schizophrenic, you wouldn't say, gosh, I'm hearing this voice. You would actually think it was real, sort of. So she, on some level, she knew it wasn't real, and she was really trying to— in her very pragmatic way that she is, she was trying to help me help her. And so she was And luckily we have a good open relationship, and so she was communicating with me everything that was happening with her. And it didn't—

so it sounds like for you understanding about it, it came on suddenly, but for her this was a gradual process of it getting worse, right?

Well, for her, okay, so no, it was pretty acute. In December of her— when she was 16, she had some kind of bad cold virus sore throat thing. I don't know if it was strep or not. Now I think it probably was. And she had an acute onset of anxiety. And then she— the voice became mean and all that very suddenly. And she revealed it slowly to me from December to February. But she told me she— since she was about 8 years old, and she just said that age, not putting together when she was ill or anything, that she's always heard voices. And she— since then. And she told me, I used to think it was the horses, because we have horses. And she said, I used to think it was the horses because they were the only other beings around me. So I used to think the horses talked. Now, this is a straight-A student on her way to an Ivy League college now. I mean, she's a very smart, intelligent kid. So she used to describe it to me as just hearing a voice narrating what was happening. So I went home with the doctor telling me it was just extreme anxiety and, of course, got her into a lot of therapy and started reading, I just started researching hearing voices because I had never heard of somebody hearing voices that didn't have like schizophrenia or some very severe mental illness. And the first thing I came across was this one guy in England who said, who was just talking about how he had this voice his whole life and it was never scary or mean, but it was always there. And when he was in his 40s, he got a prostate infection. And ever since that treatment, he never heard the voice again. And that was all. He wasn't trying to make any connection or anything. He was like saying, oh, I sort of missed the— I sort of missed the voice. Because there's actually like voice hearing groups. People get together and discuss their voice hearing. So I thought, well, that's weird. What's the— what's the treatment for prostate infection? So I looked it up and it was antibiotics. And I was like, I wonder if this is just a germ, a microbe. So that's what started me just thinking that maybe this is just a microbe. And it also was with me all this time that she started hearing it right around the time that she'd been sick. So anyway, so I started thinking that this was physical, not just— I just felt that her life didn't warrant that level of anxiety. She'd had a pretty nice life, right? And so I started thinking this was more physical. So I I started— I had heard of PANDAS because my son has autism. Unfortunately, I'm pretty familiar with a lot of childhood neurological disorders. I've spent a lot of times in neurologists' offices with my son. And— but PANDAS, when you think of PANDAS, the sort of hallmark is tics and OCD. And it's also more common in boys, supposedly. So— but then I started— I don't remember exactly when, but I just started reading about it more.— so my daughter said she had some OCD compulsions. So, so I started looking back at pandas a little bit for some reason, and I started reading that hallucinations was something that was not uncommon in pandas. And I started reading stories of anecdotal stories of parents, like a little girl saying, Mommy, I'm not going upstairs. That bad man is telling me he's going to kill me if I go up the stairs.

And the kind of, the kind of stuff that my daughter had been telling me.

And so that's when I started suspecting that it was PANDAS. So I made a telephone appointment with a doctor in Illinois who's a PANDAS specialist. And he said— I gave her— I gave him her, her bio and he said, I strongly suspect PANDAS. And I looked at what their office did and they did I don't know, different antibiotics. And then the ultimate treatment is IVIG, intravenous immunoglobulin treatment.

Mm-hmm.

So just coincidentally, or because this is my life, at the same time as this was happening, so now, now we're a few months down the road, we're in around April where she'd been with the psychiatrist. We've been trying meds. Oh, and some of the meds were, you know, making her so much worse. The SSRIs made her have suicidal ideation. And so we've been going through the process of trying to work with meds unsuccessfully. So now it's April and the news comes out that the ASU autism study and what a success it's been for autistic children.

Yeah.

By the way, I have— I have— for those who are just tuning in for this as their first podcast, I have an entire podcast with the researcher who did that study.

Oh, I need to listen to that too. So, so people put that to my attention because of my autistic son. So as I started reading about it, I start and realizing what it was really indicating was that our immune system is in our intestines and in our digestive tract. And so as I got excited about trying it for him, I just became convinced it would work for my daughter with PANDAS.

And though we haven't said what it is, the fecal transplant is an FMT.

Oh, I'm sorry. The fecal micro— biome transplant. And so the more I started reading about it, the more I started getting excited for her and feeling like it could be an answer for her. And this is just a complete layman's— I'm a lawyer by profession. I have never taken a science class or anything like that, but I do have a lot of— I have spent years around an ill child with a bad gut, which was my autistic son. His gut went bad around the time that he became autistic. And anyway, I just started—

I—

the more I thought about it, I thought, well, this would be the answer. I feel like this is getting closer to the source than even IVIG, which puts the healthy stuff— here's very layman explanation— but in the, in the, in the blood. Well, I, I just thought, well, wouldn't getting right to the immune system itself in the, in the digestive tract even be closer to the source of healing than starting at the blood. So I just made the decision. I'm kind of a high execute personality. I took one of those Myers-Briggs tests once and I was very high execute, but I just decided I was gonna get it done for both of the kids. And I have to say, my daughters— my son had been autistic for a while, obviously, 17 years, and was stabilized. So it wasn't an emergency, but my daughter, it was an emergency. It was life or death. It was life or death situation.

And how did you, how did you choose the clinic you chose in Australia?

You know, I just started Googling around. I literally just Googled and then I found his name came up quite quickly, Dr. Froome in Melbourne, Australia. And then when I started reading about him, he— I realized he had studied under Dr. Baroti, which is who led the— who's really the guru of all of this and who oversaw the ASU study. So, and then I looked at prices. There's other— there's Tame Out Clinics, there's other places like that. So I decided on him because he was a gastroenterologist, an actual doctor, and they used donors who were fresh, not freeze-dried frozen material. And the price, since I was doing 2 children, it's extremely expensive even for 1. And the price with the exchange rate and the economy in Australia, the price was better than the other options.

Can I ask what that was?

I think it turned out to be— it was all— it was about $375 per treatment per day. So that was $750. I told you, $750 about per day for my two kids.

How long were they gonna— did they want to treat them for?

Well, so the protocol, the ASU protocol, had just come out. So even people doing FMT were just wanting to— he wanted to mimic the protocol. So that would be 8 weeks for my son. He said for my daughter, who was extreme anxiety and pandas, etc., he, he thought 3 weeks. So he also said, bring your— we happen to have another child. He said, bring your healthy child. Well, we could test that child to be a donor if you needed to in fact go on for longer than you can afford. At the clinic. So that was the other reason I chose that particular doctor. Probably the, the, one of the main reasons was that he would test our other child to be a donor. I don't know of any other clinics that do that, although they might.

And so tell me about your other son with autism. When was he diagnosed and what were the nature of his GI problems?

Okay. So he was diagnosed at 2 and a half. And he has had— just had never had a normal— he had never had a normal stool from around that time on. It was always diarrhea. If it was solid, it would be— it could be strangest colors, like, like almost pure white, light gray. But mostly he was going several times a day, and it was just diarrhea for years. And it always scared me. Because I always thought, you know, God forbid, forget about the autism, he's going to develop, you know, he may very well have had irritable bowel or ulcerative colitis. I don't know what. All I know is he had chronic diarrhea his whole life.

But he was never treated for that or diagnosed with anything?

For some reason, the few times I tried to bring him to a gastroenterologist, mostly at UCSF, the appointments never got made, the referral never went through. And then it would fall off the wayside of a mother with 3 kids with sicknesses, right? So it was just something like that. It just never happened. The referrals never seemed to materialize into an appointment. Mm-hmm.

Okay, so at the end, how soon were you able to go to Australia, and how long did you stay there and go through treatment with each child?

Okay, so I had the telephone appointment with the doctor. It was over Memorial Day weekend, I think, so late May. And then they said their next availability was July 1st or 2nd. And so we flew down there as a family, my ex-husband and myself and the 3 kids, and we flew down there and we did 3 weeks of treatment there, 5 days a week.

For both kids?

Starting for both kids. And in the meantime, they tested our other child, and that took longer than you think. There, there, it was very thorough. It was a lot of blood and it's hard to take a lot of blood from a child. So we did it over days. And in fact, for all the results to come in, it took just about the 3 weeks. And I ha— and I have to say that doctor's office was— one test came in unequivocal and they were like, it's an, it's gonna be a no-go if this test— and then they resent it and it was fine. So they were extremely strict in their finding who could be a donor. And I think only 3% of people or so actually would pass as, as a donor. But thank, thank God to the universe, she, she passed as a donor, um, and everything was perfect.

And how did they do the FMT in the clinic? Was that like through sort of a colonoscopy type treatment, or—

So, well, I should say he had us do vancomycin. We did vancomycin for 10 days for both the kids because we were, we were copying the protocol of, um, the ASU study prior to leaving, or Yeah, they sent it to us.

Right.

And then we arrived like a, the day that the vancomycin ended. And then they, the kids took kind of like the same stuff you would take if you were gonna get a colonoscopy, some liquids to just clear out their colon. Mm-hmm. And they didn't eat for a day. And then when we got there, I was pretty surprised. They just sort of handed us the, so, so the material comes in a 60 milliliter syringe.

Mm-hmm.

And, and there's a, a long soft catheter that you attach.

Mm-hmm.

And you, you lubricate that and you just thread it into the anus and you plunge the liquid from the syringe. It's really easy.

When you said they handed it to you, they had you do it, or they just handed it to us and sent us home to do it?

Seriously?

Which was, which was really surprising to me, but they were sort of like, don't worry, you know, it's not a big deal. And it wasn't— it was actually the first day or two, it could be a very big learning, messy learning curve, but then it's really easy. And I think anybody can do it.

And how far in did they want you to put the, the, uh, end of the tube?

It can go— it's like 18 inches long and it can go, you know, maybe— I started out putting it just a third. It doesn't matter, but I, I put it in at least halfway. And my daughter, it never hurt her ever. My son, he would flinch at first, and I think it's because he had a lot of inflammation, right, in his from a lifelong history of diarrhea. So with him, it, it, it, he would flinch and he would say, be gentle, and it, and it hurt him. So we did a little bit, but you know, after the first few times, it didn't hurt him at all either. And then the going in and the whole process, it's really, it's painless.

Mm-hmm. And I have to, I have to say, your kids are incredibly good sports. Like, how did you get them on board for all this?

Okay, well, my daughter really trusted me that She was obviously suffering greatly and she wanted this to end and she really trusted my instincts that this— and I had her read the materials too and I asked for her opinion. She's very smart. She's probably smarter than me. I said, you know, you read these materials and see what you think too. And she said, you know, it's like, it's worth a try.

Yeah.

Makes sense. So we agreed together. My son was a little more difficult and if he were younger, this might've been a lot more difficult. But I told him, this is— we're doing this because it will make your tummy better. And when your tummy gets better, your brain will get better. Your brain will feel better. And I never know how much he really understands me or not. Sometimes I think he understands everything. Sometimes I don't know. But he let us do it, but he was mad. He punched his dad the first time.

Wow.

First time we did it, he leaned over and punched his dad, which is not something he does. And we were both very stunned and freaked out by that, but it was in the arm, you know, but it was hard. And so, and then after that, he just, he just accepted it, and he actually asks for treatment at this point.

And he's 17, so, or he was 17?

No, he's 21. Oh no, he's— she— my daughter was 17, he was 21.

Oh wow, okay, so he was an adult. Okay, but he's still living with you, and he's obviously not functioning at the point where he could be by himself, or No, he can't be by himself.

He was considered severely autistic. He was in the life skills classroom. He needs a companion 24/7.

Okay, right.

And he had— okay, go ahead.

No, no, that's good. Keep going.

Okay, so his story was he started— you know, you don't feel great for a week or so, but by the time we were done, he was having solid brown stool. I can't tell you the miracle of all miracles. I have never seen that. And so his gut, it appears healed right up. He's lost 50 pounds. He was obese.

Wow.

He's lost 50 pounds. He's got—

without any diet changes?

You know, there is a slight diet change. The doctor is very big on high fiber.

Okay.

And so I did reduce his carbs and make sure that he has a salad at every single meal, but nothing that would justify 50 pounds. He still is a hearty eater.

Yes.

So, and we were already organic and things like that, but I will say we reduced carbs and yeah, and really added a lot of greens. But calorie-wise, he still was eating a lot. So he lost 50 pounds in a few months, and I'm gonna say 4 months. And he used to stim nearly all day long.

Can you just find what that is?

Stim is— it's different things that autistic people do, but with my son, it was constant vocalizing, like, aye, oh, just making sounds. We called it singing. Sometimes it would be just phrases that he would say over and over and over and over again, but constant vocalizing. And he does that. That's pretty much stopped. I'm gonna say 5 minutes a week from from constant. So he's much calmer in his own body. His language is flooding in. He speaks full sentences now instead of short and chopped. They're still slowly thought out. Like, you can see language. You can see— so it's this really slow but definitely remarkable progress that he makes. Like, for instance, and you see big and little things. Like, I actually sat there one day and watched him work out that he can now say the letter, the S sound. Like he would say no and knack for snow and snack because he'd always say a tiny little knack, meaning he wanted a snack. And he started just going S, no, S, knack, S, snack. And he just realized he could say the S sound and he started using it ever since.

And what would be an example of a sentence he would have said before versus one he would say now?

So before, maybe he'd say, "Bye, Mama," or "Go school, Mama." Now he would say, "I will see you after school, Mama." So, or just they're longer, but they're still slow and like the cadence is still very non-natural. But so you don't notice until you realize, oh my gosh, it's every single word, every single article, every single word is in the sentence. It's not a clipped phrase, but he still says it in a very deliberate pause between each word. But so, but he could say like, you know, he'll, he will just use full sentences like, the school bus is coming. Or I'm trying to think, you know, is Kenny coming over tonight? Whereas before it might be, Kenny coming? Something like that.

Right. Right.

So, so his language is definitely coming. The school says it's been the best year he's ever had. He's been at that school since he was in second grade.

Do they know what you did?

Yeah, they do. They do. They were, you know, excited for us to give it a try. I mean, and the doctor who's a psychiatrist is affiliated with the school. His psychiatrist has also remarked on how amazingly he's doing and congratulations and stuff like that. But he's so— he's just great. He's easy to live with. He's not— you know, it's funny because I— he's 21, so I don't go around having him tested anymore. That seems to be something that people— you do when your child is younger, right? I sort of let go of all of that. But I, it would be interesting for me to see, you know, what points he has lost on, back when he was a kid, it was the CARS scale. I think it's the ATEC scale now. But so really he doesn't do that much that's autistic anymore. It's more just like his brain is still recuperating. Yeah.

A lot of catch-up to do.

Yeah. Yeah. The only thing he does that, that I would like to see decrease, and it has decreased, but I'd like to see decrease more, is he's still a little obsessive. He still wants to talk about his schedule a lot. He still wants to ask, confirm the schedule a lot, you know, Kenny's coming Monday at 5:15, you know, that, that sort of thing.

So yeah, so we're now in mid-January as we record, so basically it's about 6 months plus since you did this. Yes. Right, okay.

Yeah, we finished— well, yeah, yeah, we started in the early, early July.

Okay, so, so tell me about— because I know that you, you started at at the clinic. Tell me about what happened when you got home.

Okay, can I just tell you about my daughter's—

sure, yeah—

progress? So what happened with my daughter was, was remarkable. So she— when we got to Australia, it was— she was still full-on having hallucinations, having tactile hallucinations, suffering extreme anxiety 24 hours a day. The first week, I just decided not to ask her. I just decided to leave her be and just not ask her anything. By the second Midweek, second week, I said, are you feeling any differences? And she says, yes, in her typical phlegmatic way. Like, yeah, yes, I'm feeling better. And I'm like, okay, so how much were you experiencing anxiety before you got here? And she said, 85% of the time. I said, how much are you experiencing now? She said, 15% of the time. This was 8 FMTs in. I asked about the voice and she said maybe just a few times a day. By the third week, at— by the end of the third week, she had no symptoms left at all.

Wow.

So that's where she was at when we left with the good news that the other child could be the donor. So my daughter who got the treatment is— despite her suffering through all of this, refused to quit any activities, and she was a president of a student organization, and she needed to go to a 10-day conference, and we decided to let her go. I went— I was in Los Angeles. I went and stayed nearby just in case, but she was separated from her sister for those 10 days.

And you had been continuing treatments using her sister as a donor since then?

Oh no, I'm sorry, we left Australia, flew right to the conference. Oh, okay, straight to the conference. So we were going to meet back at home and start up with the other daughter. So the first few days of the conference, my partner and I were just, just celebrating the change in her, the affect, the smiles, the chatting, the just like, who is this kid? We, you know, we got, we got back. And by the 9th day, she came out of a— she called me. It was the 9th day, the last day. She called me. She was supposed to be speaking to hundreds of people, which would make anybody nervous, and leading a group. And she said, it's back, you know, the voice is back, it's threatening me, all this stuff. So I was deflated beyond words. I thought the whole entire operation had just been all for naught. But I said, okay, listen, we just— we just got to get you back. We went too long without treatment. So because I saw it sort of slippery slow, I saw Around the 8th day, I started saying, she's seeming a little shy, she seemed a little nervous when I was driving to drop her off, you know. So anyway, we took her back, we started treatment, we resumed treatment with both her and her brother, with her sister now as the donor. And the deal with the sister was like, I need to have a life too, and she's very social and has— she's on sports teams and she likes to sleep over friends' houses and do different things. So because of that, we were only able to get the treatment about 3 days a week. I would have liked to have it every day or at least 5 days, but we were able to get it on average about 3 days a week.

And you'd split it between the children then, or—

I split it between the two of them.

Okay.

And they just sailed. They just took off from there. My daughter has never had another relapse. She still will say stuff to me, like we were back, we were back east looking at colleges in It's pretty late, a few months ago, and I took her— oh, it was around— it was in October, and I took her to Salem. Silly move. I took her to Salem, you know, see the witch museum and stuff like that. It turned out to be mobbed. It was more mobbed than Disneyland. And I just remember her turning to me going, wow, Mom, I don't mind being in large crowds anymore. No, it doesn't affect me at all. Like, she just— she just can— she has— she has zero anxiety. She's social. She started dating. She almost doesn't remember where she was at. I mean, she's just like, she doesn't even feel shy anymore. And so she's comfortable and she's animated and she chats. And when we have a family party, she's part of it instead of reading in a corner. She's just come out of whatever. People even just see pictures of her and can tell her whole affect is just back.

Wow, that's amazing.

And so then we did the treatment for about 3 days a week for all of August, September, October, and by November-ish we started slowing down to just when we can get it, just sort of maintenance. Everybody just was tired of doing it. Yeah, I would have gone forever.

Can I ask you how they told you to do it at home?

How they told me to do it at home?

Yeah, like did you use a blender or did you just sort of mush it up with some distilled water or how did you?

I started with a blender and then I heard that that could be too much oxygenation.

Mm-hmm.

So I, what I do is I put it in a, like a gallon-size Ziploc bag.

Mm-hmm.

And I pour saline solution over it and I mix it with my hands from the outside.

Mm-hmm.

Until it's a slurry, until it's mush, and then you strain it. The, yeah, then you have to pour it through a strainer 'cause if you get even one seed or, you know, 10% of poop, I think 10% is fiber. So you strain it to get the fiber out.

Mm-hmm.

And then I just would suck it up into the syringe. Mm-hmm. And attach the catheter just like I was doing in Australia. It's a very quick learning curve. It's, it's like the first 2 days, it's just a disaster. Don't wear anything that you don't want to throw away, stuff like that. And then, but it's a really quick learning curve. And the biggest, the biggest thing is just if it's not going, don't force it because then it will just explode backward. If it's not going, it means there's a seed or there's something stuck.

And where are you getting the syringes and all the supplies? Did you bring those home or—

No, I'd ordered them off Amazon.

Okay. And what kind of syringe, just for anybody who might be thinking about 6—

60-milliliter catheter tip syringe. And then the catheter is called a soft catheter for a 60-millimeter syringe. And they're clear, soft plastic, and I think they're about 12 or 18 inches long.

Okay.

And that's just what we used. It's not like set in stone that you have to do that size. That's just the size they did at the doctor's office, so I copied that.

Yeah, well, that, that's a different— that's an alternative from what other people have said where they've used maybe disposable enemas or Yeah, I like this better because the further you get up the colon, the less you're gonna have—

one, I figure it just gets further up, right? But two, the less you're going to have that, that, that urge to want it, like feeling like you have to go to the bathroom, right?

And would you do it typically after your children had had a bowel movement? You would then do it, or did you have a certain time?

Usually ask them. Like, we tended to do it at night, that just when we happened to get the treatment and everybody was home. Mm-hmm. And I would make sure that they would go to the bathroom before, or at least didn't have to go.

Yeah.

And you keep it fresh.

Uh, yeah, they said, they said not to refrigerate it.

Mm-hmm.

Okay.

So I would pretty use it within a few hours of getting it. Mm-hmm. And then I would, it became routine for all of us so quickly.

Yeah.

I bought, I bought those pee pads for puppies, you know, mm-hmm. To put on the bed and then, and then you just, a lot of people won't do it on a bed. You know, they just do it. So, but I would put it on the, the pee pads on the bed just in case. And like I said, by the third day, you're just an expert. But, and then they would just lie on that and then you do it. It takes, you know, less than, it takes less than a minute to actually do it. It's the preparation time that takes some time. And then they lie on their left side for 10 minutes.

Mm-hmm.

Then they lie on their back for 10 minutes. Then they lie on their right side for 10 minutes. And then I'd ask them to, just lie around for another half hour or so. Usually my son would go to sleep because he goes to bed early. So it would just be sort of his before his bedtime routine. And then my daughter, she'd sometimes get back up later and go down and cook or do whatever. But it doesn't— it's, yeah, it just, it wasn't painful. It wasn't that intrusive even, you know. And also, now my son wouldn't have been able to do it himself, I don't think. I mean, I probably could have taught him, but just with the autism, it's like, why bother? My daughter probably could have done it herself, but we had gotten over the modesty hurdle. And so I just, it just was easier for me to do it for her.

Yeah. Okay. And I understand that after all this, you started treating yourself.

I did, because I've had a lifelong, for a few reasons, I've had lifelong anxiety and depression, not crippling, but it's always been there. Actually, the anxiety had been crippling at times in my life, very much so. And also a family shares a microbiome. So I thought, you know, what if I'm like the weak link that's going to keep me infecting everybody? So I just decided to try it. And I have— my anxiety and depression disappeared. It just disappeared after trying it. Yeah, after like the second time.

Wow.

And I only did it 10 times total. And I have this— I had developed this really annoying driving anxiety. And living in California, we drive everywhere. And I couldn't get on the highway without having full-on driving anxiety. And it was really limiting and annoying to everybody, especially me. I would have full-on attacks, like where my palms would sweat and my heart would be pounding out of my chest. And I, I feel like I'm just gonna let go of the wheel. And it was just a horrible thing. And it really started restricting where I would go. And that went away right away.

Wow.

Yeah. So it helped me too.

And did you prepare yourself?

Like, did you try and take antibiotics and I did not take antibiotics and I sort of cheated. I came home from the doctor's office, from the place we went in Australia, you could either do the antibiotics or you could do a natural version of some sort of cleanser. So I had these two bottles that I had brought with me that you're supposed to do for two weeks that would totally cleanse you out. It was all kinds of herbs and it was antiparasiticals. These were, but natural, natural antiparasite, natural antifungal, natural probiotics, natural antibacterials, that sort of thing. For some reason, I don't remember why, but I only did it for a week. I should have done it for two. Oh, I know why. I had a colonoscopy scheduled, just a regular routine colonoscopy scheduled that had been scheduled for a long time. So I thought I'll start right after that. Because they make you clear yourself out.

Right.

So for some reason, I didn't remember to start taking those, those pills in time. So I did one week's worth, did the colonoscopy, and then went home and did the 10 FMTs.

And did you do them sequentially, like one day after another?

Almost. I got pretty lucky. I mean, you know, maybe I missed a day here or there, but yeah, within 15 days I had done 10.

And so you've— since then, you've stayed— no more depression and anxiety? No.

Now, at first I was buoyantly— it was like I got a burst of— all of a sudden I was cleaning cabinets and tackling all those jobs that I never had the bandwidth to do before. Then I kind of settled into— I'm still a better housekeeper than I was before. Like, I actually make my bed every day. I never have done that. But yes, I don't have the depression and the anxiety, but it's kind of like my new normal. And my stool looks better too. It's wider, it's bigger. You know, and so, yeah.

Wow, that's amazing. So imagine there's a parent out there listening who couldn't imagine coming up with the money to do FMT in another country but may have a viable donor. What might you say to them?

Well, I would say the one, the one step I would not skip is making sure that the donor got completely tested. For everything. And I don't know, now there, and there is an international donor protocol out there. I've posted it on Facebook. I, you can Google it and it tells you every single thing to test for. And it's blood, urine, and feces. And I, I would just make sure that that testing happened because it's nothing to mess with either, you know?

Yeah.

There's all kinds of stuff you could be passing too.

I'll see if I can get a link to that and post it.

Okay.

And what about the ick factor? What would you say to them if that's sort of what's stopping them?

Oh, I think you'll get over that within a day. Mm-hmm. And everybody I know has, especially if it's something that's helping your child. People ask me about that and I was like, are you kidding? This is like the golden elixir of life to me. It's saving my children's lives. Yeah. So if you have a very sick child, you're gonna get over the ick factor very quickly. Because it's just a miracle that we have such a beautiful natural solution right there all along. Yeah. But you do have to do that testing.

So have you been telling everybody you know or are you trying to protect your kids' privacy?

A little bit of both. I tell people that I know. I've been trying to tell people. I've been telling Panda's website. I've been putting it out on Panda's websites and things like that just because I haven't heard anybody really looking at it for pandas yet. But, but since then, so I've been trying to plant that seed. But since then I've seen that there are, there's been people also thinking about it. I don't know many people who've done it, but there's even been doctors who've been start pandas, doctors who've been recommending it to their patients. And I've heard things like that just on Facebook pages. So no, I'm not doing a great job at anonymity. I don't mind about my son at all. My daughter, oh, she'd probably be horrified. So I'm torn between trying to protect her anonymity and really wanting to not, you know, the idea that other kids could be suffering the way she was when there's a simple solution is just an unbearable thought.

Right.

So I'm trying to balance anonymity with getting the word out. Now, didn't—

the way you described her personality changing though, didn't people notice something really big in her?

She said her friends did, but her friends knew that she was having a hard time. Everybody knew she was going through some severe anxiety. She'd missed a lot of school, and she shared with her closest friends. And I've shared with my family, so my family notices. The people I've told notice, you know. I've shared with a few best girlfriends, things like that. And the people— even people who just know but have only seen her on Facebook Or like, I can just see, I could just see in the pictures, you know, she just seems so different, her whole demeanor. So she had just had a darkness pulling in, she was fearful, this on her face and a lack of affect. And it's just, she's just off and running, she's doing beautifully.

And what about with your son, his, his affect, has that changed at all?

Well, he's more, he has always been kind of bubbly, but he's He's so much more present. Like, I put a picture up of before and after picture on Facebook and people couldn't even believe it. Like, he went from just being— you could see he's just sort of fighting whatever the interference is that autism causes. So he's just present. He's looking you right in the eye. He's listening to what you're saying. He's calm in his body. He wants to be part of the group instead of hiding from the group. He's just— he's so hard for me because he's— I see him every day and like, it's other people who are like, Mary, can you believe? Look, can you believe? I can't believe how he's doing. This is a miracle. And I'm like, really? Because, you know, I see him every day and I'm— and I, as his mom, I keep hoping for more. Like, I want to hear him say things more abstract or, you know, but it's, it's pretty remarkable. How he is— he's more friendly. He goes up to people and introduces himself. Oh, he's not afraid of dogs anymore. He was petrified of dogs. He's not, even though we have dogs. So he's just more comfortable. He just feels more safe. He feels more balanced.

And has his independence and his need for accompaniment changed at all?

His— he still— I still wouldn't let him be anywhere without, because he looks so normal. He looks like a handsome young man, and he likes— for instance, the other day He was outside alone when he was with his dad at a relative's house. He loves cars, so he was looking in all the car windows while he was waiting for the rest of the family to come outside, and somebody called the sheriff, and the sheriff came because he looked like a young punk trying to maybe steal a car, right?

Right.

So I wouldn't have him alone for that yet, but his independence, his desire for independence has exploded. I can't even— if one— like, when we go to the store, he has to do the ATM. He doesn't want me to do the ATM. He wants to pump the gas when we go to the gas station. He is constantly doing chores around the house. Like, his new mantra now is, Ryan, do it. Ryan, do it. You know, meaning I'll do it myself. Yeah. So yeah, wow, he's doing really, really well.

Well, these are amazing stories, and I am so thankful that you shared them with us because I'm sure there are a lot of other parents out there with kids in the same situation situation, and it makes a difference to really hear the story from start to finish.

Oh, good. I'm really glad I was— before I hooked up with you, I was meditating on ways that I could get this information out, because I really think we can't be that unique. Yeah, it's got to help other people too.

Well, that's, you know, that's how I feel, because there are so many situations, so many illnesses where the current medical model simply isn't doing the trick fast enough, and sometimes you have to take things into your own hands.

Right. Oh, and the other thing I would like to add is a lot of people have said, oh, maybe your daughter's a super donor and this and that. And you know, she's a kid, she sneaks sugar. She, she does eat healthy, the donor, you know, and she has never been on antibiotics, but she's a kid and she sneaks junk food just like other kids. So like, don't let perfect get in the way of the good. I mean, you need a, you need the donor to be safe, but right. You know, generally if somebody's a lot healthier than you, they might, they, there's a possibility.

Yeah.

They could be a good donor.

And generally they want it, they want them to be under 25 is my understanding.

Yeah. And over 2, I don't know a lot about that, but yeah.

'Cause the microbiome's not settled until then.

Yeah. And I think children, they just, you know, pre, for instance, pre-sexual relations, there's a whole lot you don't have to worry about.

Right. Right.

Things like, things like that. So, um, but. Regardless, everybody has to get tested for everything. But absolutely, it's been a miracle. And I think the reason I just, you know, you have to weigh, do you want to do it just to feel a little bit less tired? Maybe not. But if you're in a medical emergency, you know, yeah, it makes more sense. So yeah.

Well, thank you so much for sharing with us. Is there anything you wanted me to ask that I didn't or that you wanted to add?

I can't think of it. I can't think of anything right now.

Okay.

I would just like to— yeah, no, I think, I think you pretty much got the whole story out of me.

Okay, great. Well, do keep in touch, so, you know, and tell me about how, how your son continues to develop. I would love to catch up with you in a year or two and see if I'm still doing the podcast. And you're—

oh, that would be wonderful. I would, I would love to keep in touch.

Thank you so much for coming on.

Thank you so much, Lindsey. I really appreciate it.

Well, I hope that story will inspire some of you who are sitting on the fence about how to start to address your or your children's health problems and give you the courage to move forward. If you're interested in FMT and have no viable donor that you know of, microbioma.org is an online stool bank tool that you can use to find a possible donor and connect directly with them. And if you know someone who would be a great donor because they're in excellent health and they're young and and they haven't used antibiotics and have no STDs or anything like that, not that they'd tell you, then you can also suggest that they become a donor at microbioma.org. And if you like the show, I would ask that you please check out our Patreon page at patreon.com/theperfectstool, and I'll put that in the show notes, and consider supporting the show at a $2 a month, $5 a month, $7, or $10 a month donation.

I really appreciate your support.

So thanks for listening, and here's wishing you all the perfect stool.