Interview with two scientists discussing deep sleep, the bedwetting problem and bedwetting program and treatment for bedwetting.
Erica: First let me just say, the wetting has been part of our lives — he wet basically every single day of his life. It wasn’t just an occasional thing. So it was a real problem, and It became clear he wasn’t outgrowing it. We had tried some behavior therapy, we had tried an alarm, and it didn’t wake him up sufficiently. It was getting really frustrating.
We talked to our pediatrician who said the alarm is the best thing. One time when he went away to camp, he used some medication, which actually didn’t even work that well. We were never planning on that as a long term thing. It was just to try so he could go to camp.
Erica: We really were frustrated, and I came across your website during some of my investigations. Quite frankly, my husband and I are both researchers. We’re scientists. I was struck by this information on the sleep cycle that you had in your description of the problem. That caught my eye for a couple reasons. One was this disruption of REM sleep that was discussed. Jerry never remembered having dreams, and I always thought that was really strange, and so that resonated as true with our experience.
Then I went back to the actual scientific article that you cited there, and read some of the research. This paper in Science, which is one of the premier scientific journals—we know it has hard criteria to get in. So that was the original paper that was cited. I was actually really surprised that not many people had done anything with this.
I was really struck by your story about finding this information about the sleep cycle, and following it up to help your daughter. But I filed the information away for awhile, and still things weren’t going very well with Jerry. We finally decided —he was 9 and a half, almost 10, and we said we have to do something about this. I was a little concerned that it was, you know remote—we are in CA and you guys are in MI, but I decided to have a phone interview.
Gaile is who we spoke to for the first time, and she was great. It sounded really —I was impressed by what appeared to be the comprehensiveness of the program. It was working to address the sleeping problem, which is the core of bedwetting problems, I now understand.
Jerry: Which is somewhat counterintuitive and not well-known, I should say. Most people don’t think of it as a sleep disorder or problem.
Barbara: Exactly. They know the child sleeps deeply, but they don’t connect it to being the cause of the bedwetting.
Erica: Right, but we knew something was up with Jerry. Number one, the dreaming thing I always thought was very odd. And then the alarm thing…we bought one of the more expensive alarms, but he didn’t wake up. The pediatrician suggested we get the kind that a hand comes up and slaps you in the face. (laughter).
This notion of being in a deep deep sleep never came up, but it kind of rang true for us. Deep sleep bedwetting is what our son was experiencing. Seeing that this scientific study on the EEG pattern to corroborate that convinced me at least that there was a sound basis behind your approach. I was impressed with what Gaile told us about the various elements of your bedwetting program, and we set up our first appointment. We just decided we needed to try something.
The way the program worked with the private phone meetings every two weeks, the forms, and the help available whenever we needed it. Even though there were several stages involved, and as long as everybody’s committed to making it work, it’s a very comprehensive program, and it’s not that hard to follow. I think you guys make it easy to keep track.
Barbara: It’s a complicated bedwetting problem, but without our guidance and education, it would be enormously difficult. You said you failed to stop bed wetting for your son.
Jerry: That’s what I’m impressed with, actually, is the kind of systematic way you approach this. From sleep, bladder, muscle control; from a brain perspective. You’re really hitting all parts of the body. By the way, one thing that Erica and I agree on—I’m sure you guys are doing this— but most of the pediatricians we’ve talked to have never heard of this, and they really need to know about your bedwetting program.
Erica: That’s where people go to with this…they talk to their pediatrician.
Jerry: Our pediatrician was telling us he should take the medicine.
Erica: No, she wasn’t. She mentioned a bedwetting alarm. She said he could take medicine, but that it will come back as soon as he stops it. So she wasn’t advocating drugs. But we gave her information about your enuresis program, and I have a friend who is a medical social worker who specializes in pediatrics. I was telling her about this and gave her the deep sleep bedwetting information about your program so she can tell her clients. This really needs to be disseminated to the people who are dealing with the care of children.
Barbara: You can certainly appreciate our uphill battle for 41 years. We’ve tried in every way to educate the professionals, particularly pediatricians. Of course we all go to our pediatrician first, but they just sort of dismiss it. They don’t really understand it. It doesn’t mean they aren’t good doctors, it just means they don’t understand bedwetting. So typically, they give the worst advice.
Erica: After I first encountered your program and the paper in Science that you originally cited, I then went to look to see who is doing research on enuresis and children. There is hardly anybody in the United States doing anything. In fact, there is a big group in the Netherlands doing stuff. They have some papers where they cited the original paper you cited as well. One issue might be just that this is not an area of research in this country, apparently.
Barbara: Again, because no one understands the real impact. They don’t understand the sleep disorder and how that effects the child physically, emotionally, and psychologically. Again, in every country we work with families—like Australia, France, Russia, Mexico—all doctors say the same thing. They give the worst advice: Don’t worry about the bedwetting problem..they’ll outgrow it. Then they say to restrict fluids, take them to the bathroom in the night, punitive measures; reward them.
And to reward for something or to scold for anything that is out of their control simply isn’t fair. Then they’ll offer to try an alarm. And then oh my goodness…we had a family in California with a 19 year old—you can appreciate— her son slept through two earthquakes. These children don’t hear bed wetting alarms. They don’t even hear smoke alarms, and that’s disconcerting.
Erica: My social worker friend knows mothers with young children. There will be three or four people whom she knows who have kids with bedwetting problems, and she has referred them to me, and then I refer them to you. The other thing that is really important for anybody who is considering the program is listening to what we’re talking about right now is that because we come from a scientific background, we tend to be quite skeptical. We don’t buy the ads. I was very skeptical when we saw the 97% success rate, like how can that possibly be.
Greg: And the money-back guarantee.
Erica: But here we are. We were worried that Jerry would have a lifelong problem. But as soon as we started going with your bedwetting program and seeing what it did and pulling out all the stops and making all the connections between the bladder and the brain—working with the sleep disturbance, working with the bladder capacity, working on the sphincter—all these things to try to take every angle on the problem, we were very, very impressed. It wasn’t a matter of belief, sounds cool”—it was working. Before you even get to the endpoint, you can see how it was working.
Barbara: Many people do have a lifelong problem with bedwetting.
Erica: Yes, I know you treat adults, too.
Barbara: Yes, and currently, our oldest patient is 44. And the older one gets, the more challenges they encounter, which can include social isolation and leading very solitary lives because they would rather be alone than have to share or speak about this to anyone. All around the world, bedwetting and its challenges has such a high impact on everyone. It is a shame that the professionals don’t understand.
Let’s speak a little bit about Jerry and how this has changed his life.
Greg: Fortunately, we never made a big deal about it. We were very careful not to be putative all along, so he’s never developed a real problem about it. But it was quite clear that he felt ashamed or guilty or whatever…pretty typical stuff. He clearly didn’t want his friends knowing about it. I used to have a bedwetting problem for awhile—and I still have issues with sleep—and I remember that feeling. But then all of a sudden, he would sleep over at someone’s house and not pee, and that was great when he completed your treatment and he was was able to stay dry and not have to worry about it.
Erica: What we used to do, he would do sleepovers, and then he even went to camp once before we were in your bedwetting program, and he would take a PullUp and would be discreet; put it away in a plastic bag. He was actually pretty well adjusted around it. He didn’t seem to feel stigmatized. But it was this thing that he always had to take care of. We were always crossing our fingers saying, he doesn’t leak”. He would be mortified if they found out. It’s just been so liberating for him—I can tell—not to have to think about it. Like being over at a friend’s house and to be asked last minute, have to worry about going home and getting stuff and having the bag—just that he doesn’t have to worry about it.
Barbara: Just not to have to think about it, even! It’s an “Do you want to sleep over” overnight that he can jump into.
Erica: It’s sooo nice. For me as a parent—he’s a really bright kid, he’s a well-liked kid, well-accomplished….I always used to think: Here’s this great kid, and there’s this one thing. It got to the point when I first called you guys that I was feeling like— we’ve got to help him. We’ve tried a number of other things trying to prevent bed wetting, but we thought we’ve got to get him out of this. And it worked.
Barbara: You all handled this enuresis problem very well, too. You understood that his worst fear would be that somebody will find out.
Some people don’t handle it as well as you did in that they scold and blame the child for being lazy, that sort of thing. That’s wonderful for him that you understood. And, of course, Greg, you understood having experienced bedwetting firsthand
Greg: Right. It’s it’s definitely changed not the least of which is that we don’t have to do the wash every day.
Erica: Oh yes, we have a drought here in California. So it suddenly occurred to me—I guess it was by the middle of the spring— i realized “I’m not doing wash every day, Greg!” That was great, too!
Barbara: I remember a story years ago, at the end of treatment, a child was complaining saying, Miss Barbara, my mom and dad only change my sheets once a week now. That’s no fair”. And then you realize that his whole life they had washed sheets every day. He thought that was normal. He hadn’t realized that he’s not in a hotel! (laughter). You realize that that was common for him. And then there was a child that I spoke to who said he had a dream for the first time. It was the first time that he had ever experienced a dream. It was phenomenal for him! He was describing “Oh, I saw this and that, and it was in color”. You realize something so simple like a dream never happens.
Erica: It used to make me feel — this is something I paid attention to with the treatment. I did notice him having dreams more.
I haven’t asked him lately as much. That always was weird to me that he didn’t because he has such a great memory. It suggested to me that he wasn’t having them. It always kind of broke my heart a little bit that he wasn’t experiencing dreaming.
Barbara: Because you know how important that is to brain health and how one functions during the day. Dream sleep is such an important part of getting quality sleep.
Erica: Yes, so I did notice a difference in that. It’s interesting. I haven’t asked about it lately, but I will now.
Barbara: Particularly with your backgrounds, you know how lack of dreaming and how it can cause frustration during the day, or anxiety or moodiness. Sometimes because of the poor quality sleep and lack of dreaming, they are misdiagnosed as having ADD and ADHD. Almost daily we talk with parents who are dealing with bedwetting and ADHD.
Erica: Fortunately, that was one of the things that he’s never had trouble with. This is also another reason that we would have never thought about a sleep problem with Jerry because he is pretty high energy, and compared to a lot of kids, he doesn’t seem to need a long night’s sleep. He never was drowsy during the day or not focusing or whatever. The main way it came out was with the bedwetting and the lack of dreaming.
Barbara: I’m so happy that we had the opportunity to help him. Those last two months at the end of treatment being totally dry must have been very refreshing for all of you. Erica/
Greg: Oh yes! How to stop wetting the bed was a topic of conversation routinely.
Barbara: Until you get all of the components — you can try little bits and pieces and get part of the puzzle—but unless you get all of the components, one is not going to be successful with ending bedwetting and changing the pattern of sleep.
Erica: I also think that being a part of the program has a motivational kick to it. Especially with Jerry who didn’t really want to wet the bed, but also seemed to be ok with it, on some superficial level at least. Having the structure—all these things that we were doing— kind of got him fully on board with the process. Don’t you agree, Greg?
Erica: Even though we tried other enuresis approaches, there was no getting away from this one, and I think that helped.
Barbara: With every failure experience, it makes it more and more difficult for a child. I’m glad we were able to help him while he was 10 years old instead of 18 years old and graduating from high school and can’t go away to college.
Greg: That would be a nightmare, yeah.
Barbara: People just sort of give up after awhile and resign themselves to thinking “I may be wetting the bed the rest of my life”.
Erica: Do you do followup with people, like a year later or anything like that?
Barbara: Yes, we have an automatic followup checking with families to make sure there are no difficulties. And we tell everyone— as I’m sure you were told—that if you ever have any situation in the future where you need our help, you only need to call. No matter if it’s five years or 10 years.
Erica: Lori did tell us that. She was wonderful.
Barbara: She’s a wonderful Treatment Advisor and very caring. Being a nurse, she has the medical background if we need some knowledge, although we’re not doing anything medical. But it’s nice to have all the professional background for the Treatment Advisors like we have to develop individualized bedwetting programs.
Well, thank you very, very much. Our very best to all of you. We appreciate the opportunity to help make a difference and change his life. And of course, it changes the family’s life.
Erica: It does, and we are very, very grateful to you folks, and to you for developing this program. I cannot image adolescent bedwetting.
Barbara: I’ve had my long struggle, also. But it’s nice to be able now to help others. Just as when you spoke with Gaile, she is kind of giving back what was given to her. Her heart and soul is in it, so that makes a difference.
Erica: I really enjoyed talking with her a lot.
Barbara: Good, I appreciate that. Everyone here tries to be as helpful as possible. That’s why we’re here six days a week. If someone needs help, they only need to call.
Erica: Just one last thing about Gaile. I was very impressed with her because I was very skeptical, so I was challenging her with understanding more about your bedwetting program with a bunch of different questions, and this and that, and she was just so non-defensive. It actually really spoke to her confidence in the program. She answered everything clearly. She understood my skepticism. She acknowledged legitimate questions. She offered guidance and pointed me in directions whenever possible. She said she’d get back to me on things, and I was very impressed by that. It played a big role in moving further with it, I think.
Barbara: I thank you very much. By the way, Erica. I was a very challenging mom, also. It think that’s what you have to be, because we are the only advocate for our children. We appreciate what it takes.
Erica: Yes. I’m really glad I pushed forward with this one, I’ll tell you.
Barbara: Thank you again, Greg and Erica! We are so happy for your family!
International Director and First Patient of ETC