Why are two of my older children wetting the bed?

One of our directors, Leslie Miller, sat down with the mother of two children who completed treatment with us.  While she is happy her children are free from the burden of bedwetting, she remains frustrated that bedwetting is still misunderstood by doctors, and that there is so much misinformation on the internet that leads parents astray.  She is speaking out because she wants this to change, and we couldn’t agree more! (We are referring to this woman as “Mom” for purposes of this article).

Mom – When I told my pediatrician that my second child was wetting the bed–my daughter–it was the same response as when I sought advice for my son who wet the bed. I already knew I was going to enter her in your bedwetting treatment because it worked for my son, but I was just curious to see what he would say. He basically said not to worry, she would outgrow it. He never asked about how my son was doing with his bedwetting.

Parents need them to know about your clinic because you only work with bedwetting. And since the bedwetting is not the real issue, this can be very confusing. When I was so frustrated with the lack of direction from the pediatrician for my son, I decided to research the heck out of bedwetting! Your website came right up for me, and I read everything. The sleep part and the other symptoms, it described my son – and now my daughter. Pediatricians don’t know about you. They need to know about you.

Leslie – Some know about us, yet there are roughly 85,000 pediatricians in the United States, and we haven’t been able to reach them all….to educate them.  We have found over the past 44 years that pediatricians tell you not to worry and wait until your child outgrows bed wetting. This is the first and foremost suggestion.  The next step for a pediatrician is to rule out a physical cause, which leads to a referral to a urologist. Less than 1% of bedwetting is caused by a physical problem. There is nothing physical or psychological in origin about bedwetting.  Even if someone fell into the 1%, there wouldn’t be anything a urologist could recommend to remedy the problem. Fortunately, there are specialists who are in the know, and we have received referrals from physicians, psychiatrists, psychologists, and social workers.

Mom – They don’t know about you here in Texas. They should know. They should know it is a sleep problem. They think there is something wrong internally with the person. Like my son was six – bedwetting. Seven – bedwetting.  And then by age eight, the doctor said we will try something to stop the wet bed. I mean he’s 8 now. Living 8 years with bedwetting. And now he said we will give him pills and try to stop bedwetting. Then I researched the hell out of the pills, and you know what, they dry up the urine and dehydrate the body,  and have a ton of side effects.

Leslie – Was the medication called DDAVP? It actually slows down kidney function and may limit urine production temporarily.  It does not cure bedwetting. Thousands of parents have called us and reported trying DDAVP*.

If it worked for someone at all, they have seen the bedwetting return when they stop dosing. Or it doesn’t work to begin with even at the highest dosage.  The worst thing we hear is that a doctor assured someone their child can attend a sleepover and not worry about them wetting their sleeping bag because the drug will prevent it…and then the child actually does wet.  It’s disheartening, unfortunate, and unnecessary. The pediatrician is not looking at the root cause, they are looking at treating the symptom of bedwetting, and we all know that’s not an effective means to permanently change anything.

Mom – Exactly. They are really not a bedwetting specialists, are they. They are not paying attention to the impact the bedwetting is having on someone. It was having an impact on my boy. His sleep was terrible. He was difficult to get up in the morning–cranky and tired. That tiredness carried through his school day.  He was always worn out from using up his energy during school. Then he had a great deal of homework. We had to constantly keep him on track to finish his homework. And then this poor kid wakes up wet, does not know why, feels terrible, and we couldn’t bring much comfort to him. It was exhausting for the entire family. I know he was embarrassed and frustrated. He was refusing offers for sleepovers. I asked him what worried him the most and he said that he would be bullied for life. His friends would turn against him, and he would be alone. It broke my heart.

Honestly, I find it hard to recommend you to people. No one talks about it openly. When you gather around with friends, you don’t bring up “oh yeah, my ten-year-old still wets the bed”.  I mean really, nobody talks about it because it’s embarrassing. I want to talk about you and the success my son had because I know there are people who need your help. Out of all of this, I think the most important thing people need to know is how crappy the sleep is. It’s hard for them to put two and two together based on the misinformation you come across online.  For my son now, the fact that he is getting ridiculously good sleep impacted his life right away…in every way. Once you understand, bedwetting is really the secondary issue. I just don’t know how to phrase it in a way that will help others without embarrassing my son and my daughter.

Leslie – What do you think is the real concern here?

Mom – It’s like taboo. Nowadays people who are gay are coming out, but bedwetting is such a shame…still that it has to stay a secret. It is a stigma and sad. I was not about to have my son wet year after year and suddenly he is a teenager and wetting the bed.  I read about how teen bedwetting is on the rise because parents wait and wait. They aren’t to be blamed. They’ve just been brainwashed that that’s what there is to do. To wait. I found also that some people believe that the person who wets the bed has a problem…like they are doing it on purpose. I have heard people say bedwetters are babies, refuse to grow up, or have mental problems. Can you believe in 2018 that anyone would think that?  It’s truly unbelievable that few people know it’s a sleep problem – truly a sleep problem. Crappy sleep. How can someone do their best if they are not getting good sleep night after night on top of feeling terrible and tired, and for my daughter, feeling sad and as though something is really wrong with her, especially wearing pull-ups at age six. If everyone would just go to your website, it would become crystal clear.

Parents need to Google for an expert. You will show up and tell them everything. Everyone thinks you go straight to the pediatrician for this problem. Western society is like that.  They don’t give you a clear-cut plan or pay attention to everything that is going on with the sleep. They really don’t know, and they won’t admit they don’t know. I guess they also don’t have time.  You need to train the pediatrician about the cause, not just the symptom of a wet bed. I think underneath it all, they are interested in treating the source for their patients, but if they can’t get to it, they go with helping someone live with the symptoms of their illness or challenge, and that is truly unfortunate.  I think you need to go right to the medical schools and tell them what you know.

Leslie – What an insightful idea. Thank you so much.  And thank you for your time today. We appreciate you, and it’s been a delight to work with you and your children.

* https://www.kidney.org/patients/bw/BWmeds

* Desmopressin Acetate (DDAVP)

  • DDAVP is a drug to treat children with bed-wetting. Although DDAVP does not cure the condition, it does help treat the symptoms while the child is on the drug. Numerous studies report reduction in the number of wet nights.
  • DDAVP is a man-made copy of a normal body chemical that controls urine production. The therapeutic benefit of DDAVP might be due to a reduction in the overnight production of urine or possibly to an effect on arousal.
  • Many studies have attempted to identify those childrens most likely to respond to DDAVP. Older children are more responsive. Children with a normal bladder capacity are more likely to respond than those with a small bladder size.
  • The drug can be taken as a nasal spray or tablet. However, the tablet has several advantages. If your child has no problems swallowing pills, the tablet is more discreet for sleepovers and other special occasions. Additionally, the tablet has reported a better response rate. The nasal spray can be affected by a stuffy nose from colds or allergy. DDAVP should be given at bedtime. Because it works right away, it does not need to be given everyday to be effective.
  • DDAVP has few side effects. The most common side effects with the nasal spray are nasal discomfort, nosebleeds, tummy pain, and headache. The only serious side effect noted in children treated with DDAVP is seizure due to water intoxication. This serious problem is preventable with care not to overdo fluids on any evening that DDAVP is taken. Children should take only one eight once cup of fluid at supper, no more than 8 ounces between supper and bedtime, and nothing to drink in the two hours before bedtime. Early symptoms of water intoxication include headache, nausea, and vomiting. If these symptoms occur, the medication should be stopped and the child should be seen by a doctor immediately. Caution should be used in children with attention deficit hyperactivity disorder since they are often impulsive. These children might require especially close monitoring of their fluid intake.
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