Any experience with secondary incontinence? UPDATE page 3

[belle&beast]

DD just turned 5 and is wetting her pants all the time. She was completely potty trained (including night time) at 28 months and began having accidents at around age 3. DS was born when she was 2.5, so I just figured it was an attention seeking behavior as he was getting more attention for crawling, and being more interactive. A year later she was still having accidents and now wetting the bed. I took her to a urologist who put her on detrol after a kidney ultrasound and VCUG came back normal. I have since switched pediatricians and we have been referred to a children's hospital to see a pediatric urologist. She is petrified after the very invasive VCUG and I admit I am dreading it, too. Anybody know what comes next? Or have any input- anything will be greatly appreciated!

 

[Schmeck]

When you say "all the time", do you actually mean she has no control, and just never ever uses a toilet, or that she has frequent accidents, but does use the toilet?

My oldest was trained at 2 yrs, but started bedwetting when I was rushed to the hospital 3 months later. In kindergarten she had many accidents, and it continued into the beginning of 1st grade. By second grade she wasn't having daytime accidents, but still wet the bed weekly.

She didn't completely stop the bedwetting until she was 9 yrs old. We never found a cause (everything checked out negative/normal), and we just dealt with the accidents as discreetly as possible. It helped that she knew two of her best friends had bedwetting accidents too!

 

[steffali]

My DD was potty trained by 18 months old. She started losing bladder control at the age of 19 years old. I took her to her neurologist ( she has seizures and hydrocephalus ) and urologist as well. They put her on Ditropan XL(Detrol did not work for her) but she still has an accident 1-2 per week. All of the tests are coming back fine and there is no explanation. SO I can sympathize with you. Good Luck

 

[belle&beast]

She uses the toilet frequently and still has 3-4 accidents daily. As an example, we had a play date with a preschool friend on Wednesday and as soon as we arrived, she went to the bathroom. Within 35 minutes, her shorts were soaked through. We cleaned up and she went to the bathroom again, a lot- this time I was with her. On the way home we had to stop at McDonald's so she could go to the bathroom and her panties were wet. Then later in the evening she was riding her bike with DH and she wet herself through again. This seems to be our typical day. Yesterday she asked if she could wear pull-ups in case of an accident when we went to have her 5 year photos take. So she wore a pull-up and still wet through at naptime. I am pretty sure it was wet before nap, although she claims to have been dry. I try not to make a big deal of it in case she is seeking attention, but I am so tired of the urine smell and finding wet clothes in the hamper- she will often change her panties if they are wet and her clothes are dry. I really am not worried about the bed-wetting. At her age the doctor said 15-20% of kids are wetting the bed. The reason I brought it up is because the doctor was concerned that she had been dry at night and now is wetting.

 

[Mickey'snewestfan]

DS7 has struggled with constipation all his life. When he was younger I was very much on top of it, but it's harder now to get accurate information about whether he went (was that today at camp or yesterday at camp?) and what consistency it was.

Anyway, what I notice with him is that when he's constipated it makes it MUCH harder for him to control his bladder. If he's not constipated he's 100% toilet trained, has been for years. But if he's constipated the stuff in his intestines will put pressure on his bladder. He generally still makes it to the toilet and home and school where the toilet's always close and available, but at some place like WDW where he might not get to the toilet right away things can be rough. In fact, we've gotten to the point where if I notice him speeding to the bathroom, I just assume he's constipated and medicate him for it -- luckily he responds really well to Milk of Magnesia which is OTC and, for him at least, pretty side effect free.

 

[belle&beast]

DS7 has struggled with constipation all his life. When he was younger I was very much on top of it, but it's harder now to get accurate information about whether he went (was that today at camp or yesterday at camp?) and what consistency it was.

Anyway, what I notice with him is that when he's constipated it makes it MUCH harder for him to control his bladder. If he's not constipated he's 100% toilet trained, has been for years. But if he's constipated the stuff in his intestines will put pressure on his bladder. He generally still makes it to the toilet and home and school where the toilet's always close and available, but at some place like WDW where he might not get to the toilet right away things can be rough. In fact, we've gotten to the point where if I notice him speeding to the bathroom, I just assume he's constipated and medicate him for it -- luckily he responds really well to Milk of Magnesia which is OTC and, for him at least, pretty side effect free.

I did forget to mention that, too. DD takes Glycolax daily to keep stools soft, so we have gone that route as well. It seemed to help for awhile- a few weeks, but now the accidents are frquent again.

 

[allie&mattsmom]

My DD11 has had chronic constipation since she was an infant. She is now on Miralax daily. She was potty trained at about age 3. She never had a bed wetting problem but had a lot of trouble with not making it to the restroom in time to empty her bladder. Lots of accidents. Even at age 11, she once in a great while will have a problem where if she is far from a restroom she doesn't always make it on time. She gets such a sudden urge to go and has to make a mad dash to the restroom. I don't know if it truly comes on that suddenly or if she just ignores it and waits to the last minute.

Regarding the comment one of the above poster said about being constipated and it puts pressure on the bladder, I never thought about that. We see a ped. gastro. doctor regularly and they have never once mentioned that when I've talked about her accidents. But boy does that really make sense.

 

[Nanajo1]

Has your DD been checked for diabetes?

 

[belle&beast]

Has your DD been checked for diabetes?

No, she hasn't and it has never come up. That is a good point. She has been checked multiple times over the years for UTIs and they have always been negative. Gosh, I never thought of diabetes, where do I go from here?

 

[Michigan]

Has she been checked for spina bifida occulta? Many people have the occulta form of SB and never find out they have it. It is usually discovered because of bowel and bladder issues.

Cindy

 

[belle&beast]

Has she been checked for spina bifida occulta? Many people have the occulta form of SB and never find out they have it. It is usually discovered because of bowel and bladder issues.

Cindy

The pediatrician checked her spine last visit, and told me she was looking for a dimple or any signs of spine abnormalities, but that was it. We are going to a pediatric urologist next week and I will have lots of questions for him. One thing is that during routine ultrasound when I was pregnant with her, she had an enlarged ventricle in the brain and we had to go back for follow up and everything was normal at that time. From what I understood, the ventricle is where CSF is made and it seems that hydrocephalus and spina bifida go hand in hand. Maybe there is something to this...

 

[eternaldisneyfan]

How about Chiari malformation? My friend's son had problems wetting or knowing he had to go. Does your daughter stumble, trip, or walk into things? Is she "clumsy"? Does she complain of headaches or trouble seeing? Chiari can also show an abnormal MRI but can only be diagnosed with a special scan...Good luck.


Christamae

 

[BeccaGrace]

My dd-5 has been having similar issues, along with itching and burning. She did have a UTI that has since cleared but for the past month has been urinating frequently and having accidents.

I had the same concerns re: diabetes and was told by our pediatrician that when they did they urine screens for UTI they also check for sugar and protein in the urine. So if those have been clear and your pediatrician has similar testing procedures then it is likely not diabetes.

You guys are ahead of us in the testing...our ultrasound and VCUG are next friday. Her pediatric urologist started her on Microdantin in advance of the tests because her little sister has reflux and it increases the chances that she does too. So honestly, I'm just going by that right now and didn't think to ask during her appointment what would come next if she's not refluxing.

So even though I don't have much in the way of advice I wanted to let you know that I understand your frustration and can sympathize. Right now we've focused more on the other symptoms Grace has (itching, pain) rather than the wetting since they are making her the most uncomfortable. Is it possible she's in pain but hasn't told you? The urologist said that sometimes kids won't tell you and the wetting is because they are trying not to pee because it hurts.

It's been very frustrating since we are doing everything her ped and urologist have suggested and nothing is helping. Add the wetting in too and it makes you feel really helpless. We basically don't draw attention to it when it happens and try to prevent it by taking her to sit on the potty every 1 1/2-2 hours, letting her wear a pull up if she feels more comfortable in one, soaking in a tub with baking soda every four hours and letting her go in there if it makes her feel better (thankfully she thinks that is way too gross and told the doctor so! But she will get right out of the tub to go, so I think that it does help a little.)

I'll let you know if I think of anything else--Good luck and please let us know what the doctor says, I'd be very interested in knowing for our own reasons!

 

[minkydog]

Has your doctor tested her for diabetes insipidus? It's not the same as diabetes mellitis(regular diabetes.) It doesn't usually make a child sick, but they drink a lot and they urinate a whole lot.

here's a link:http://www.healthatoz.com/healthatoz/Atoz/ency/diabetes_insipidus.jsp

 

[belle&beast]

Thanks to everyone for their input. I now have a longer list for the urologist on Monday. This time we are going to a pediatric urologist, so hopefully we will have some answers more quickly.

BeccaGrace, thanks for your story- I feel like I am the only one with these issues and nobody else seems to understand the frustration and stress that goes along with it. None of my friends have had any trouble like this with their kids and my mom thinks I am too worried about it. We do try to give it very little attention, just clean up and change- no punishment or attention given. At this time the ony time she has any pain is if she has a rash from being wet or wearing pull-ups. It seems to be more of a skin irritation than anything else. I am really dreading another VCUG, and I am not sure whether or not they will do one. The last time she had it done was Oct. 2004, so I'm sure it is too old. Hopefully going to a children's hospital will make a difference- the staff at our local hospital was not very understanding or kind to her.

I will keep you all posted- thanks to all for your encouragement and ideas!

 

[SaratogaShan]

BeccaGrace,

Has your pediatrician checked for a ******l yeast infection? Little kids DO get these from time to time and will definately cause itching. Sometimes they can cause wetting too because children have a hard time differentiating between ******l and bladder sensations. Just a thought. Best of luck to both you and the OP!

Wow...OK I did not know that word would be edited out! I'm sure you can figure out that I was talking about a female reproductive part

 

[belle&beast]

I just got off the phone with the urology department and on Monday my DD is scheduled to have a renal ultrasound and then meet with a nurse practicioner. I was a little taken aback, I thought I would see a doctor. But the receptionist said the doctors only see patients when they are surgical and the NP manages the incontinence issues. Is this common? This is our first experience with the children's hospital.

 

[Michigan]

I have 2 daughters with the myleo form of spina bifida and we only see the doctor. (We go to the University of Michigan) The nurse does the VCUG in a room with a video player so the kids can watch a video while the procedure is going on.

 

[belle&beast]

I have 2 daughters with the myleo form of spina bifida and we only see the doctor. (We go to the University of Michigan) The nurse does the VCUG in a room with a video player so the kids can watch a video while the procedure is going on.

The VCUG we had was a nightmare! The nurse was losing patience with my DD (then 3) and was practically yelling at her to "Relax!" Yeah, that's how you work with kids...Anyway, I have a feeling this is just the first of many visits because they really aren't doing much- just the ultrasound and then the consultation which will determine the next step. I was just surprised that we weren't going to see a doctor unless she needs surgery.

 

[BeccaGrace]

Oops, double post!