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 :grouphug:

[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. :confused3

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. :confused3

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! :sunny:

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 :rolleyes:

[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!

[BeccaGrace]

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! :sunny:

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 :rolleyes:

Yep, I figured out what you were saying:)

No, she doesn't have a yeast infection. That was what they checked for first because of the itching but everything is clear and she never had any of the other yeast infection symptoms (discharge, etc.). They also stopped her UTI antibiotics early because they thought she might be getting one secondary to the UTI but she didn't have one then either. Thanks for asking though!

Belle & Beast--I am so sorry they were so horrible during her VCUG; it's a bad enough test without them stressing her out like that. I'm not looking forward to ours but at least they were really nice when my youngest had hers. I don't know if this one will be more stressful or not because my youngest had hers when she was 2 and Grace is 5 1/2.

And to add some levity to the subject...when we were at the pediatric urologist he just came in and did a brief exam and talked to us...so he's leaving and Grace goes, "Excuse me, that's it? I thought you were going to fix my v****a but it still hurts!" Can't wait to hear what she's going to say during the VCUG :rolleyes:

I hope everything goes well with your dd's ultrasound and visit on Monday!

[minkydog]

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.

I'm glad your' going to the children's hospital this time. It really makes a world of difference, a completely different mindset.The renal ultrasound shouldn't be painful at all. Just like getting an ultrasound during pregnancy without the full bladder :thumbsup2

It's not uncommon for the visit to be scheduled with the nurse practitioner. An NP, at the lowest level, is a master's-prepared nurse--that's 5 or more years education. In a specialty office they often have even more training in that field. NPs can't do surgery, but they are very good at evaluating problems. (We have NPs for my son's seizures--when things got out of hand, you bet they called in the neurologist,pronto!)

~My son had chest reconstruction at Miami children's hospital when he was 5yo. the care he received, their whole attitude, was so far superior to anything we had experienced before. In fact, when I changed jobs shortly afterward, I went to a children's hospital myself. I've been with them 12 yrs now and I'll never go back to working in an adult setting.

[belle&beast]

I'm glad your' going to the children's hospital this time. It really makes a world of difference, a completely different mindset.The renal ultrasound shouldn't be painful at all. Just like getting an ultrasound during pregnancy without the full bladder :thumbsup2

It's not uncommon for the visit to be scheduled with the nurse practitioner. An NP, at the lowest level, is a master's-prepared nurse--that's 5 or more years education. In a specialty office they often have even more training in that field. NPs can't do surgery, but they are very good at evaluating problems. (We have NPs for my son's seizures--when things got out of hand, you bet they called in the neurologist,pronto!)

~My son had chest reconstruction at Miami children's hospital when he was 5yo. the care he received, their whole attitude, was so far superior to anything we had experienced before. In fact, when I changed jobs shortly afterward, I went to a children's hospital myself. I've been with them 12 yrs now and I'll never go back to working in an adult setting.
Thanks for the encouragement. I just have never been in this situation before and was expecting to see a doctor. I am kind of kicking myself now for not getting into the pediatric hospital sooner, but live and learn. Plus I now have a great pediatrician who believes what I tell her and takes me seriously, which is another issue entirely.

[belle&beast]

Well, we went to the pediatric nurse practitioner in urology and we have a diagnosis and a plan! Basically DD no longer is able to feel when she needs to go to the bathroom because she had desensitized herself by holding it for so long (while doing the "potty dance"). She also thinks that she has trained her muscles to constantly be tight so she never completely empties her bladder and when she gets off the potty, she goes in her pants. We are on a strict 2 hour schedule and she needs to use a stool to get her feet flat and open her knees and lean forward to help relax the muscles. We also are on a high fiber diet and have eliminated citrus, caffeine, and red dye from her diet. We just started all this on Tuesday and she only had one accident on Tuesday and one yesterday and has been dry all day today!

The NP checked her for the dimple that could be spina bifida occulta and she did find something that could possibly be a small dimple. At this time though she said that we should try the plan and go from there.

We go back in October unless we are not having success, then she wants to see us right away. It is the first time in a 2 year struggle that anyone has taken us seriously and we finally have a program to help! Why didn't I just ask to go there in the first place!!!! Now I know I will always try to get to a pediatric specialist if we need to go to a specialist.

[Michigan]

I would still insist on a MRI of her spine given the history before she was born. Occulta doesn't always have a dimple that can be seen or felt on the outside. Did she only feel the lower part of her back? The entire spine from the top of the neck to the tailbone needs to be checked and only a MRI is going to do that.

Cindy

[Nanajo1]

Good luck with the plan. At least you know someone is listening.

[belle&beast]

I would still insist on a MRI of her spine given the history before she was born. Occulta doesn't always have a dimple that can be seen or felt on the outside. Did she only feel the lower part of her back? The entire spine from the top of the neck to the tailbone needs to be checked and only a MRI is going to do that.

Cindy
She did find a spot at the very base of the tailbone (for lack of a better term, it was inside her butt crack) that would be where to start if the program does not work. DD has typical coordination and muscle tone in her legs. When the NP checked her feet and legs she felt that it was not something to worry about at this point. From what she described, they definitely try to retrain before checking into surgical options. If we do need to look further, that will be the place to start. I am curious, but it sounds like this would be the program regardless of diagnosis for the time being.

[BeccaGrace]

I'm so glad your appointment went well and the plan is working well! It sounds like she is already improving--that is such great news!

We had our ultrasound and vcug yesterday and she is refluxing but only at a level one (her sister is a level three). They best part of the test was we were able to see exactly what is going on and the doctor reading the test said it look like she has overactive bladder with an increased sense of urgency that makes her feel like she has to go but when she tries and that initial need is relieved she stops going and doesn't empty her bladder and then has to go again two minutes later. So in her case she has the brief accident and wets herself a little and then goes when she gets to the bathroom for real.

I was happy because they were able to see everything I was talking about--i.e. drinking non-stop but not going (she had 30 oz. of water and didn't use the bathroom for over 2 1/2 hours before the test but her bladder wasn't full for the ultrasound); going to the bathroom and then going less than 5 minutes later; wiggling and crying that she had to go and then being unable to go; going but only emptying about a quarter of her bladder; needing to "push" to empty the rest.

So we see her urologist next wednesday to discuss how to help her out; I'm thinking it may be a similar plan of attack that your daughter is doing.

I'm so happy we've both gotten some answers!!!

[BeccaGrace]

Belle & Beast--Is your daughter in Kindergarten? Did you or are you planning on talking to the teacher/school about what is going on? I was going to ask her urologist for a letter just explaning the issue to explain that she may need to use the bathroom frequently (I don't want them to think she's faking about needing to go 3 times in 20 minutes) and also put more than one change of panties in her spare outfit bag. We start on 9/6 and I'm wondering if I should call the school after our doctor visit next week to make sure they are aware of what is going on. I'm thinking this could just be an informal thing rather than requiring any formal involvement with the Office of Special Services since it doesn't involve a specialized learning plan; does that sound right? Just wondering what other people have done:) Thanks!

[belle&beast]

Belle & Beast--Is your daughter in Kindergarten? Did you or are you planning on talking to the teacher/school about what is going on? I was going to ask her urologist for a letter just explaning the issue to explain that she may need to use the bathroom frequently (I don't want them to think she's faking about needing to go 3 times in 20 minutes) and also put more than one change of panties in her spare outfit bag. We start on 9/6 and I'm wondering if I should call the school after our doctor visit next week to make sure they are aware of what is going on. I'm thinking this could just be an informal thing rather than requiring any formal involvement with the Office of Special Services since it doesn't involve a specialized learning plan; does that sound right? Just wondering what other people have done:) Thanks!
My daughter turned 5 at the end of July and the cut-off for kindergarten at her school is August 1. We decided to wait and do one more year of preschool so she will not be the very youngest in the class. I am really glad with all this potty stuff and some other maturity issues- it was the right move for her. The NP offered us a letter to explain everything to her school, so she had it ready to go, but we decided just to talk directly to her teacher since we know her already and she has been working with us on these issues is the past.

I am a speech pathologist in the public school preschool and it might be worth it to contact the principal and teacher to see what is required. Some teachers are really strict and will only make changes in their classroom rules if it is required by law. (Not all- some :goodvibes ) But it would be good to have something in place before school starts to hopefully avaoid any possible accidents and embarrassments. Good luck!

[belle&beast]

Well, DD is at preschool for her first day and I am really hoping that she doesn't have an accident!!! She has only had 2 in the past week and is not soaking through at night and even has had totally dry days! Keep your fingers crossed for a good day at school!

[belle&beast]

I am bringing this thread back, and the mods may want to move it to the DISabilities community board...

I started another thread about urodynamic studies, but remembered there were some interesting insights on this thread. I am a speech pathologist in the public school system and I talked to a physical therapist today who is certain that my DD's symptoms are screaming spina bifida occulta. She said one thing she always looks for in spina bifida is regression of skills, and we are seeing this with our DD.

The NP did see a dimple. Is surgery the only option?

[belle&beast]

Well, we have a lumbar/sacral MRI scheduled for Tuesday and I am anxious to have some answers. We also have appointments wiht GI specialists and our urologist the following week. Hopefully we can have a plan and she can be dry when she goes to kindergarten!