Any experience with secondary incontinence? UPDATE page 3

[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!

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

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

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

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

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 ) 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!