Pediatric Urology

[LindaP]

I was reading some posts and I do think indeed there are kids like her out there! But she's the only one at our Children's Hospital. I was hoping to gain some insight as to what could be done or is in her future. Here goes the short version of her history:

When she was 8 months she got a UTI the thought it was reflux so they scheduled a VCUG immediately. In that they found she didn't have reflux but she does have a bladder that is way too big for her body (she's 2 and it's the size of an adults) and she doesn't empty it fully. She's had DMSA kidney scans (no scarring), she's had xrays to look for spinal bifida (negative) and recently she just had an MRI to see if she had a tethered cord. Again negative. However, now they are watching her to see if she is one of the rare kids that could have a tethered cord *with* a normal MRI. We saw a Neurosurgeon and her MRI was normal, but then she started doing wierd things walking so she wanted another opinion, so she sent us to a neurologist. Perfectly normal neurolgist visit. (By that time the walking thing had cleared up) However, he said he' like to keep seeing her every 4 months to keep an eye on her b/c he might be able to detect changes we don't see.

We also may need to do some urodynamic studies when she gets older. However, her urologist said she can already tell from her ultrasounds that she has a "high capacity, high ____ bladder" (Crud, I can't remember the other word!) so she doesn't see the point in putting her through painful humiliating tests at this age.

So I guess my question is where do we go from here? Right now my daughter is on activity restriction somewhat b/c of a fear that she may burst her bladder if she fell (for instance off a bike or another big kid fell on her). They say if she gets another infection or she begins to get hydrophenisis we may have to start cathing. They also say if she gets hydrophenisis and her kidneys start to get infected that they may indeed try the tethered cord surgery to see if it works.

Soooo...does anyone have a child like this? In limbo? With the big, malfunctioning bladder but with everything else normal??? I don't know what to do. We're working with Children's in DC and have gotten 2nd opinions from Johns Hopkins and Chicago and they all agreed to check on the tethered cord. (We have not gotten more 2nd opinions since after the normal MRI however they were all in agreement with Children's DC before). The neurlogist said he's SURE at this point we could find a surgeon who would operate her on her for the TC, but he would never put his kids through it if they were doing as well as her right now. So I trust that (I think!). When she potty trains hopefully we'll get some answers as to if she fully empties or not, and if she's having accidents etc. She's partially potty trained now. To be honest I *don't* think she's emptying fully b/c she'll go on the toilet and then fill a diaper 10 minutes later. But who knows that could be weird toddler behavior!

Anyone have a child like her?

Linda

[LindaP]

I forgot to add that she also has chronic constipation. She takes and adult dosage of Miralax each day and is still totally backed up when they do an ultrasound, MRI, etc....we try to keep her empty b/c that lets her bladder empty better.

[kcrosby]

I have a daughter with the urniary reflux however; my neice had the reflux and the oversized bladder. they made and opening in the wall of her bladded and in her abdomen and stiched them together so that she would have an constent opening for the bladded to be able to empty. we never had to cath her much after that. but they couldnt tell us what caused it. Does anyone know what causes the oversized bladder?

[LindaP]

Thanks you! So with that can she pee normally? Or does it make her empty her bladder elsewhere? We just had another round of ultrasounds and found out it's getting worse. Now she's getting hydronephrosis in one of her kidneys from it. The Dr. said we have to potty train her ASAP, although she's pretty sure she can't sense that it's full and/or when it's not empty, so we're going to have to go further into the neurological aspect of things.

From what her Dr.'s have said, the most likely cause is neurological. They really suspect a tethered cord but her MRI is normal. I think they want to redo it b/c they say it HAS to be caused by something, an oversided bladder is not an isolated thing. They seem to say it's neurological and a tethered cord is the most likely culprit.

Linda

[cshielrun]

Hi Linda,

You should check out yahoo group for tethered cord issues "LMC-TCS". The overwheming majority of parents feel they should have done the TC surgery sooner and maybe avoided lifetime incontinence due to nerve damage. About the tests, a little trauma now is better than a lifetime of incontinence.

Christine

[Zachsdad]

You just discribed my 4 year old to a tee. We resently went through the bowel management program and Cincinatti childrens hospital. My son is presently being treated with laxitives and cathiter (4 times a day). We went through the Mirlax for about a year. We were told that Mirlax is a stool softener and wasn't completly emptying the colon. We we switched to Exlax now and they also have recommended possible enimas daily if that doesn't work. As for the cathiters that, even though somewhat time consuming, seems to be helping. He's able to play and everthing fairly normal, it just takes some planning of your day. You may check with the Cincinatti program it's very nice.