Help!

[pinks895]

My 11 year old daughter has had problems with daytime wetting plus frequency and urgency since potty training. She usually goes to the loo 20+ times a day!

It took till the age of five to get any gp to take it seriously and get a referral. Since then my daughter was given oxybutinin and tolteradone which both caused a residual and reoccur-ant uti's amongst other side affects. She has been suffering with uti's off and on since. She then started a profelactic course of antibiotics which has stopped the infections so far.

She was recently referred to a different consultant who put her on solifenacene which has had no effect(now onto her 5th consultant). My daughter had been previously diagnosed with an over active bladder but the new consultant say she thinks it disfunctional voiding. Unfortunately we never seem to get any further forward with any of this! She is off to secondary school in September and I was hoping things would have improved by now for her sake! I know the professionals don't always have all the answers but really would just like somebody to try to help!

Has anybody else had these problems? Or any ideas???

[AliStan]

This sounds very familiar. My daughter is 8 but she has just been diagnosed properly with overactive bladder. I wonder when you say "consultant" do you mean hospital pediatrician and what tests have they done? Only reason for asking is that the "slightly hit and miss" approach you seem to be describing is what I had at the local hospital where we were seeing pediatricians but after pushing hard I got a further referral up to a specialist Bowel and Bladder Clinic for children at the Evelina Childrens hospital (attached to St Thomas's in London).

Our appointment there changed my confidence in diagnosis and treatment - on our first appointment, because of all the detailed tests they ran, we were there for almost 6 hours! It was a long day but it was the first day in what felt like a 3 year battle that I had absolutely confidence that the diagnosis was right. They explained what each test showed and why they then came up with diagnosis and what that meant. The team there literally only deal with bowel and bladder problems in children and I have to say were brilliant. I don't know where you live and if not near London, whether there are similar clinics near you that might be an option but for us it felt like a huge step to lose the "we think" or "maybe we can try this" from conversations with pediatricians. In terms of treatment, my daughter is on Tolteradone (so far with no side effects - although one they really wanted me to watch out for was constipation as she'd shown tendencies towards that) but also combined with using a TENS machine each night to try to get the muscles around her bladder to relax and help retrain them. We're about 6 weeks in, and it may just be wishful thinking as they warned us it would take time and could get worse before getting better, but I think it's getting slightly better. We still have accidents almost daily but it doesn't feel like she's going as often and we are having less accidents a day and smaller ones. Won't know anything definite until we go back in couple of months and redo all the tests to see if anything has changed but keeping fingers crossed we're moving in the right direction!

Sorry, just realised how much I've written but hope this may give you some food for thought. Happy to let you know more about the tests etc that they did at Evelina to see if your daughter has already had them or not.

[pinks895 in reply to AliStan]

Thanks so much for your reply! It has certainly given me some hope! We live down in Devon but I would willingly travel anywhere to get some more definite answers! It looks like the hospital you mentioned may see patients privately as well so that may be a real possibility.

In answer to your question my daughter has been seen by an adult urology consultant, 3 paediatricians and a pead urology surgeon visiting from Bristol (this being the worst! His advice was she may grow out of it or she might not! But he was a surgeon and there was no surgical fix for this!!!). She has also seen countless bladder and bowel nurses. I think unfortunately as her case is complex none of them really want to get involved and try to help! Hence we've seen so many!

So glad you are getting somewhere with your daughter! And hopefully at 8, will make a real difference to her future.you have certainly inspired me to keep pushing!!!

[pinks895 in reply to pinks895]

Sorry also forgot to say she has had both bladder and kidney scans, a flow test on the special toilet and an X-ray where they put a special dye into the veins beforehand ( not sure the official name)

[AliStan]

Before we went we had to do poo diary (for a week), wee diary (volume/accidents etc) for two separate days. Then on the day we saw Pediatric urology consultant first and she did initial scan at start of day, then we had to do 3 flow tests, measuring both volumes and flow, with scans immediately after each one (which the urology nurses did) and then back for final scan and consult with the consultant again where she had all the results together and so was really confident she knew what she was dealing with. She also explained it so clearly that even at 8 my daughter really got it. It was so good to see her walk out of there knowing it wasn't all her fault anymore which was so different from the "she'll just grow out of it" response!

Sounds like you've had most of the tests individually but possible difference for us is that they were done all in one day, with staff whose only job is this type of problem in children. If you're seriously considering Evelina, it is the Bowel and Bladder clinic that you'd want to see. Don't know if private option covers this or whether it's just a consultant appointment? Would be worth confirming as my personal view is that it was the complete day that really made a difference.

I wish you the best of luck, definitely worth keeping on pushing. If you ever want to know more, please feel free to ask. Since finding this site, it's been such a relief at times to find others in the same boat, even just being able to talk about it all.....helps keep us sane in a crazy world!!

[sophdon in reply to AliStan]

Alistan. Did you see dr Anne Wright? We saw her with my son 4 weeks ago and she has given us the same treatment plan as you. It's nice to hear you are seeing some improvement for the TENs machine. We have used it for three weeks now and no progress so far. Fingers crossed for some improvement soon. We are only to use it for 12 weeks so hoping for a change before then. Xx

[AliStan in reply to sophdon]

Yes it was same consultant. Are you just using TENS or medication too? She did warn us it could get worse before getting better so don't give up hope! That said someone else on here who I know was using TENS (although for slightly different condition) said results tended to be 1/3 cured, 1/3 improvement and 1/3 no difference so sadly it isn't magic cure.

I need to ring the nurses soon as got slightly inconsistent message, TENS for 3 months but next appointment likely to be c4-5 months. Not sure what I'm meant to do in the middle, if I just then stop or what we do? And that time coincides with our holiday too so don't know if we will need to take it with us? Want to ask them what we should be seeing? I don't know about you but felt like I got so much information on that day, there were questions I then didn't ask.

It's so difficult to judge progress but get sense that my daughter is leaving it longer between visits and she says she's not feeling quite the mad dash that she was before.....but then she's only just coming up to 8 and whatever I say, I know she sometimes tells me what she wants to be true rather than fact. She is definitely not having the leaks at school which she was before but still having accidents at home and at night. She's always left it longer at home thinking she's near a toilet and so that tends to be when we got and still get most accidents. In reality, I don't know if we will really know if any progress until we go back and repeat all the tests. Main one for us will be capacity as she never got more than 140ml!!

Be interested to keep in touch as sounds like we're on a very similar track. Fingers crossed for both the kids!

[sophdon in reply to AliStan]

Yes that all sounds very similar. We were told 12 weeks for the TENs. The thing we are unsure about is how high to turn it up. We've been given a prescription but advised not to give to him until the summer holidays coz might cause accidents. My ds also has a small bladder only holding 80mls. Xx

[AliStan in reply to sophdon]

With the TENS, we were told go as high as you can without it feeling too uncomfortable. She had to go to where it was uncomfortable and then just take it down one. Think she pushes it more on some days than others depending on how tired she's feeling. First couple of days we were only at around 10, now it's normally nearer 20! Did go over that a couple of times but then I noticed the battery sign flashing so not sure if it was a full strength, and it did seem to come back down a bit when I changed it. Also now starting to wonder if connections are as good as yesterday she said she couldn't feel one side, I had to take off and the put back on again and it seemed to fix it.

Interesting that you were told to hold off on the tablets, we went straight on to tablets as well so difficult to know which (if either) is making any difference.

[sophdon in reply to AliStan]

I think the reason we were told to hold off on the tablets was because he has very weak muscles so can't hold his poos so if it caused him to have loose stools then he would have accidents at school. I think we will have to use them when it's the school holidays because we haven't seen any improvement as yet. She said the same to us about the level for the TENs but his tolerance seems to change each day. Sometimes he has it on 30 and others he can't tolerate 8. I'm just hoping any level is doing something.

If you don't mind me asking, does your daughter get wet at school? And if so what you use? We have some absorbent boxer shorts but by the end of the day they are soaked through to his shorts and it smells too. I'm wondering if disposable pads would work better? I don't want anything to be obvious like pull ups etc. Xx

[sophdon in reply to sophdon]

I know what you mean about so much information at once. It's hard to take it all in when you are there and end up with so many other questions. I'm glad I've found this support group. I've been feeling so emotional about it all. He's nearly 7 now and getting really upset by it all. I really want it sorted before he starts in year two but think I just need to be patient. I'm just hoping there is a solution out there. Xx

[AliStan in reply to sophdon]

That makes sense in terms of the tablets, it will be a lot easier to deal with over the holidays.....but not much of a fun holiday though for you both! If anything we have the reverse problem, she tends to hold on and then do a monster poo! The worry was that side effect would be constipation so we've had to be on the watch out for that.

As to your question with school, no, luckily we've not had a major problem at school. With us, it didn't tend to be big accidents, more lots of dribble that built up and then it was the smell. I have kept her teacher aware of everything going on and they've been really supportive. She has a routine where she always goes every break, lunch etc which has helped. She's in year 3 (just - Aug 31st birthday!) so isn't meant to go in class time but she knows she just has to ask and she's allowed to go. She's always got spare clothes in case and their bags are outside the classroom so she can always get to it to change if needs be. Sounds like your son is about a year or so behind and for us that last year has been a time when she's really matured and it has been so much easier to deal with it as she's got more independent and will deal with it herself. The other thing that's helped her confidence is finally getting diagnosis so she (and everyone else) knows it's not just her being lazy, it is a real medical issue........

I really recognise the emotion you describe, it can be so frustrating and upsetting not to be able to wave a magic wand and make it all better for the kids. This forum has been a huge help and it's great to be able to share bad days (and hopefully the odd good one too!), knowing you're not alone! Hang in there, don't give up hope and try to keep positive. x

[Charlie5angel]

Oh bless you, I know exactly how you feel, my now 12 year old daughter had very similar problems, didn't start to present itself till she was about 8, we just assumed she had a UTI as she was peeing pretty much all day and it was stinging really badly, but after 4 visits to the doctors and urine tests kept coming back negative, we eventually got seen up hospital and she had a scan which then showed a duplex kidney with an associated uterecole attached, this all went on a couple of years going to and fro hospitals in London and local appointments, we are now under this great doctor who has always believed in her and has done every investigation possible to get to the bottom of it.

Just wondered if your daughter has ever been offered urodynamics or biofeedback training, it's always worth mentioning, if you look it up on Internet, it will explain what it's all about and whether her consultant can offer it to her. I really wish you well with all this as we know first hand how very stressful it is and what an impact it has on the family, I am just very grateful that my daughter got this great consultant and we are still now going through new investigations as he just wants her to have a normal life as possible, good luck xx

[Char1987]

Hi there , I have just read this post and could of wrote this post myself ... my daughters 9 and exactly the same , I now have to empty her bladder four time a a day with self intermittent catheterisation, I have been doing this since last august , and instead of going to the toilet 4-5 times a lesson she now only goes to the toilet 1-2 times a day during school , I do have to go into school every day to do this but it's helped a lot , she comes out of school damp but not soaked through/ smelling and sore like she used too , what hospital are you under ?