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How do I find a Paediatric Urologist?

54 replies

AtheneNoctua · 01/10/2009 09:29

DD (6) has recurring UTIs. It has been going on for about a year. Have been to GP, referred to paeditricain, discharged back to GP and now on long term antibiotic (nitrofurantoin). But, she wets herself all the time and I'm thinking a general paeditrician is perhaps not most appropriate specialist. So I want to go back to the GP and ask for a referral to a paediatric urologist. I have looked on drfoster.co.uk and didn't come up with much.

I want this doctor to be female, which is probably limiting my choices a bit. But, DD will not want to drop her pants for a man (understandably). And I want this doctor to specialise in paeditric urology not just urology -- prefer a specialty in UTIs.

Am I asking too much? (I don't really care if I am to be honest. This has gone on for a year and it's time DD get's some results)

OP posts:
Are your children’s vaccines up to date?
AtheneNoctua · 02/10/2009 17:42

It sounds like you are about 8 months behind us. DD started getting this UTI Nov. 2008. And I think at your stage a six month AB is probably all I would want to do. But now that it has gone on for a year and the poor thing stinks of urine every day at school I think it is time to consider the next step (whatever that is).

OP posts:
positiveattitudeonly · 02/10/2009 17:46

I have not had time to read all this thread, but there is an excellent urolgy team in Southampton, cant find any reference to where you live, but haven't looked for too long, teas cooking!! Sorry!

positiveattitudeonly · 02/10/2009 17:47

Sorry, typing too fast for my fingers, obviously, urology!!!

AtheneNoctua · 02/10/2009 18:03

We are in West London (well, just west of West London really)

OP posts:
ilovemydogandmrobama · 02/10/2009 18:07

nephrologists are more experienced in kidney diseases, and urologists tend to have more experience in surgery.

Ask about hydronephrosis. It's what I had when I was a child and had constant UTIs.

MarthaFarquhar · 02/10/2009 18:08

Sorry to disappoint - it turned out DD just had scans and tests today, and will see the consultant in a month's time to review the results and history. DD is attending this clinic.

wingandprayer · 02/10/2009 18:49

Athene - your poor daughter, that's just miserable isn't it? I hope you can get a referral and get this sorted. Ironically we saw a paed urologist with DS for an entirely unrelated reason at Alderhey. I am north west and an hour from the clinic Martha mentioned so have made a note of that too.

I remembered a directory I found when researching DS problem and it's a list of paed urologists and surgeons speciliasing in his problem but thought it worth a try. Apparently there are female paed urologists near you (ish) at St Georges Tooting - Su Anna Boddy, and John Radcliffe Hospital in Oxford - Rowena Hitchcock. Rest of list is www.bapras.org.Uk

PrettyCandles · 03/10/2009 16:59

My dd's probelms were no UTIs - she had the symptoms except for fever, but tests were never conclusive, and the pains cleared up by themselves. What the paed sorted out for her was the daytime wetting, using a medication called oxybutinin. It has literally been life-changing for us all.

HTH

wingandprayer · 04/10/2009 21:38

That's interesting PC - what was actually causing the wetting? If it's not too cheeky to ask how wet was she getting? Was it all the time or just occasionally? Despite numerous infections DD. Only actually been ill once. Normally no symptoms except increase in wetting. Doctors have said given level
of bacteria in her wee she should be really poorly but she never is.

I also ask because worryingly while I was getting DD dressed yesterday I actually saw her "leak". There is no way she could have passed that small amount and then held in the rest and I sent her off to the toilet afterwards and she didn't have a full bladder. So now I really am confused because a previous GP swore blind it couldn't be a weak bladder muscle and leaking was purely down to UTIs.

wigglepants · 04/10/2009 22:23

I have been lurking and have a question. My DD, who is 7, also has problems with recurring UTIs and wetting herslef. She has also had this odd habit of "wriggling" in her chair. She is... erm... rubbing helself... possibly for pleasure. Her Dad and I have both tried to convince her stop but no luck. Is this related to the UTI? Do other children with recurring UTIs do this? Or is my 7 year old just playing with herself . Her teachers have noticed and called me in to talk about it. The school nurse has also called me. I don't know what to to think.

PrettyCandles · 05/10/2009 09:15

Dd was daignosed as having an irritable bladder (AKA I think as an overactive bladder). It seems that somehow the messages don't go from bladder to brain properly. She may genuinely not recognise the physical urge to wee. At the same time, her bladder can trigger to empty itself even if it is not full. And there is no build-up, no dawning awareness of an increasing urge, just a sudden need and seconds later - wee.

The paed said that it was a matter of maturity. Physical or emotional. Either things would eventually sort themselves out and she would be just like anyone else (which might not be until puberty, there's no knowing) or she would develop the emotional maturity to deal with the stuation, knowing that she has to go whether or not she feels the urge. She would also have to become sufficiently aware of herself that she could deal with distraction as well. Which might also not be until puberty, or even later!

Dd could wet herslef several times a day, to any degree. She would rarely admit to it, so we were dependant upon the teachers noticing that she was wet. Of course, there's smell, and chaffing as well, to worry about. Often you could see her jiggling about, obvioulsy needing to wee, but totally unaware of herself. Sometimes there would be no warning.

The norm would be smelly knickers every night (ie she had leaked during the day, though not had a big wee in her knickers), with a bigger accident a couple of times a week. Sometimes there would be good phases of 2-3weeks, where she was dry all day several times a week, but just as often there would be bad phases when she was properly wetting at least once a day every day. She would often complain of sharp needle-like pain on weeing, or during the night, and this would often be before or during a bad phase, but tests never showed anything conclusive.

She had an ultrasound which confirmed that eeverything was structurally OK, and that she was emptying her bladder completely.

The medicine that the paed wanted to prescribe, Oxybutinin, is a fairly strong drug, with potential short-term and long-term side effects. It's been in use for many years, and is fairly safe, but, nonetheless we were not keen to put dd on long-term medication for something that could possibly be managed. The school was very supportive and understanding. (Dd is in an infant school, where the children are younger and closer to babyhood. Had she been in a primary school, or older, at junior school, it would have been a different matter.) So we held off using it for about 6m, until dd's teacher reported that other children were begining to notice that she wet herself very often.

Dd has been on the medication since spring. We had 6w of distressing side-effects: her lips were so dry that they cracked an bled, but worse was the most appalling behaviour you could imagine. It also gave her terrible reflux, 5 or 6 times a day, whcih frightened her as she thought she was going to vomit. All these side effects are warned about in the medication leaflet.

It took a couple of months to find the right dose. Fortunately it is just above minimum dose. The side effects cleared up and changing from liquid medication to tablets stopped the reflux. Though she still refluxes if she takes it on an empty stomach.

Her wetting is not 100% under control, but is now at a level that most people would consider acceptable in a 6yo. We felt it was tolerable, and possibly also important that dd be aware that there is a problem she needs to learn to deal with. She still needs reminding to go to the toilet, still denies accidents, but her control is much better. And she very rarely gets the pains that we thought were UTIs.

We also think that, if it's completely controlled, how will we know when to take her off the medication? If we just give it a few months and then try without the medication, and find that she still wets, then we will have to go through the side-effects again. Which nobody wants!

So that's where we are.

BTW, dd is still in night nappies, and the paed warned us not to expect her to be dry. But in the last couple of months we find that, if we lift her at bedtime, she is often dry in the mornign.

HTH.

PrettyCandles · 05/10/2009 09:22

Wiggle, could she have mild thrush? Although the symptoms include a discharge, it is perfectly possible to have it without the discharge. It's intensely itchy, and the wriggling could be about that.

Though if the wriggling is, as you suggest, for pleasure, we have to accept that that is normal - even if socially not quite appropriate.

Try Canesten, see if it helps.

wingandprayer · 05/10/2009 09:56

Thanks for all that PC. It does seem that my DD shares a few more symptoms with your DD and her wetting is very similar to your description, except she is generally dry at night and doesn't complain of any pains.

I shall be keeping en eye on her once the antibiotics have had a few weeks to kick in and if things haven't improved with the wetting in 4-6 weeks will be back at GP's to push for more and will mention irritable bladder. The side effects sound horrible it must have been really tough for you all but am glad to hear things have worked out now.

Regarding your post Wigglepants, DD also likes to wiggle! I think it is a pleasure thing in her case so we tend to leave her to it, though she does it in bed when she settles at night. Bit different is it's the middle of Tescos!

wigglepants · 05/10/2009 11:25

Thanks for the responses. I hadn't thought of thrush. How do you treat thrush in a child? I think there is a pill for adults but it's probably too strong for children.

AtheneNoctua · 05/10/2009 14:28

I wonder if DD has thrush from the ABs... and not further signs of an infection. How does one treat thrush in a 6 year old?

One more week until we can go see the GP (I hate all the waiting around on the NHS!!!)

OP posts:
PrettyCandles · 05/10/2009 14:41

Canesten cream is suitable for all ages.

MABS · 05/10/2009 15:39

Dr Anne Wright /Mrs Patil (paed urologist) at Evalina Childrens hospital,St Thomas, are brilliant with wee and poo! my ds has been under them for 4 years, truly marvelous. PLEASE get referred to one of them.

AtheneNoctua · 05/10/2009 15:42

Thank you, MABS.

OP posts:
MABS · 05/10/2009 15:44

my son has a neuropathic bladder and self catheterises 5 times per day aged 9. I have a lot of knowledge re this subject,tho only in boys, have had to have Please cat me if i can help.

I just cannot sing the praises of the Evalina highly enough, tho it took me 2 years to get there and find them

AtheneNoctua · 05/10/2009 15:47

Oh gosh. I'm not really sure what that is but I think he has it worse than my DD. Poor little guy.

OP posts:
MABS · 05/10/2009 15:56

sure my ds is worse, but it took a while to get the diagnosis, sue your dd will be fine, but they are really great at that hosp x

Strix · 26/01/2010 14:03

wingandprayer, how are you doing? WE have started ditropan and it seems to be helping. Incidentally, I am AN, have changed my name.

Strix · 26/01/2010 19:33

bump

foxinsocks · 26/01/2010 19:37

btw AN, if you are still looking for someone, dd saw a paediatric urologist at C&W. I can look up the name if you like. She got referred there for recurrent UTIs (when she was being seen there for her allergies).

The actual urologist was male but all the tests/scans were done by the nurses who were mainly female and lovely (v v kind and understanding).

Strix · 26/01/2010 20:14

Hi fox. I am going to the GP tomorrow night to discuss this. The ditropan seems to really be working. I'm going to see what she says but I would like to know why it is working. Does this mean the UTI damaged the nerves in her bladder? Does it mean the incontinence cause the UTIs? I am less than impressed with Kingston Hospitals second paediatrician. The first one I liked, but she ran off on maternity leave. And her replacement seemed to think nothing neeeded doing. And she wrote a letter that misrepresented much of what I said to her -- probably because she had her registrar write it. Her registrara wasn't in the room so would have only had her notes to go on.

Anyway, in spite of my frustrations, we seem to have the right medicine now.