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AIBU?

Aibu to make a gp appointment because I panicked myself with Google

35 replies

pelicantown · 10/02/2017 02:30

My dd is nearly 7and has never been able to use the toilet consistently. She does use it but has multiple accidents a day and has no bladder control at all at night (so we are not talking a single accident at night - it's constant wetting through the night like a baby).

She has some behaviour issues and the gp referred us for assessment for autism but I'm told the wait is long for an appointment.

Anyway. Recently I was googling for suggestions of how to help her with daytime wetting. I am so lost what to do - nappies don't really fit anymore and the nighttime pants just don't hold enough.
Our house is wrecked and tbh we are running out of money to replace and repair things - both from her wetting and her destructive behaviour.

While googling I found a post by someone with spina bifida occulta who describes a gap in the bones of their spine which you can feel . She also had similar incontinence issues .

My dd has a gap like that - so bumps down her spine gap which is smooth then the rest of the bumps . You can feel it and also see it since it's clearly a gap in the bumpy bits of her spine that none of my other children have.

I have always noticed it but tbh not thought about it I just assumed it was just how her spine was and always has been. After reading that I'm starting to wonder if the two things could be linked.

BUT I feel a bit stupid taking something I googled to the doctor - my gp was pretty upset when I googled the medication I was prescribed when pregnant so I can't imagine this will go down well.

Aibu to call up for an appointment based on a 5 year old post I found on an obscure forum on google? Seriously have I gone mad in desperation?

OP posts:

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CatherineCawood · 10/02/2017 02:35

Hi there. I would have thought that that condition would have been picked up at the newborn or 6 week check. However you should definitely make a gp appt. Good luck.

PerspicaciaTick · 10/02/2017 02:36

It sounds like you are all having a really tough time and that you are getting minimal support for your DD from your GP.
I think it sounds very sensible to go back and push the GP for more support, appropriate referrals for continence issues etc.
Have you come across www.eric.org.uk/helpline - they support children and parents dealing with continence issues and might be able to offer practical advice.

GinIsIn · 10/02/2017 02:37

I would be changing GP, and making an appointment.

AntiQuitty · 10/02/2017 02:39

It seems like a perfectly reasonable thing to do.

Ds1 was referred to the paediatrician at 10 because of his bedwetting and urgency issues and checking his spine was part of the appointment.

pelicantown · 10/02/2017 02:40

I have looked at Eric and we have tried various things but the issue is that she just leaks all the time rather than dry for a few hours and the wetting so it's really difficult. So she uses the toilet wonderfully and yet still sets herself in between.

OP posts:

SharkBrilliant · 10/02/2017 02:42

Put your mind at ease and make the appointment. You'll be thinking about it until you do so might as well just go for it.

I'd probably be upfront with the GP and say that you turned to google in desperation and since your DDs spine looks different to your other DCs you thought you'd make an appointment, just to check it out/put your mind at ease. I'm sure GPs hear similar from concerned parents all the time

PerspicaciaTick · 10/02/2017 02:46

That must be so hard for her to cope with. I really hope your GP steps up for you.

pelicantown · 10/02/2017 02:48

Thanks everyone - I am terribly stressed about her (obviously lying here awake at 2:45 am ).

I just don't know what to do anymore!

OP posts:

YawningHippo · 10/02/2017 02:50

My son has very similar issues ( i.e. Is 7 and leaks constantly, he has no bladder control due to a rare condition) he also has a primary condition in addition. He is in nappies constantly and is doubly incontient. PM me if you'd like someone to talk to.

pelicantown · 10/02/2017 02:54

Yawning - thanks! The major thing I'm struggling with is where do I find nappies that fit and hold enough . When I asked my gp that a few months ago he looked at me like I had two heads or something!

OP posts:

YawningHippo · 10/02/2017 03:00

My son is an average sized 7 year old and I use Huggies drynites with him, day and night. They go up to age 15 in boy/girl designs. You can ask to be referred to your local incontinence team for assistance, they prescribed him nappies but I prefer pull ups for him and they didn't do them. The nappies are huge and very medical looking. He gets changed ever 1-2 hours or more if he's having a poopy day. The weeing never stops, despite multiple ops to fix his condition.

reuset · 10/02/2017 03:00

I'd second trying another GP. I'm surprised how little support you've been getting.

Try not to worry.

pelicantown · 10/02/2017 03:03

Yawning I have really tried not to put nappies on her in the day because I just feel like she shouldn't have them on - she has no diagnosis of anything although both school and the gp have told us there are clearly issues.

At night the pyjama pants leak within a couple of hours - do you find you have to change it multiple times at night? Should I just expect that?

OP posts:

YawningHippo · 10/02/2017 03:06

I personally would recommend requesting a paediatric urology appointment, somewhere with a urodynamics team, GOSH is where we go, as only there and Manchester deal with my son's condition. They can then help with investigation, diagnosis, treatment and refer for local help. My local hospital can't do any of my son's care because it's not equipped, yours might be similar.

AntiQuitty · 10/02/2017 03:10

Amazon have big nappies. We use Molicare for ds2 (ASD) as he leaks through night time pull ups.

YawningHippo · 10/02/2017 03:12

I know what you mean, I'm used to it now and my son's school are wonderful so it's not a problem but it is hard having a 7 year old in nappies. You have to remember to take them with you, and spare clothes, and no where caters for a mobile child in nappies!

Get the school on board so that you have something to show the GP how much this is having an effect on her day to day life and needs immediate investigation. A report from her teacher possibly?

I limit my son's fluid intake in the evening as he has a very small bladder and no muscle control so large amounts can overload it. I get through the one nappy at night with him. I had it worked out that he could have 100ml of fluid an hour from waking until 5ish to give him his daily amount.

YawningHippo · 10/02/2017 03:14

I should add that the one nappy is still full by morning! But unless he's ill and up already it gives me the night at least with no major leakages.

pelicantown · 10/02/2017 13:09

Thanks yawning!

OP posts:

clairethewitch70 · 10/02/2017 13:16

I have a spina bifida occulta - it is only visible on my X-rays and not by looking at my back. I have no continence issues apart from interstitial cystitis.

MockTurtleSoup · 10/02/2017 13:21

Have a look at Euron Form website, also invest in a Kylie for her bed. Have you tried your local health authorities incontinence team?

AntiGrinch · 10/02/2017 13:28

You do need help and you should see a dr. but don't go and see the one you saw before. (s)he sounds horrible if there was such strong disapproval of you using google and asking for advice about the nappies. I know that feeling but it's completely their fault, not yours. You need a dr you can be honest with and that includes telling them what you found on the internet. Asking about the nappies is totally fine, if the dr didn't happen to know there's still no reason to stare at you.

I am so sorry you're up at night worrying, it's the worst thing. good luck .your dc is lucky to have you.

FourKidsNotCrazyYet · 10/02/2017 13:31

Definitely make an appointment. I know a lady who's just been diagnosed with this (she has sadly lost the use of her legs after a very minor accident). And she was 23 at diagnosis!

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Noodoodle · 10/02/2017 13:34

Also agree with pp regarding change of doctor and asking for further investigation. If it were me actually I would push for it, not ask. 7 year olds (imo) shouldn't need nappies surely, and I say that as having had a ds who routinely wet the bed at night until age 13. He just slept very deeply and couldn't wake up in time but had total control in the daytime. The gp still investigated for any urinary isues. It's the day issues that would bother me. Waiting too long and having an accident because they're "too involved" in something is one thing, but not realising the need to go every time is another. Have you tried periodically reminding her to try using the loo in the meantime to try and catch some of the inbetween accidents. Major sympathy for you and dd, I hope gp can pull their finger out and look into it further for you.

MockTurtleSoup · 10/02/2017 13:53

And your GP's attitude is shocking, so yes, change him or even surgeries if you have to.

Brokenme · 10/02/2017 14:14

Sorry to hear your DD is having difficulties. Have you looked at tethered cord syndrome? I have this and it has caused my continence issues since I was a child. I'm now in my late 30's and only just getting it (hopefully!) treated. And agree with others whatever it is causing it you need to have some answers so go back to the GP. Good luck!

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