Overactive bladder...HELP NEEDED!: Hi everyone... So... - ERIC

ERIC

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Overactive bladder...HELP NEEDED!

Mickilou profile image

Hi everyone...

So....my almost 5 year old has been consistently having day time dribbles, urgency to use the toilet, refusing to go even when jiggling and crossing legs, going for a wee several times in short space of time and having zero dry nights at all! He was potty trained at 2!

The incontinence nurse, after a few appointments, diagnosed him with an overactive bladder. We have tried drinking lots more, encouraging to use the toilet at regular times etc and nothing seems to be working. She mentioned medication and I'm just wondering if anyone has experience of it with their child?!

I feel so sad and helpless for him. But he doesn't even seem to be aware or bothered when his pants are wet. His bed is soaked most mornings, despite wearing a pull up (tried different sizes!).

Please can anyone offer any help or advice?!?

14 Replies

Overactive bladder is difficult, some kids react well to bladder training, that's encouraging him to hold his wee for longer and longer to enlarge his bladder.

But sometimes that just means bigger accidents, do you know what medication they are suggesting?

Medication would be the easiest route, apart from putting him back in pullups, but that's obviously not a long term solution.

What pullups are you currently using at night?

Mickilou profile image
Mickilou in reply to StellaA

No I didn't ask which medication think I just sort of freaked out when they mentioned it! He doesn't need to be in pull ups during the day really, I don't think. He never wees to the point of their being a puddle. Normally damp pants. Sometimes through to trousers.

I was using Tesco size6 but have gone back to the pyjama pant ones age 4-7 I think?? The ones with Thor and Iron Man xx

I would recommend ruling out constipation (if you haven't already) before starting any medication, best wishes 🦋

Mickilou profile image
Mickilou in reply to Teddy500

Yes we have. He isn't constipated. Goes once a day. Normal consistency etc xx

My daughter is 6 and sounds exactly the same as your son. We have tried oxybutinin and desmopressin at night. They just kept upping the dose until she was having bad side effects. I went to a private paediatrician who stopped all medication and started laxatives. Nearly a year later we are no further on, waiting for review appointment with urologist but with covid restrictions it has been delayed.

Mickilou profile image
Mickilou in reply to Hls494

Sorry you've had such a rubbish time. It's so frustrating isn't it. Just wish we could make it all better x

Hls494 profile image
Hls494 in reply to Mickilou

Yes I completely understand what you are going through and it’s not fair on them, they can’t help it. Hopefully the medication helps your son. We would try anything

Your son sounds a lot like mine. My son was also potty trained at 2 and dry for 2 years before his bladder problems, and was never dry at night. He would be soaked through in the day and either not notice or just didn't care. He wore pull ups at night that were so full they often leaked, he never woke up to go to the toilet, not even when his clothes or bed were soaked.

My son had his first dry night a few months ago at 8 years old, and that was with the help of bladder training, medication and a bedwetting alarm. He is on 240mcg Desmopressin (Desmomelt) for the nighttime and hasn't had any side effects. We use the Dry Easy alarm at night which you clip onto their underwear - it has a vibrate function which is effective enough to wake my son every time it goes off despite him being a deep sleeper, and the vibrations don't wake up the rest of the household, unlike the beeping! He has gone from being soaked through or in pull ups so full that they leaked in the night, to getting up to his bedwetting alarm sounding 1 or 2 times with a tiny wet patch in his underwear or sometimes sleeping through the whole night and waking up dry.

Our hospital had us measure my son's wee in a jug for a few days, he was doing lots of small wees and has never been constipated, but is now going less frequently and doing bigger wees. They advise drinking more to stretch the bladder, but this may take a little time. More drinks and spaced out throughout the day should help stretch the bladder so it can hold more wee. My 8 year old son has 250ml every 2 hours, 6 times a day, they advise 6 to 8 drinks, 1.1 to 1.3 litres a day for 4-8 year olds so you would want to give your son more like 150-200ml. My son also goes to the toilet after every drink so his toilet trips are also evenly spaced out, often this is enough for him, but sometimes he will make an additional trip in-between. My son has gone from 5 or 6 accidents in the day to 1 or none by doing this, bladder training and medication - he is on 10mg Oxybutynin with no side effects.

Obviously, all children are different, but we have been fortunate that my son hasn't had side effects from the medication. The hospital sent us lots of information to read through before making the decision to go ahead, but I was at my wits end and had tried everything we could to help him before turning to medication.

Mickilou profile image
Mickilou in reply to Unicorn84

Thankyou so much for your reply. Your situation sounds so familiar!! Thanks for the advice xx

gaomeile profile image
gaomeile in reply to Mickilou

The toilet training schedule above is a really good description and I'm so glad that to hear the success story of Unicorn84. It works well for us too though it's hard to keep up consistently. My son is so fed up of being told to go to the loo.

There isn't much information on bladder training for overactive bladders out there that I can find for those who can't feel it and end up soaked without realising. My son is 5 and pees about 50ml each time (should be more like 210ml). We are waiting for an appointment with our local bladder and bowel community service but in the meantime I took him to a private paediatrician and then a urologist both of whom just told me to drink more and "hold it" and advised against medication at this age. "Hold it" and my personal favourite "pee every two hours" is so demoralising to hear for an overactive bladder with accidents every half hour or so - my son will often tell me he just doesn't feel it.

Both were also adamant that food has nothing whatsoever to do with an overactive bladder. It's a very different approach than in Australia which has strong link between food and overactive bladders.

Hi there - I have an 11yr old with ongoing irritable bladder issues which started when he started school in Reception. He was never really totally wet in the day, just dribbles and damp patches as you describe. He also soiled himself up until about Year 4. He has nearly always been totally wet at night and is still in pull ups at night time.

Things you should push for (and that the continence nurse should do before prescribing meds) are a scan to check he's not constipated and to check bladder function and capacity. In my son's case he was bursting for the loo and convinced he was going to pee but the scan showed he was only 1/3 full, hence irritable bladder diagnosis.

You're doing the right thing with encouraging plenty of drinking and regular toileting.

It's worth thinking about how he is at school and if there's anything causing issues there. In my son's case a lot of the triggers for it starting were being afraid of using the school toilets, worried about asking to go in lessons, not wanting to go by himself when he was younger etc etc.

He has been on three different medications for day time wetting over the last few years - oxybutynin (the usual first line treatment) did help a bit, but it triggered severe anxiety and panic attacks. It wasn't immediate, it was a gradual build up so took us a while to notice the connection, but it resolved once he stopped taking it. The second, Tolterodine, was no more effective in controlling the bladder issues than oxybutynin, but it was side effect free for him. He then tried solefinacin to see if it was any more effective, but that triggered the anxiety and panic again, so he's back on the Tolterodine now.

After six years of dealing with it all, my best advice is to get them drinking little and often. My son is a camel and will happily go all day without a drink, but is usually wetter as a result. He now has a vibrating watch that reminds him to drink 150/200ml every hour and he has made great progress this year in upping his volumes and staying dry.

I would also add, go easy on yourself and on him. It can be exhausting to deal with, and you can become a bit obsessed with pee volumes and daily pants checks. I've been so desperate to fix it for my son and for a long while it seemed like he didn't care (he did, he was just little and confused and trying to deny it was happening) which made it even more frustrating. There is no quick fix, even with the meds it takes time, but you will see progress, hang in there!

Hls494 profile image
Hls494 in reply to profyaffle

Can I ask what scans your son has had? My daughter has had ultrasounds and one you pee on a toilet and they scan to see if bladder is empty. It’s interesting to hear about the other medicine, the oxybutinin gave her heart palpitations and I think caused the constipation which she never had before starting the medication

profyaffle profile image
profyaffle in reply to Hls494

Hiya - so he had one ultrasound early on where he was called at a certain time and told to make sure he hadn't peed before hand and then made to wait and wait and wait until he was so desperate he was in tears (which wasn't much fun!) and they scanned his bladder to see how full it was (about a third full). Then once he'd peed they checked it was properly empty. They also checked to make sure bladder was formed properly and that his bowel wasn't causing problems.

He's also since had the uroflow scans where he has to pee on the magic toilet (just a boring cardboard bowl, disappointed it didn't have bells and flashing lights!) and then be scanned after to make sure he had emptied properly each time. She also checked how full his bowel was at the last one.

Mickilou profile image
Mickilou in reply to profyaffle

Thankyou so much for your reply. So helpful. They did a bladder scan but she couldn't really see anything it wasn't v clear!! Xx

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