Drinking : So my 5 year daughter is on oxybutynin and... - ERIC

ERIC
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Drinking

Jtax
Jtax

So my 5 year daughter is on oxybutynin and is meant to drink 1.4litres a day. I can barely get her to drink anything during the school day and absolutely struggle to get it into her in an evening! Does anyone have any suggestions how they get their children to drink that amount consistently? Have tried change of bottle, putting on to packed lunches so taking a drink for playtime and lunch, she's already on flavoured water so changed the flavours. Even tried bribary for treats, losing the will! X

28 Replies
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Fruit juice, infusion bags, squash, Nesquik.

We used to race my son when he wouldn't drink his Movicol. He always wanted to win so he drank it fast. Use different straws to make drinking more fun. Jelly?

Jtax
Jtax
in reply to Alicass

Thank you, it's such a struggle. We use fruit juices and squash but never tried infusion bags will give them a go. Was told by the nurse that milk was classed as a food and not counted as part of her daily volumes. Hard when they're at school and you're not there to prompt all day x

Mine will drink anything as long as they have a straw- just a drinks carton straw that I reuse 😂🙈. Good luck!

Jtax
Jtax
in reply to Samk82

Thank you! Bought so many funky cups to try and make it more fun, such a pain lol x

Hiya - my daughter was also on oxyb for a while and also has long term bowel issues almost certainly down to an incredible talent to not drink when she was younger. We had a break through when she was 4.5 by setting up a chart on the wall with columns for breakfast, snack time, lunch, pm snack and teatime and she got to tick off when she had a drink. I started by giving her 25ml in a tiny shot glass and gradually increased it over the weeks until she was drinking 150-200ml per ‘drink time’. 25ml is nothing and doesn’t feel as scary as being asked to drink a massive glass! I think I might have even provided a choc button for drinking it. I know having such a tiny amount doesn’t help you get to you 1.4l now but you will get there in time. Slow and steady will win on this one to help her get used to drinking bigger volumes. You could try getting her to down a couple of tiny drinks per session to get there sooner if you think she’ll do it.

My only other tip that has always worked for us is to tell her not to drink it (with a wink) and then turn my back, count to 10 and then when it’s gone accuse the cat of drinking it. Hilarious apparently! 🤷‍♀️

More generally, having set times to drink really helps with an overactive bladder anyway as it helps the bladder learn to fill and empty so the chart approach should help her more generally.

I know this doesn’t really help with school - I started off the chart during a half term to get it going and then school carried it on for me just by making sure she had a little drink at snack and lunch and getting her to tick it.

Good luck xxxx

Jtax
Jtax
in reply to Helen36

Thank you for your reply, some fabby ideas here I've not tried! Will definitely try a charted approach (aswell as fun 😁)! X

We have the same issue. I have bought a bottle in IKEA which you can put fruit into the a central chamber which is currently popular. We also make banana milk shakes so a bit horrified to find out that doesn't count. Can that really be true? Also dentist is telling me Ribena a no no. Anyone know no or low sugar diluting juice. It is a total minefield isn't it.

nhs.uk/live-well/eat-well/w... milk definitely counts as fluid intake. As for squash, we buy any supermarket own brand no added sugar squash. My view might be controversial but I'd rather my daughter drink and run the risk of tooth decay than drink nothing as that is how much of a poor drinker she is. It's still an ongoing source of stress.

Jtax
Jtax
in reply to RuthRosetta

I called her nurse earlier to double check the milk thing, she says whilst milk is a drink it's not one that's counted towards her daily volumes and can make bladder/bowel problems worse. I'm in Scotland not sure if things maybe differ! Was feeling hopeful too cause she loves a milkshake. Also no to smoothies but jelly however can be counted!

I also give fruit squash too, she'd never drink plain water all day long X

RuthRosetta
RuthRosetta
in reply to Jtax

Granted I'm not a nurse or medical professional but it would seem impossible that milk can't count at all towards fluid allowance at all. My daughter for the majority of her life has literally survived off milk and jelly as her fluid intake (apart from what's in food). I now water down her milk as I do appreciate too much cows milk isn't good for constipation, but it's the only thing she'll drink in one go so I figure that's better than nothing. I'm interested why smoothies don't count either. Our GP said fruit is a great source of fluid.

Jtax
Jtax
in reply to RuthRosetta

I really don't know the ins and outs but she's a trained specialist continence nurse who works alongside the urologist. She says whilst milk is a liquid it would not be able to be counted towards her volumes. Perhaps because my daughter has bowel problems (constipation) also aswell as bladder this is the reason. Then adding that oxybutynin has already caused us to need another bowel disimpaction. Can only go by what the specialist is saying, maybe each case is just different 😊 my daughter loves milk too so would have definitely helped x

RuthRosetta
RuthRosetta
in reply to Jtax

How frustrating for you, my daughter is chronically constipated hence me watering down her milk. I'd be so interested to know the science behind it. I took oxybutynin myself for a while and it made my own constipation absolutely dreadful and my mouth was so dry I couldn't go anywhere without water, so I can appreciate why it's so important for your daughter to have lots of liquid. Xxx

Jtax
Jtax
in reply to RuthRosetta

What a shame, its horrible to have them struggle isn't it, she she on a laxitive to help.

Thank you, it is a pain, didn't help that I didn't recognise the signs either, she had some lose stools a few weeks after taking it, this went on over a few days so I stopped her laxido thinking she had diarrhoea 🙄 but was just the loose stools that were making it around the impaction in her bowel! Wasn't until she was examined that I realised she had an impaction and I should have upped the laxido. Won't make that mistake again.

Going to make up a chart and try to start with smaller amounts again and build up. Was easier in the summer she drank loads, winter months ain't so easy x

RuthRosetta
RuthRosetta
in reply to Jtax

It really is horrible having them struggle, you just wish you could get them to understand that by hardly drinking they're making things worse for themselves. My daughter (nearly 3) has been on long term laxatives since the end of October. She's a stool withholder too, she'd be happy if she never had to poo. It's a very stressful situation. It's hard getting her laxative dose correct as she's so inconsistent with her drinking that sometimes I end up giving her really runny stools as I'm not psychic and don't know how much she's going to drink. For example apart from her watered down milk this morning, all she's drunk is about 25mls of squash and a few spoonfuls of jelly which is absolutely awful! Yet another day she'll drink about 400ml which is a vast difference. I was told on here about a marvellous Facebook group called Movicol Mummies (movicol and laxido are the same thing). I was wondering if you might get drinking tips in there. In fact I might ask for myself! X

Jtax
Jtax
in reply to RuthRosetta

Aw what a shame, that would be so hard to manage! Also hard when they're so little and don't fully understand.

Thanks very much for that I'll go and have a look for that group. It's nice to know you're not alone and get tips from people who are further on aswell 😊 x

Jtax
Jtax
in reply to Turquoisepoo

Worth asking your nurse, maybe different areas have different ideas, hers is bladder and bowel issues so maybe it's different advice for different things. I called her nurse to double check in the hope milkshakes would be a winner but she said whilst it's a drink it can't be counted into her daily volumes. Booo! X

No added sugar jelly is my best tip. Lots of people have suggested ice poles to me but my daughter only has a bit then discards it. Showing solidarity. It's a huge stress for us too. We've tried every bottle on the market I think!

Jtax
Jtax
in reply to RuthRosetta

Thank you, jelly is on the shopping list, also not sure why I never thought of ice lollies 🤔😂 another thing I'll be adding. She also said need to get back onto the school again because they should be making sure she has half her daily volumes whilst there. It's a constant battle huh! X

I feel your pain. We have been doing the same battles with both kids. Lots of good ideas posted.

Here’s the list of stuff we have tried; letting them pour drink out of a metal coffee pot into cup themselves, variety of reusable straws, chart for 6 drinks and 8 wees with stars and rewards for 1 day completed and then reducing to a few days and a week at a time, drink races, mum and dad having an even bigger drink each time as an example, saying cheers repeatedly! Measuring out the days liquid and putting it into 6 bottles to show how much water their body needs, talked about which bird of your body don’t work well if you don’t have enough (hard poos, crusty bogies, dry skin, concentration etc), home made ice pops (they don’t realise this is a drink for some reason!)

The biggest change for us was getting rid of small ‘baby cups’ which only let you do tiny ‘baby wees’ and only having 6 big kid drinks for big wees. School are responsible for getting them to drink 3 of those bottles so I only have to pester for one in the morning, afternoon snack and dinner time. If they hang drunk at school I don’t think it’s possible to catch up for the day and conversely if they have them you know you’re half way there!

Good luck. Hopefully they will stop fighting it and get into a drinking habit over the next few weeks! Deep breaths in the meantime....!

Jtax
Jtax
in reply to Kate_monster

Thank you! The chart thing is definitely the way forward, going to also split into smaller bottles and do that with her also.

So hard with the school, spoke to her nurse again today and she said get back in there, they should be making sure she has half her volumes there. Spoke to her teacher again yesterday but will make another meeting again if it doesn't at least improve.

Going to slow it back down, start smaller again and build up it was so easy in the summer she was drinking loads, didnt realise how much harder it would be in the winter months x

My 5 year old is the same. I’ve bought bottles with lines on and said just get to the next line which helps. Can you get school on board? We have a medical plan which states she needs to drink x amount in the day. She will drink when a teacher asks so maybe speak to school. Really good luck. I totally understand what you are going through. I sometimes feel I’m the only one who cares about getting my daughter to drink and it’s so isolating. You’re not alone x

Jtax
Jtax
in reply to PinkTCC

Thank you, it is totally isolating and feel like constantly nag her and the teacher! She has a plan in place but still they don't seem to do much in way of drinking! Spoke to her teacher again yesterday and spoke to her nurse today. She said if no change will need another meeting with the school.

I will definitely be adding lines to her bottle, great idea 😊 x

Yes, lines on a bottle (one for break time, lunchtime and home time) really helped for us. Our bladder clinic asked the school to allow my daughter her drink on her desk so she didn’t have to get up all the time to have a drink. Also drinking with her, like a race. Ice cubes? My daughter loves these in her drink. I’m afraid we were advised to avoid all squash and fruit juices etc on a regular basis as this can irritate the bladder further - not very helpful I know if she doesn’t like plain water!

Jtax
Jtax
in reply to Hjmilward

Thank you, definitely going with the lines. We were toldnshe could have well diluted squash to help get volumes in but avoid berry based ones.

The racing sounds fun, and will pop some ice cubes in the freezer 😊

My understanding on the milk thing is that the dairy/protein content can have a slight constipating effect (not balanced out by its water content) so if there are bowel issues they always recommend limiting intake. Blackcurrant is also not recommended for children with bladder/bowel issues although I think most children find this goes straight through them so a child with an overactive bladder doesn’t stand a chance! My daughter is 6 now and we are largely out the other side of the bladder problems (albeit still on movicol and sodium picosulphate to manage bowel). Once the oxyb had started to work I was able to see that certain drinks irritated her bladder more than others and if you look at my previous posts there is a thread on there about that. Anyway, just wanted to give you some hope that people do come out the other side of this :)

Jtax
Jtax
in reply to Helen36

Thank you, I will go back and look for your previous post ☺️ we were told to avoid berry based drinks and stick with orange based or apple juice very diluted. That's amazing your daughter is coming out the other side! 😁 We started the laxido in July, then the oxybutynin in October. Can I ask how long was she on the oxybutynin? X

Helen36
Helen36
in reply to Jtax

It was 18 months in the end, much longer than we thought it would be when we started. 😟

We started on a low dose and went up to the most she could be on for her age and then had a dry phase (literally the most amazing thing in the world ever) and was able to reduce back from there. I think she was probably on it longer than she needed to be because she would still have wet accidents but we were then able to see that this was mainly driven by what was going on in her bowel rather than the bladder still being overactive. By upping her movicol and using a stimulant we were able to manage and prevent the wetting and take the oxyb away.

The overactive bladder in children is usually caused by the bowel continuously pressing on the bladder which makes the valve at the top of the urethra thicken to try and hold the wee, which makes it leak. so if you can get the poo moving well so the pressing isn’t happening and then calm the bladder with the oxyb the valve can recover and you are then happily able to focus on the constipation side of things. My top tip is keep the poos as soft as she can bear to help keep the bowel away from the bladder. But then drinking more laxido is probably not want you to hear!!

Thanks for all the good advice. It is so helpful to share what works. Thanks again,.

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