9 year old daughter daytime and bedtime wetting

[CatherineW84]

Hi, I'm new to this, just looking for some advice really. My 9 year old daughter has been daytime and bedtime wetting since we started toilet training her nearly 7 years ago, she attends regular hospital appointments and in feb of this year she had a small minor operation to stretch her bladder slightly. On top of that she is on regular medication, she takes a slow release oxybutynin, she has recently started on desmomelts about 4 weeks ago, at the same time as that the hospital started her on a tens machine which she uses 3 times per week. She also takes 5ml of trimethoprim every night to prevent urine infections as she used to take them regularly. She uses a woble watch to remind her to go to the toilet, especially when at school, although she still comes home most days wet or smelling of urine, she is getting to an age where she is to embarrassed to get changed incase anyone says anything to her. We keep a record of how much she is drinking throughout the day and she stops drinking an hour before taking the melts, her dad and I don't really know where to go from here, her friends keep asking her to sleepovers which I keep having to say no to and then am left feeling really guilty. We just feel that nothing we try works for her.

[Hidden]

Hi Catherinew84 ,

I am so sorry to hear of your poor daughters experience .

I can imagine how it impacts on your lives .

I have no experience of the bladder issues ( my grandson problem was the bowel ) but as a family we do understand how these problems can feel traumatic and cause a feeling of helplessness .

Have you ever considered consulting with a homeopath ?

Sometimes things can be a constitutional issue and in my experience a homeopath can be of great value .

Keep on researching etc ,

Good luck !

[Marsan15]

My 8YO is similar - we've tried Oxybutynin/Desmomelts but came off them as they made her stomach crampy (on basis why make things even more miserable for her & improvement wasn't that great) and I wasn't happy with the link with Dementia (albeit longer term use). We use Tena liners for her in daytime to give her extra time to make it to toilet or capture majority at least. I put a change of pre-lined knickers in her schoolbag wrapped small so she can change if /when she needs to, so she's in control. Similar to your circumstance she was prone to UTI's every 2 months or so...she's increased her water intake following scans showing she has a smaller than normal bladder for her age & partially voids , and that's helped as not had an infection now for almost 3 months (fingers crossed!). She has over & under-active bladder. She had a wobble and we moved to a Pivotell Vibrate mini floral watch ( see Amazon etc) as it's a bit smaller/attractive which helps. At nights's , which was less frequent for her , we've moved to Girls DryNites so she gets a better sleep & she was quite happy with this - I explained they're sized 9-15 so 'big girls' also have little accidents too. We just call them night knickers , and they're not that bulky so baggy PJ bottoms can hide them. For peace of mind I bought the dip-strips for UTI testing so if I suspect she does have infection I can test and get sample to Docs pretty quick, rather than waiting till I'm sure or worrying I'm putting in samples for test unnecessarily. Hope that helps, but do tell her she's not alone

[CatherineW84 in reply to Marsan15]

Hi. Thank you for your reply,

My daughter seems to be ok so far with meds, but the desmomelts are only a 3 month course along with the tens machine, I'm hoping to see better results soon, I really worry about the amount of medication she takes, don't want her to be on anything long-term. We use the pyjamas pants to, but I think she is getting really frustrated because her brother who is only 2 is fully trained day and night and she is really wants to be able to go to bed with just pants on, but hopefully in time this will happen, it's just really frustrating because it's not something we can just stop for them. She's not had any uti's for a while now so I think the long-term trimethoprim is helping there. Thank you again, I'm glad she's not alone

[Juel1]

Hi

Sorry to hear of your daughter's problems.You are not alone ,I have a 10 year old daughter with a dysfunctional bowell and bladder we have had such a time of it so I really sympathise with you both.

I am really interested to know more of the procedure they have done to stretch her bladder.My daughter has both an overactive bladder plus she can't release her urine only a little so she has to self catheterise she has also had bottox injected in her bladder to calm the contractions down.

She is coming up to her 11th birthday and things are starting to improve I am hoping this will continue with age , i am not sure.

She uses molimed pads and changes them every 3 hours which helps at school and they let her use the staff and disabled toilet which she gets to use on her own and keep all her spare clothes wipes pads etc in. We just kept on pushing for her because school is really difficult especially as they older with this condition. We also put a health care plan in place and we have had great support from the contenance nurse.

I hope this helps a little.

[CatherineW84 in reply to Juel1]

Hi. Thank you for your reply, it's so frustrating for both us as patents and our daughter, her brother is fully toilet trained day and night at the age of 2 1/2 and I can see this gets her down. The procedure was called hydrodistention, they basically go up into her bladder and fill it as much as they can with water, then let it all out again, before the procedure she was only able to empty her bladder 50%, this showed on every uroflow she had done at the hospital, but after the procedure her uroflows are showing that she is empying nearly 100% now, so this is a positive, but the down side was that before she would only wet a little, leaving damp patches but because her bladder is emptying fully now, if she doesn't make it to the toilet in time she is soaking herself. The consultants have spoke about the botox injection, so I think that could possibly be where they are going next. They did mention having to catheterise but because she can now empty her bladder i dont think this is something we will need to do. I'll maybe look into the pads, the school are really good, they have a health care plan in place and she is allowed to just leave class to use the toilet without having to wait for her teachers permission. I'm hoping things get easier with age too.

[Juel1]

Thankyou for letting me know about the hydrodistention procedure. This is great your daughter is able to empty fully,but a real shame that she is still having trouble.I will look into the procedure further. I am a little unsure about the botox I will know a bit more in a couple of weeks when we have a follow up appointment to see if it has been successful or not and if they will give her more?

I do know they have given her a pressure test and it showed her contractions were so strong this would cause the gushes of wet and the botox has calmed it down but it has also stopped her from naturally voiding we are now 6 months down the line and this is coming back and she is still dryer so I am a little unsure.

We have also been offered PTNS ,but this doesn't work together with botox.