Daughters mysterious bladder issue

Kay1111 · 2023-05-04T04:25:07+00:00

My wonderful 4 year old daughter has recently started having bladder issues. 3 weeks ago I noticed she started running back to the toilet after having just finished a toilet trip to do another wee, I thought it was odd and I’d keep an eye on it. The next day full UTI symptoms came, burning when she wees and felt like she needed to wee all the time, so off to the doctors we went and the nurse dipped her urine but couldn’t find anything so gave us a 3 day course of trimethoprim. It seemed to help a little but didn’t cure her so we went back to the doctors and they sent off her urine to be cultured. Nothing could be found in her urine so they agreed to prescribe a broad spectrum antibiotic (amoxicillin) for 7 days. Unfortunately hasn’t helped at all. So now we’re 3 weeks down the line and we have no answers, the doctors don’t know what to try. Her vagina isn’t red or sore looking, I’ve tried worming her and she’s on probiotics. We don’t use bubble bath or soap on delicate parts. She drinks mainly water and a good diet. When she does a wee she feels like dragon fire (her words) and like she needs to do a wee straight away again. This feeling of uncomfort can last between 30 mins and 2 hours. She does sleep with no issues thankfully. I am worried she’s now holding in going for a wee as she doesn’t want to feel horrible again 🥺 I am desperate to help her, I hate seeing her like this, it’s really affecting her and I just want this all to stop for her! I have sent off a sample of her urine to a lab that does a longer slower culture to see if they can find any bacteria and we’re waiting on a referral to a specialist Does anyone have any experience of this or any ideas of what could be going on??

Are your children’s vaccines up to date?

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Twinsmummy1812 · 04/05/2023 05:37

I don’t have any experience with children having issues but I had something called irritable bladder a few years ago with similar sounding symptoms. Obviously staying very hydrated is the biggest help, and I found cranberry juice (the type you dilute, not Ocean’s Spray) useful. What also helped was Buscopan as that reduced the spasming and cramping, but I’m not sure whether your daughter would be too young, best check with pharmacist or GP. Also, keep her busy, the less time she has to dwell or worry, hopefully the length between wees will stretch.

if this or other similar tips don’t work then keep pushing with the doctors, they should at least offer to ultrasound her kidneys and bladder to make sure all is structurally well.

good luck x

Original poster

Kay1111 · 04/05/2023 05:55

Twinsmummy1812 · 04/05/2023 05:37

I don’t have any experience with children having issues but I had something called irritable bladder a few years ago with similar sounding symptoms. Obviously staying very hydrated is the biggest help, and I found cranberry juice (the type you dilute, not Ocean’s Spray) useful. What also helped was Buscopan as that reduced the spasming and cramping, but I’m not sure whether your daughter would be too young, best check with pharmacist or GP. Also, keep her busy, the less time she has to dwell or worry, hopefully the length between wees will stretch.

if this or other similar tips don’t work then keep pushing with the doctors, they should at least offer to ultrasound her kidneys and bladder to make sure all is structurally well.

good luck x

Thank you for your reply, I also had a brush with something similar about 7 years ago but I think my issue was mainly to do with undiagnosed endometriosis as since I had an op I’ve not experienced the same issue.

She usually goes to the toilet about 4 times a day and she’s recently started doing that again, as she tells me she knows when it’s a real wee she needs or just a small wee. Which is obviously making me concerned she might be holding in too long!

Ive wondered about buscopan before for her but it’s not for under 6 (I think that’s the age)

Ill give cranberry squash a go, it can’t hurt

OP posts:

Coffeesnob11 · 04/05/2023 06:03

Have you checked where the 'dragon fire' actually is? I only ask as when I was younger I had an awful kidney infection that caused these symptoms but it was my kidneys on fire not anything else. I hope you get answers soon.

Original poster

Kay1111 · 04/05/2023 06:05

Coffeesnob11 · 04/05/2023 06:03

Have you checked where the 'dragon fire' actually is? I only ask as when I was younger I had an awful kidney infection that caused these symptoms but it was my kidneys on fire not anything else. I hope you get answers soon.

She’s pointed to her pubic bone so I’m thinking it’s either her urethra or bladder. It’s somewhere she can’t touch she says

OP posts:

Toomanybooks22 · 04/05/2023 06:11

I had this when I was your daughter's age and was told it was UTIs and cystitis. I had to have a lot of courses of antibiotics but eventually seemed to grow out of it for the next 20 years but it has recently come back.

I would caution thinking that the absence of an infection in a urine test is absolute proof of no infection. There is a lot of research now into embedded infections which don't necessarily show up on tests. I'm currently being treated for this now and have been diagnosed with interstitial cystitis / bladder pain syndrome.

Original poster

Kay1111 · 04/05/2023 06:15

Toomanybooks22 · 04/05/2023 06:11

I had this when I was your daughter's age and was told it was UTIs and cystitis. I had to have a lot of courses of antibiotics but eventually seemed to grow out of it for the next 20 years but it has recently come back.

I would caution thinking that the absence of an infection in a urine test is absolute proof of no infection. There is a lot of research now into embedded infections which don't necessarily show up on tests. I'm currently being treated for this now and have been diagnosed with interstitial cystitis / bladder pain syndrome.

Sorry to hear you went through this too

I’m not absolutely convinced there’s no infection left, which is why I’ve found a lab that does a slower culture, I probably won’t hear back from them until the end of next week though, which seems forever away when your child feels like this 😔

How are your symptoms now?

OP posts:

Toomanybooks22 · 04/05/2023 06:28

@Kay1111 thank you very much snd I am so sorry that you and your daughter are going through this.

I think that's a brilliant idea to get a slower culture and I really hope it gives you some answers, I wish I had had that done.

My symptoms were really bad when I was very young so I completely understand how your daughter must feel and how hard it must be for you.

It did eventually fade I really don't know how and I had a lot of time with nothing but it is quite bad now (although easier to cope with as an adult). I can't lie it does impact a lot of things it's basically having cystitis / uti every day for a couple of years so I'm on a lot of pain killers. I've recently referred to Whittington hospital in London so i have some hope for treatment with long term antibiotics as I've had other treatments that haven't worked but these are very much aimed at adults like bladder installations (inserting a form of medication directly into the bladder).

There is a different attitude towards treatments for interstitial cystitis in urology departments in hospitals across the U.K. as some are not so keen to provide long term antibiotics so I would definitely do research on this and see what you think.

Wishing you and your daughter the very best of luck and I really hope that she feels better soon.

Original poster

Kay1111 · 04/05/2023 06:35

Toomanybooks22 · 04/05/2023 06:28

@Kay1111 thank you very much snd I am so sorry that you and your daughter are going through this.

I think that's a brilliant idea to get a slower culture and I really hope it gives you some answers, I wish I had had that done.

My symptoms were really bad when I was very young so I completely understand how your daughter must feel and how hard it must be for you.

It did eventually fade I really don't know how and I had a lot of time with nothing but it is quite bad now (although easier to cope with as an adult). I can't lie it does impact a lot of things it's basically having cystitis / uti every day for a couple of years so I'm on a lot of pain killers. I've recently referred to Whittington hospital in London so i have some hope for treatment with long term antibiotics as I've had other treatments that haven't worked but these are very much aimed at adults like bladder installations (inserting a form of medication directly into the bladder).

There is a different attitude towards treatments for interstitial cystitis in urology departments in hospitals across the U.K. as some are not so keen to provide long term antibiotics so I would definitely do research on this and see what you think.

Wishing you and your daughter the very best of luck and I really hope that she feels better soon.

Thank you, I hope you find something that works for you soon and you’re pain free again

OP posts:

Mumsnut · 04/05/2023 06:46

I would apply sudocrem in between wees. This helps my menopausal self not to go so often - less burning = less
sensitivity = less
feeling like I need to go

DeathMetalMum · 04/05/2023 06:57

I'd probably re-visit GP and ask for another alternative antibiotic. Short courses don't always clear up the infection and can sometimes need to be extended. Amoxicillin also is only reccomend following a positive culture for UTI. So good information here (about half way down) https://bnfc.nice.org.uk/treatment-summaries/urinary-tract-infections/

Urinary-tract infections | Treatment summaries | BNFC content published by NICE

This treatment summary topic describes urinary-tract infections

https://bnfc.nice.org.uk/treatment-summaries/urinary-tract-infections

unlikelychump · 04/05/2023 07:06

Bit random,but my dds dairy allergy triggers a repetitive need to wee. Not so much pain but just the need to go all the time

hilbil21 · 04/05/2023 07:14

I've suffered from UTIs my entire life and have recently been recommended to try Hiprex by a urology consultant which seems to really be helping. It seems to be for 6 and over when I've googled, but could you ask GP if it can be given any younger?

VintageThoughts · 04/05/2023 07:16

Sorry your DD is going through this OP, it's such a horrible pain.

I had interstitial cystitis for years along with many many UTIs.

I would advise caution with the cranberry juice. It's supposed to act as a preventative measure but once the bladder is inflamed and sore, it's highly acidic. And the dilute version is also very high in sugar.

My urologist told me to imagine my bladder was like a cut on my arm that was open and sore. What would you rather pour over it - acidic fruit juice or water? I drank a lot of water after that!

Cranberry juice is supposed to line the bladder and prevent bacteria from sticking to it. Once the infection has taken hold, it's too late. D-mannose powders and tablets work the same way.

Only other thing I can offer is that when I had a UTI, the pain was during or immediately after weeing. Interstitial Cystitis pain came a few minutes afterwards and was always worse when I was dehydrated.

I wish you both lots of luck - it does sound to me like you need 'meatier' antibiotics. Trimethoprim stopped working quite quickly for me. Nitrofurantoin was a better option.

Mossandlichen678 · 04/05/2023 07:23

You’ve probably already explored this op but is your dd drinking something that makes her vulnerable to utis? I know Ribena and other fruit squashes can have digestive or other undesirable effects on ph balance?

Did the gp check out diabetes?

Lastly could it be a reaction to washing powder or other detergents in the bath for example?

CalloohCallayFrabjousDay · 04/05/2023 07:26

My dd had something similar at around the same age... GP could not find anything wrong.
Oddly enough, I had recurring UTIs at the same time too, goodness knows if that was related.
GP suggested baths only and to use Sudocrem which really did help.
The issue lasted maybe two years, and GP was at the point of making a referral and it just stopped.

Roselilly36 · 04/05/2023 07:33

I have suffered more or less constant UTI’s, I definitely would not recommend cranberry juice, that made my symptoms much worse. You need to make DD urine akaline, the cranberry juice will make it acidic and cause her more pain. You would be better off giving her Lemon Barley Water, as strong as she can bear to drink it. This was the advice of the d mannose manufacturers, it did help me, Taking D-mannose has been life changing for me, I haven’t had a UTI for a number of years now. D mannose helps UTI symptoms caused by E. coli. D mannose is a simple sugar, made from fruit, you can take it in a powder and just mix it in water, it has no taste. Or take it as tablets. I take it each night now and 🤞no more UTI symptoms. The d mannose attracts the bugs in the bladder and they stick to the d mannose and flush out as you wee. Unfortunately some bugs bury deep in the wall of the bladder and escape the antibiotics, and then of course you stop the short course and the infection returns. I would recommend trying d mannose, cheapest place to buy is amazon. I hope your DD is better soon, poor little thing, it is so painful.

Original poster

Kay1111 · 04/05/2023 10:34

DeathMetalMum · 04/05/2023 06:57

I'd probably re-visit GP and ask for another alternative antibiotic. Short courses don't always clear up the infection and can sometimes need to be extended. Amoxicillin also is only reccomend following a positive culture for UTI. So good information here (about half way down) https://bnfc.nice.org.uk/treatment-summaries/urinary-tract-infections/

Thank you for that, it’s interesting. I had to fight to get another prescription after the first one didn’t solve it, I don’t think the doctors will give me a third one but I will certainly ask a urologist when we see them

OP posts:

Original poster

Kay1111 · 04/05/2023 10:35

Mumsnut · 04/05/2023 06:46

I would apply sudocrem in between wees. This helps my menopausal self not to go so often - less burning = less
sensitivity = less
feeling like I need to go

I did try that, but I think the pain is inside, so cream just isn’t doing anything sadly

OP posts:

Original poster

Kay1111 · 04/05/2023 10:35

hilbil21 · 04/05/2023 07:14

I've suffered from UTIs my entire life and have recently been recommended to try Hiprex by a urology consultant which seems to really be helping. It seems to be for 6 and over when I've googled, but could you ask GP if it can be given any younger?

Good idea thanks, I’ll ask about that

OP posts:

Original poster

Kay1111 · 04/05/2023 10:40

I have heard of IC as I had a funny bladder for a while which went away after an op for endo. My instincts are telling me it’s not IC for my daughter though, she just doesn’t seem to have the right symptoms.

I forgot to say she is taking children’s d mannose, 2 tablets 3 times a day. I don’t see any difference expect making her do big farts lol!

Thank you for your help and suggestions

OP posts:

Original poster

Kay1111 · 04/05/2023 10:42

Mossandlichen678 · 04/05/2023 07:23

You’ve probably already explored this op but is your dd drinking something that makes her vulnerable to utis? I know Ribena and other fruit squashes can have digestive or other undesirable effects on ph balance?

Did the gp check out diabetes?

Lastly could it be a reaction to washing powder or other detergents in the bath for example?

I wondered about what she’s drinking too, It’s mainly water though and a bit of weak orange squash, I think it’s really unlikely that it’s that sadly

Diabetes checked for and no change in toilet paper or washing detergents

OP posts:

Original poster

Kay1111 · 04/05/2023 10:44

CalloohCallayFrabjousDay · 04/05/2023 07:26

My dd had something similar at around the same age... GP could not find anything wrong.
Oddly enough, I had recurring UTIs at the same time too, goodness knows if that was related.
GP suggested baths only and to use Sudocrem which really did help.
The issue lasted maybe two years, and GP was at the point of making a referral and it just stopped.

I’m glad to hear your daughter grew out of it

We’ve tried creams but sadly doesn’t help, it’s an inside pain she tells me

OP posts:

KnickerlessParsons · 04/05/2023 10:44

My DD had similar, around the same age - it seems to be common in girls of that age.
Like your DD's situation, the medical people couldn't find anything wrong and DD eventually grew out of it.

What did help was weeing in the bath so that the wee is immediately diluted.

Original poster

Kay1111 · 04/05/2023 10:45

Roselilly36 · 04/05/2023 07:33

I have suffered more or less constant UTI’s, I definitely would not recommend cranberry juice, that made my symptoms much worse. You need to make DD urine akaline, the cranberry juice will make it acidic and cause her more pain. You would be better off giving her Lemon Barley Water, as strong as she can bear to drink it. This was the advice of the d mannose manufacturers, it did help me, Taking D-mannose has been life changing for me, I haven’t had a UTI for a number of years now. D mannose helps UTI symptoms caused by E. coli. D mannose is a simple sugar, made from fruit, you can take it in a powder and just mix it in water, it has no taste. Or take it as tablets. I take it each night now and 🤞no more UTI symptoms. The d mannose attracts the bugs in the bladder and they stick to the d mannose and flush out as you wee. Unfortunately some bugs bury deep in the wall of the bladder and escape the antibiotics, and then of course you stop the short course and the infection returns. I would recommend trying d mannose, cheapest place to buy is amazon. I hope your DD is better soon, poor little thing, it is so painful.

Thank you, I forgot to say she’s taking d mannose 2 tablets 3 times a day

I bought her some lemon barley squash last night as a I remembered my Nan drinking that for UTI, she didn’t love it but also didn’t refuse to drink it!

OP posts:

Appleblum · 04/05/2023 10:48

My daughter had this when she was around 5 years old. All the UTI symptoms and constant urge to pee. She was waking up 5x or more every night and so miserable.

We did multiple tests for UTI, urine calcification etc and they all came back negative. Also had ultrasound to rule out issues with her bladder and kidneys. After all these were eliminated the consultant diagnosed her with Irritable Bowel Syndrome and prescribed oxybutinin to relax her bladder to reduce the sensation of needing to pee. The constant contraction of the bladder also caused her pain and the medication helped.

We were told that there's no 'cure' for this and we had to manage the symptoms with medication until her body worked itself out. Consultant was very reassuring and said that most of the children he saw recovered within a year. DD recovered about 6 months later.

I can't pinpoint what brought it on, but consultant has suggested that this sometimes happens to children after a bout of illness or a uti. I hope your child has a speedy recovery!