Overactive bladder 7 years old son

[Meravigliosapaura]

Hi everyone.. I feel so desperate about my son who is been suffering from overactive bladder his whole life..we tried everything but with little success... We tried times voiding, vibrating watch, punishment, encouragement, gifts, ignoring the problem, neuropsychiatry, psychologist and even medical treatment with Oxybutynin... But each time I look at him he is squatting in order to face his urgent need to void and he also needs to go frequently. It is a totally heartbreaking situation. Who can help me? Doctors tell me he will grow out of it but I am not convinced at all! 😢

[fuzzalert]

Morning

Please don’t give up! You have done everything you can as a parent, stick with it and do what the rest of us do and vent on here!!!

Sounds like you’re me but two years ago! My son is 9 with daytime wetting. He used to go up to 20 times a day and I remember when he first did 50ml wee was like a miracle!! He’s halved the frequency now and even did a 200ml wee which is beyond AMAZING. I’ve taken photos of every chart he’s done (before handing over to medical staff) so that I can look back and see the changes for myself. It is SO disheartening to see your child go through this but around a year ago our family had reached breaking point so we had another chat and asked him what would he like to happen, what would make his life easier. Jist of it was that he was scared to tell me he’d had an accident for fear of being told off, he decided (inthe psychology sessions) that he’d like to confide in a school friend who could help him at school!

We don’t draw attention to it at all anymore, completely taken the pressure off him now, all I’ve asked is that he just chucks his wet clothes in the Landry basket and we don’t mention what’s happened. He’s a lot happier now, yes he still has accidents as the urgency is still there! He’s been on oxybutinin, then tolterdine, now on double dose of vesicare and has two sessions of PTNS

Sounds like you’re at the crossroads we’ve been at, there are still other medicine options for him and perhaps a private phone call to your urology doctor to ask what’s next and if there are alternative options to Tolterodine, because I believe that’s the next step on NICE guidelines

Don’t give up, but do have a chat with your child, even though they’re probably fed up of talking about it, make it a chat with decisions about what they want. That was the big one for my son, he just wants to be “normal” like other kids and doesn’t want to talk about it anymore

Hope that’s of some use to you, even if you just feel better for venting :o)

[Meravigliosapaura in reply to fuzzalert]

Hi fuzzalert fuzzalert thanks soooo much for your kind reply. I am really touched. Sounds like your son is the same as mine. Matthias does not want to talk about his problem anymore. He is now at an age at which he is ashamed his friends could notice his problem. May I ask you if your son shows any physical sign of his URGENCY? (mine generally squats or grabs his penis). And besides this, were you told he will grow out of it or will it be a lifelong problem to deal with? My son was generally dry at night... But lately has problem with night continence too 😔

[fuzzalert in reply to Meravigliosapaura]

He gets the wee message at the very last second. At one point the consultant asked him to have a go at holding it. He tried that for a day but was too distressing. He just can’t hold it. When he wants to go he does try to hold it but he holds his breath, goes bright red and it just comes flying out!!!

My son was generally ok at night. Late out of nappies, just before he started school.

Constipation has never been an issue until we saw a different urologist as he was having soiling issues a few years ago, he was sent for an X-ray and surprisingly he whole colon was blocked! So he’s been through the joys of disimpaction and movicol too! I wa sleep for them not to blame his bowels forhis issues as this could’ve been a side effect of the bladder meds but defo worth requestingthat be investigated!

Yes we were told he would grow out of it and I honestly believe his output volumes have increased and frequency is defo less too but until he has Urodynamics test medical people finally witnessed his instant urgency

[Hidden]

Do any of your children .... NOT stop what they are doing to go to toilet ? Or when they do go .... go SO SO quick they havent fully emptied ?

Ourson turned 8 last month and does this and we just cannot get "proper help"

[Meravigliosapaura in reply to Hidden]

My son goes frequently... I often tell him to double void (he counts to 10 and tries again) but he can wet even if he has done this a few minutes before. The ultrasounds and uroflowmetry showed he empties entirely his bladder (minimum post void residual, about 14 ml)... The problem is my son is that his bladder does not manage to fill entirely and squeeze suddenly as it reaches about 120 ml of wee

[Hidden in reply to Meravigliosapaura]

Yes we have tried that.

And ultrasound was perfect

[Meravigliosapaura in reply to Hidden]

I am scared about urodynamics...i think this will be the next step.

I was just wondering if there are some parents whose children REALLY grew out of the problem, because I did not find any 😢

[Hidden in reply to Meravigliosapaura]

Our son was mauled by a dog badly and since then has major toilet anxiety and pysc has said it will get better in time ... but we dont think so or belive it

[ClarabellaSimpkins]

I could have written that only about my daughter. All I can say is that you are not alone. I too cannot imagine her growing out of the problems that she is facing right now but doctors keep saying she will. Some days I get so down about it all but have to stay strong for my daughter. It is a hard thing to live with, you never get a day off from it... But we are not alone and that has to count for something.

[Meravigliosapaura in reply to ClarabellaSimpkins]

I don't know if this information may help or not... When I am down about the whole situation (at least once a day) I try to think to the words a famous urologist here in Italy told me. Her name is Dr. Zerqueni. She dedicated her whole life treating bladder issues in children. She was the 1st to do research about this problem. She has a 40 years experience during which she treated thousands of children and she told me that she then decided to leave her job because other medical people did not agree with her. She reassured me saying that experience showed that this problem goes away naturally in 99% of affected children but there is no way to know when. It can be at 7 years old to 12 or 1r years old but the outcome is always the same: children grow out of it with time. She is contrary to the use of medicine and promotes behavioral therapy and patience. She also told me : don't be sad about it. Don t think your son is ill, because he is not. Overactive bladder is not an illness, but it is just part of the "growing up" process. Every child has her own times. And for the bladder is the same...frequency, urgency and urge incontinence mean the brain /bladder Communication is not developed yet, but it certainly will. The other 1% of children not growing out of it is due to major diseases such as spina bifida or celebral palsy. I try to repeat myself, looking at this forum: the affected children are a lot, it cannot be that they are all ill! It cannot be!!!

[Helen36]

Hello - I just wanted to reply and say hello as another overactive bladder family. I’d echo everything that’s been said above. Unfortunately I’ve drawn the sorry conclusion this is about managing the condition as best we can, taking the stress out of as much as possible, and just arming myself with as much information as possible. My little one is a girl and only 5 so different to you, but a bowel scan showed us an enlarged bowel pressing on the bladder making it overactive (from historical constipation) that we are trying to shrink with laxatives. Not much fun as that seems to cause soiling too. I’ve found a really good toilet routine with ‘sits’ to try for a poo after breakfast and dinner really help, but I am sure you have been told that it it’s relevant. She also grabs herself before she wets, or squats but she tells me that’s to try and stop it coming, but I think it already has, if that makes sense. She says if she runs to loo more would come out.

A really strict drinking routine has also helped us. She has 200ml if water or milk breakfast, snack, lunch, snack and dinner and I try not to let her sip in between. This has given her bladder more predictability with filling and emptying which seems to have helped a bit. I’ve also found that what she drinks makes a huge difference. We cut back to just water and milk for a few days and introduced various things to test. Squash (of any kind) is a no, as is fruit juice that is from concentrate. I’ve seen some people say hot chocolate too but not us. I let her have apple juice (not from concentrate) as a treat and that seems to have helped. But all this is just about reducing the number of accident for us, not about actually getting dry.

If I feel myself getting cross with her (which I do, when I have just asked her to go and she doesn’t, and then has an accident!) I just walk out the room and try really hard not to show it. I’ve really encouraged her to change herself and I’m now asking her to check whether she’s wet as well as I think she genuinely doesn’t know. We talk about her ‘naughty bladder’ to try and depersonalise it and every time she has an accident I reassure her that I am not cross with her. I feel like there is so much i don’t have any control over with this sorry condition, but patience, kindness and understanding I can do. (Well... 99% if the time anyway!) We also say ‘it’s toilet time’ not ‘please can you go to the loo’ as that seems to get a better response!

Have you seen the posts on here about chiropractors? Definitely worth investigating if you have any appetite for alternative therapies.

In terms of your question about will they grow out of it... I don’t know. I think it very much depends on the underlying cause. Ours is linked to the bowel so I live in hope that as the bowel grows we may see a change. I once found some stats on overactive bladders in children (there is no corner of the internet I have not been on this topic!) and it did show a steady decline over time (about 7% per year from the age of 5 if I remember correctly). And remember, people not dealing with this issue now won’t be on this forum any more to give us their good news - probably out of fear of jinxing it!

Chin up and keep using this forum. I would be lost without it. Whatever doctors suggest next someone else will have been through and can help take some of the fear out of it xx

[Meravigliosapaura]

I don't know if this information may help or not... When I am down about the whole situation (at least once a day) I try to think to the words a famous urologist here in Italy told me. Her name is Dr. Zerqueni. She dedicated her whole life treating bladder issues in children. She was the 1st to do research about this problem. She has a 40 years experience during which she treated thousands of children and she told me that she then decided to leave her job because other medical people did not agree with her. She reassured me saying that experience showed that this problem goes away naturally in 99% of affected children but there is no way to know when. It can be at 7 years old as well as 12 or 13 years old but the outcome is always the same: children grow out of it with time. She is against the use of too much medical therapy in children and promotes rather behavioral therapy and patience. She also told me : don't be sad about it. Don t think your son is ill, because he is not. Overactive bladder is not an illness, but it is just part of the "growing up" process. Every child has her own times. And for the bladder is the same...frequency, urgency and urge incontinence mean the brain /bladder Communication is not developed yet, but it certainly will. The other 1% of children not growing out of it is due to major diseases such as spina bifida or celebral palsy. I try to repeat myself, looking at this forum: the affected children are a lot, it cannot be that they are all ill! It cannot be!!!