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Bladder incontinence in teen boy

Posted , 3 users are following.

nicola46900
nicola46900

Hi, I'm new to this group and looking for help and advice.

My son has had complete bladder incontinence for 5 years now and he is nearly 14 years old. The start of this condition is unexplained. From urodynamics, it is proventhat he has overactive bladder and poor voiding, however medication offered such has desmopressin, solifenicin, betmega, oxybutynin have not helped his symptoms.

He has had botox twice and PTNS treatment, but with no success. He has had MRI and brain scans, hormone testing with no remarkable findings. We have just such started acupuncture privately as NHS will not support this. The hospital seems to have nothing more to offer and I am absolutely desperate for him.

?Does anyone have any experiences or advice which they can share with me?

?Also does anyone know how to get a referral to Great Ormond Street as we have been through East Lancs hospital, Manchester Children's hospital and Alder Hey in Liverpool and we are not finding a successful treatment plan for him.

Thank you in advance.

0 likes, 7 replies

7 Replies

  • stevewet
    stevewet nicola46900

    Posted

    Hi Nicola, I feel for you and your son and know what you must be going through. Growing up I had an extremely weak bladder and was a nightly bedwetter until my early 20's I thought by now the NHS would be better equipped to deal with this. Back when I was growing my folks were always fobbed off with "Oh he'll grow out of it in his own time" I did but really that just wasn't good enough. Surely there must be a diagnosis for your son's complete incontinence. My current problems are caused by diabetic neuropathy. I take it Diabetes has been ruled out. I wish you every luck and hope you can find a cure for your son. 

    • nicola46900
      nicola46900 stevewet

      Posted

      Hi, thanks for your comments. We have also been told ‘he will grow out of it’ as well but he is nearly 14 and well into pubity. It feels like we are being fobbed off as well. He has had a water depreviation test twice which considers kidney functioning and diabetes insipidious. Twice I have been told the results are biologically impossible and hospital refuses to carry out this test again so we are stuck. I can really sympathise with you as we have been living like this for 5 and half year now. 
  • Ginny31
    Ginny31 nicola46900

    Posted

    Hi Nicola. I’m sorry I can’t suggest a solution to your son’s incontinence but can empathise. I have had bladder incontinence since my teens and before then had frequent bladder and bowel accidents. I did not tell anyone for a long time. When I asked for help from GPs in my late teens and early 20s I found they did not realise how heavy it was and how much it affected me day to day. Eventually I did get a referral and investigations and was started on oxybutinin which has helped somewhat. Things are more complicated now as my incontinence is made worse by a connective tissue disorder (not diagnosed til recently) and fibromyalgia and other health conditions.

    I am sorry that oxybutinin has not helped your son.

    I don’t know what other treatments there are beyond what you’ve mentioned. If there is anything regarding how to manage with incontinence that I could share that would be helpful, please do ask.

    It must be a great help to your son that you are supporting him and sympathetic. Having that empathy would have helped me as a child.

  • nicola46900
    nicola46900

    Posted

    Thank you for taking the time to reply. We manage in the daytime with pull up tena pants but overnight is horrendous as we do not have a product that holds the urine. I do not think the medical professionals comprehend how bad night times are for us. My son has not yet tried oxybutyin slow release patches so I can going to ask for these next. I’m sorry to hear about your other health issues x
    • stevewet
      stevewet nicola46900

      Posted

      Hi Nicola, for night time use try Tena Maxi slips or Alvita All In Ones They work well for me and I wet heavily through the night.
    • Ginny31
      Ginny31 nicola46900

      Posted

      Hi Nicola. I’m sorry to hear about nighttime problems and that the doctors don’t understand how bad it is. I often think the impact of incontinence isn’t recognised. Probably never is fully understood until you or a loved one have suffered with it but it’s upsetting they aren’t more helpful.

      I find that the only products that work when I know I’ll wet heavily and not change for some time - so as your son at night - are taped pads (often called all in ones or slips). I know the nappy/diaper style may be off putting to him and that’s a personal thing so I understand this may not be what you and your son want to try. For me I no longer mind using them as the security and absorbency is more important in many situations.

      I find the Tena Slip Ultima is very absorbent. I regularly use the Attends Slip Regular 9. (Must be the Slip Regular, some of the other Slips are very plastic and crinkly. ) It is very thin (thinner than the Tena) so I was dubious at first but it works very well for me.

      It just occurs to me, these are adults’ products. Depending your son’s build, I’m not sure if these are the suitable size or if teen/junior products would fit better? Some manufacturers make them (possibly Abena, I would have to check).  If pads are too loose, leakage at the leg barriers is more likely.

      I hope that might help. If taped products are a no, I can let you know about pads I find work too.

  • stevewet
    stevewet nicola46900

    Posted

    When I became incontinent neither the Doctor nor my urologist ever discussed how I was going to manage this. My wife who works in the care sector suggested I get refered to the NHS Continence servie. They were very understanding and helped a lot. I get various pads and slips plus barrier cream et to help me manage my day and night problems. Bak when I was growing up I was refered to a nurse and my mother got help with nappies for night time use and a plastic fitted over for my bed.
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