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Help needed please - 14 year old son with bladder incontinence

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.

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Hi and welcome to our sorry band! My daughter has overactive bladder too but no issue with voiding so some similarities but not all. She was on Oxybutynin but that didn't work for her, now on Tolterodine combined with TENS machine which seems to be helping. I have done quite a few posts on both elements so they might give you more info but if you have any questions I'm more than happy to share.

She's under the care of the Evelina childrens hospital which has a specialist bowel and bladder clinic and so far I've been really impressed. That might be another option for you to consider if you're looking at London hospitals but don't know how you'd get referral, sorry, maybe give them a call to find out?

Best of luck

x

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Thank you for you reply. We are in the North West if England so it is a long way away. I think the medical team may need to retry medication as some types he hasn’t had since he was 8/9 years old and I have been told that his body and tolerances may change through puberty.

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Hi Nicolar1975, I hear that Evelina, London are doing some good things with OAB with TENS, and assume you have contacted ERIC for some local contacts?? However, locally for you, have you tried June Rogers (Manchester I think) - she is a leading Specialist in Paed Continence issues and lectures worldwide. You could also try Julia Herbert, (somewhere in Lancashire), she is a Womens Health Physio but has a lot of success across all ages, keeps up to date with new technologies and research and lectures across the UK and overseas, she is very forward thinking and doesn't give up easily - and she knows a lot of people. They will both probably get bombarded now, but that's what they are there for. Don't give up. Hope this helps.

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Also meant to say, the NHS these days means that you can go anywhere for your treatment, you don't have to stay with your local hospital. Many depts you can self refer, especially continence issues - so give them a call and find out (easier said than done). Some private clinics have NHS contracts, so you can possibly get referrals to specialist centres on the NHS. Always worth an ask - but easy to get lost in the system, so best to call them directly. The squeeky wheel gets oiled !! be the squeeky wheel.

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Thank you for this info. I have been reading on Eric website but I have not spoken to an advisor directly. We have tried so many things and are struggling so perhaps it is time to call and speak to an advisor to make sure we are not missing anything. My GP says specialist consultant can only make referrals to GOSH. The urology specialist has mentioned hypnotherapy but this can not be funded by NHS

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Not sure if it will help but I have read on here that a few people have had positive results form seeing a chiropractor. Again this is not supported by the NHS so do some reading up. I would ask your GP about referral to Great Ormond Street or ask them direct how to get a referral.

Really hope you get some help soon.

x

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Hi we are currently trying the acupuncture route and paying for this privately. Haven’t considered a chiropractor as I don’t really know what they do. I will do a little research on this. Thank you

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No problem. There are also cd's you can get that might be worth looking at, based around a hypnosis method, mainly for night time but you never know.

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Hi

Someone like us !

My son is 10 - we have had the drugs and no change. We have had a mri but nothing remarkable. Offered lumber puncture and geome project but not taken this up yet as not sure if it will help but probably will as what else can we do. We haven’t been offered anything else and the door is continuously being slammed in my face.

We have not been offered Botox.

My son has low muscle tone but that’s the only other thing they have found so far.

It’s an absolute nightmare to deal with on so many levels .

It would be great to hear more about how you get on

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I feel exactly as you do. We only want to find a solution to help our children. I feel the medical team are stuff and have given up. We have even had doubt cast over us as parents as they can resolve his condition. Just Looking for excuses. What is a lumber puncture and geome project? Unfortunately my son had Botox twice and he had no benefit which is a shame as we were so hopefully that this could have helped. I would suggest anything is worth a try. We feel stuck at the moment

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My son manages by restricting food and drink which I was also made to feel my parenting skills weren’t the best! I am tearing my hair out and feel I am on my own with this taboo problem.

My son has never really achieved toilet training, he has very poor motor skills and poor muscle tone. However, he looks much like a regular lad and he manages these well.

After mri suggested we could join the genome 100,000 project- we were told :

The role of genetics is in identifying whether there is a chromosomal abnormality or to be more specific "a gene abnormality" contributing to his problems. The usefulness is in arriving at a diagnosis, to have a more informed view of the prognosis and of course implications for future generations. A genetic diagnosis other than the aforementioned reasons, will not be of help short term.

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Are there any similarities??

Can I ask what the bladder nurse has done ?? All mine do is try and change the meds each time. No advice how to manage, no support, no refer on ..

thanks

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My son has had urodynamics down which shows he has overactive bladder, poor voiding (slow wee stream) but then on ultrasound after going to toilet, not completely emptying and leaving wee behind in his bladder.

The meds and Botox should treat overactive bladder but nothing is working for us.

Nurse has given us some exercises but he struggles to isolate his pelvic floor. We have not had an intensive physio. Tried biofeedback twice but was not continued.

He has had PTNS treatment with the bladder nurse which is a nerve stimulation treatment. 30 mins per week for 12 weeks, still no improvement.

The hormone testing was carried out by the endocrine department to make sure that the bladder problems were not a side effect of a hormone inblance. However this was within normal limits.

So we are really stuck :( my son had full bladder control from age 2 when he was potty trained until his was 8 and the leaking started following chronic constipation. I feel sorry for you as it makes life so far for parents who just want the best for their children :(

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Can I ask what the hormone testing is please

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My 8 year old has overactive bladder (daytime wetting) and he's now on last option for medication called Vesicare

Whilst waiting to see what the next step is I spoke to a family member who is an acupuncturist and suggested my son try a Cranial Osteopath (one who is qualified to work with children and I found out one who was local to me and had been trained at the Osteopaths Centre (of excellence I think) in London near Wandsworth Contact them and see if they can recommend anyone in your area who's been trained there!

We're currently saving up to go down this route and I believe the medication isn't working for my sons urgency at all. The acupuncturist said seeing the osteopath should work and more than likely that all he It's acupuncture should fix him!!!

I have no proof of this yet but interesting to hear people talking about other options.

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Thank you for your informative reply - we have had some bladder scans done but not the voiding flow. I think I will follow that up for definite.

Did the MRI show anything?

You have done really well to have managed to do what you have done so far.

We do just want to find an answer and do the best for our children- I can’t believe it’s so hard to get help!

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Hi, it’s been tough. I’m in the 3rd hospital system now as we start with East Lancashire, then Manchester Children’s hospital and now Alder Hey Children’s hosital in Liverpool which is 120 mile round trip each time from home. However we have to keep going until we feel we have exhausted all options.

Our MRI was apparently normal but the urodynamics was done by urology. The best type of this is ambulatory over a few hours rather than lead down on a bed as it replicates more normal activity by moving around.

The nurses can measure the flow by getting the patient to wee into a special toilet which measures the speed of the flow and volume passed. Then he was scanned by ultrasound afterwards.

I hope that this is helpful. It is good to share experiences to feel reassured that you are not the only parent going through this and also to see if anyone can suggest alternative treatments to go back to the health prefoessionals to ask about. Good luck xxx

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Yes I am like you I have to keep going until I get an answer- it’s so frustrating.

Thank you for the advice on the urodynamics it’s really helpful. I am wondering why we haven’t been referred that way - I am in the southwest.

Any ideas to try are gratefully received!

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Hi

I think you should ask your GP to give you a referral for the evalina hospital in London. They are fantastic,

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Hi my GP is really unhelpful- bring towards the end of England I haven’t heard anything about Evalina hospital- can I asked how they helped. Many thanks

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My child is currently with them and has just had the video-urodynamic testing to establish the cause of her giggle incontinece. Their approach , specialising in children made a very embarrassing procedure bearable ( my daughter is 13) I knw that our situation seem slightly different but prior to the testing they had tried other drugs such as Ritalin in case it was a cataplexy type disorder.i really feel for you and your son, but know he'll be ok as he's got you. You sound very on the ball . I hope you find some answers. Our specialist is called Dr Anne Wright. The evalina is part of St Thomas Hospital in London. Wishing you well x

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Thanks for sharing this infi

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Are you under Bristol children’s hospital. I have heard that a consultant called Mr Mark Woodward who is based there is supposed to be very good.

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We did get referred to a neurologist at Bristol children’s hospital- we are stuck trying to get referred on from bladder nurses etc I keep going back to GP - we see bladder nurse about one a year and that’s we we get and it’s the same thing every time .. try a new drug . If it wasn’t for the OT stepping in after we thought he was a bit of dyspraxia we wouldn’t of got the mri . A paediatric doctor did review his case but dismissed the toilet problems and said he would probably grow out of it. I have openly wept to the bladder nurse specialist in sheer frustration how it’s adversely effecting us. Sorry if I sound a bit fed up with it - it’s like a endless circle !

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I totally feel your pain. We were offered a second opinion so the consultant at Alder Hey offered us Bristol. We said we were prepared to travel anywhere so please make the referral. The appointment never came so I followed it up. I never got an appointment but had a long conversation with Mr Woodward over the phone. Unfortunately he said there was not much more to try so wasn’t worth us travelling from North of England but he did write to my consultant so need to review the content of this letter now with him.

We are so desperate to try to get some improvement for our son that we would travel anywhere to see someone who could help him

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Have you have any access to Camhs psychology support or considered this? We are very lucky to have this service although it’s a long road we have yet to see any kind of results. We also saw a private sensory OT and that didn’t help.

I am going to keep on keeping on!!

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Thank you nicolar1975 I have got two health professionals looking into treatments that you have tried - I hope you find a way forward. I am not expecting much from this but at least it can be ruled in or out - thank you for your post it gave me a boost to carry on carrying on ! X

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That’s good news. Hope something works. Let me know how you get on.

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We finally got confirmation of urology referral has been done. I have made notes of all the things you have tried and I going to follow your lead -probably not going to hear much for a while but finally it’s a start!

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Good luck, keep in touch and let me know if I can help further x

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Thanks - if they tell me to keep a diary and send me away I might just explode on the spot ;-) Hope you get further forward soon x

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Hi, I’m 16 and have had giggle incontinence all my life; please please please help him through it and make sure he knows it’s not his fault!

I take imipramine which strengthens the muscles considerably and then the person can work on muscle exercises and stuff, and the only real side effects I experience are drowsiness every now and then and dizziness when I stand up. Sorry if you’ve tried something similar already - I don’t know it could all be sorted by now

Best of luck

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To all of you in this thread, I wasn't clear on what part of the body the MRI was done. Some of you may want to investigate the possibility of Spina bifida occulta. It is a fairly common thing for people to have. It is the mildest form of spina bifida and usually has no ill effects, in fact most people who have it don't even know that they do. Occasionally there are some issues with it. These can be poor bladder control, heaviness or weakness in the legs, and more. People who have it usually have one or more of several signs of it. This includes a small dimple in the center of the back in the small of the back, a tuft of hair, or a sinus tract (blind). While SBO is fairly common, other effects from it are rather rare, but it is worth at least checking into it.

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