15 year old son with giggle incontinence. Desperate to find a Dr to help as its affecting his mental health.

[Muffin14]

Hi I'm new to this forum. My 15 year old son has been told he has giggle incontinence and we have gone round and round in circles with GP, continence team and urologists but have got nowhere. We have now found out he's been lost in the NHS system and we have to start again. Next appointment is a few months away and my son is desperate for help. He wet himself in front of his class yesterday and was mortified. He's becoming withdrawn and u dear confident.If there is a consultant we could try either nhs or private I would be so grateful to have recommendations. We are based in Wiltshire. Thank you

[halftime]

Hi Muffin14. If you have an appointment with a consultants name, phone the hospital and ask to be put through to that consultant's PA. Have a chat with the PA; explain how you were lost in the system and have been dumped outside to start from the beginning again and ask if they have an earlier appointment they could fit you in to. Phone every week if need be. Cancellations do happen and P.A.s are incredibly helpful, I have always found.

I don't really know anything about giggle incontinence, so I don't feel I have anything useful to offer there. However, my 14 year old son has nocturnal enuresis; lately this has occasionally happened when he has come in from school and had a nap on the bed. This really worried him, so on trips now he uses incontinence pads (the better ones for men are pretty thin) in case he falls asleep and has an accident. His friends are none the wiser. Be pushy. Good luck.

[MrsSquirrel in reply to halftime]

Sorry to hear that Muffin, nothing to add only that I hope you manage to get seen and get some answers and help. Halftime - what pads do you use? We are looking for some discreet ones to go with some ERIC pants for our son (daytime wetting pads, we use pullups at night) who is 9.

Thanks x

[halftime in reply to MrsSquirrel]

Hi MrsSquirrel. My son has nocturnal enuresis. Long trips by coach or plane cause him anxiety in case he falls asleep and has a wetting accident. His max bladder capacity is 400ml; a 9 year old would obviously be considerably less. My son has used Men's Tena Level 2 pads. (Full adult incontinence pads were too bulky to be discreet). We gave these a dry run (wet run) before use to test and found these reliable up to 250ml fluid capacity, so clearly they would not rescue him from a completely full bladder voiding. He has only had one occasion when he needed the pad and it did it's job, giving him time to wake up before he had a full wetting incident. I hope this helps.

[MrsSquirrel in reply to halftime]

Thanks, I bought a couple of different types at Waitrose last wee so we can do a dry run too - our son just passes small amounts so about 40 mls per wet. Pad may help him in classroom situation.

[eloise04]

Hi muffin14 I’m so sorry to hear this and I know exactly what you and your son are going through. My 14 year old daughter also has giggle incontinence and we have spent years trying to sort it out and finally we have!. Firstly, I would really recommend that you get referred to Anne Wright at Evelina Childrens hospital. She discovered that, in fact, my daughter had not only giggle incontinence but a v large bladder, overactive bladder and high pressure and no signals. We had a lot of urodynamics done and a upp and got medicine to stop all the problems except the GI, then she had more tests and we found out that the giggle incontinence actually comes from her brain signals not her physical bladder. So now she has specific medicines used together which apparently hasn’t been done before but it works! and for her luckily, no side effects. This was revolutionary for us as Giggle incont it is so awful and it was happening at school, with friends on the bus home, when she went out etc. and I didn’t want her to get to the point where she didn’t want to laugh. But now she is absolutely fine. Let me know if you would like more info and I’ll email you.

[newmother in reply to eloise04]

hi this is some years past but if you can give any more information on this I would really appreciate it. My son is 10 years old and we haven’t really got anywhere with his giggle incontinence on the NHS in Brighton so thinking of going private to the Evelina…