Giggle incontinence advice for a desperate mum!

[PurpleUnicorn88]

Hi I'm new here, I am wondering if there is anyone with any advice on giggle incontinence? My 10 year old son was diagnosed 5 years ago, he pretty much self potty trained at 2 and was dry day and night within 2 weeks. Then at 4 years old he started to lose control of his bladder when he would laugh. This has got progressively worse as time went on. He has had ultrasounds and 4d scans etc, he was on oxybutinin which gave him horrible side effects and then tolterodine which didnt improve the condition. He is now trying oxybutinin again to see if anything will be different this time around. We also do pelvic floor exercises, drinking 2 litres of water a day, using the toilet regularly, double voiding, avoiding food and drinks that are 'bladder irritants'. We are having difficulties as he's getting older as he is more conscious of it and other children notice it as it is a full bladder empty, not just a leak, so he has had a few comments made by other children. He has given up all his extra curricular activities because of it, he will not go to other children's birthday parties, he doesn't want to socialise with other children, he just wants to stay home. Which is heartbreaking as he used to be so outgoing and sociable. The consultant he is under keeps telling me he will grow out of it, but from research this usually is around the age of 15/16. My concern is what effect this will have on his mental health. He will be due to start secondary school next year, I honestly can't see him attending if this issue is still ongoing. It'll be like sending him into the lions den. We have an appointment in 2 weeks time with a specialist in giggle incontinence to see if perhaps there is something available privately that is not currently offered on NHS, but wanted to see if anyone else has been through, or currently going through similar? Also, any recommendations on protection products we could try in the meantime?

[Laundrymaid]

Hi PurpleUnicorn88, thank you for your post. My daughter does not have Giggle Incontinence but since I have been on this forum now for a number of years I do recall that a few posts have popped up. Have you done a search on this page for it? Muffin14 and Sammytown have posted previously. I totally 'get' what you say about your son being older now and more aware of his situation and how others may react. It is something my daughter and lots of the older kids on here struggle with too. Make sure that you stress to your doctors just how much this is impacting your child and their childhood. One thing that that I have tried to stress to my daughter over the years is that "this is something that is happening to her right now, it is not who she is - it does not define her!"

Best of luck to you and your son.

The Laundrymaidxx

[HL10]

Hi, my son is 13 and has this. It causes me such worry constantly as I am so afraid his friends will notice. I hate to admit it but I have become over the years we’re I hate to hear my own child laugh. It’s an awful condition to manage and live with I totally understand your worries. We were referred to a nephrologist who prescribed Ritalin which I realise isn’t something that parents necessarily want their kids to take but we are desperate and it does have positive results in some kids. It was a bit of a faff as is a controlled drug but did however have some positive results with lesser instances and perhaps is worth a shot for you. My son had 6 months last year completely free of the problem and it was fantastic. Unfortunately however in Oct of last year he had a resurgence of the condition and despite our consultants reluctance I have managed to get him referred to try biofeedback this time too which again has had positive results in some cases. I am just not prepared to give up on this without fighting for and trying everything we can. If things don’t work what have we lost? I worry so much that if friends start to notice this may become a mental health issue with worry and strain on him so am determined to get everything I can for him to try. I pray he does grow out of it but don’t want to wish his life away. It’s an awful condition to have and I know exactly your worries. I will let you know what happens when we start this biofeedback but just thought I would post on here incase Ritalin and or biofeedback are something you could also try for your son. I really hope things improve for you, I wouldn’t wish this on anyone but try not to lose hope x

[PurpleUnicorn88 in reply to HL10]

Hi, thank you for your response, apologies it has taken so long for me to respond, I have just received the email notification.

Since posting this I did pay to take my son to a private consultant to see if there were any alternative options. While the news that were no alternative treatments available was disappointing, they did tell me that the dose of oxybutinin he was on was very low (5mg) when he can go up to 15mg. So they suggested upping the dosage to 10mg for now. Since then, there has been significant improvement. He now doesn't wear pads which is a massive step and rather than daily wetting (he is a giggler) we are perhaps having monthly, if that, accidents.

I totally understand what you mean about hating hearing the sound of laughter, purely because you know what follows that and that their moment of joy then causes them heartache when they wet.

Thank you so much for your suggestions, they are definitely something to keep in mind if we find ourselves going backwards xx

[Rachelswims in reply to PurpleUnicorn88]

Hi there, this is a bit of a long shot given you wrote this post 3 years ago, but if you happen to be on here or see this, I would be interested to know how your son is getting on and how you found bio-feedback. My son has giggle incontinence, he was diagnosed 2 years ago, he is now 7 and under a specialist in London. He was prescribed oxybutynin 5mg to begin with which at first seemed to be working but became less effective over time so the dose was upped to 10mg and he started having less accidents but again it seems to have lost effect and he has been having a lot of accidents recently including one in class last week. We have been told Ritalin is the only other medication that can help but have been slightly reluctant to try this as my son is also showing signs of the ocd and have heard this can worsen symptoms. I am feeling really desperate and really worried about his future and mental health. I just can’t believe the randomness of this condition and how cruel it is. Also due to the fact it is so often misdiagnosed and so rare - it is so hard to find any information on it! I would also be grateful to know what pads worked the best for you too. Any advice would be gratefully received! Thank you! X