Finally had our first appointment with specialist!!

[Chocolate-chicken]

Sorry for the essay, but I know it can sometimes help to read about other people's experiences, so here's our story so far...

I have a 5 year old daughter who has never been potty trained. We have been having multiple wee accidents every single day since she came out of nappies 2 years ago. She started school in September and stared soiling herself soon after that too. After being fobbed off countless times by drs, we were finally referred to the continence team in June last year - after a torturous 9 month wait we finally had the appointment yesterday!!

The appointment went well... They didn't mention sodding reward charts, thank god, as I was worried my husband may need to restrain me if they had! However, they have said that she is probably constipated... Which threw me somewhat as I've read on here about children being constipated and always assumed this wasn't our problem as she was pooing (often explosively and pretty loose) most days... However, it seems that the explosiveness and loose consistency is a sign of constipation (I had assumed it was just hard poos that signified this), so we are now waiting for the prescription of the magical movicol, and are all set for a disimpaction over the Easter holiday (fun fun times ahead...)

It was such a relief to have people take us seriously finally, but equally incredibly frustrating that we've had to wait so so so long to be given any advice at all (well, advice that didn't involve making a reward chart that is!!!).... There were so many emotions I ended up crying, but not as much as I had thought I might do so it wasn't too bad, plus they said that most mums they see end up crying... (If other people are also going through 3 or 4 sets of clothes a day, having 2 or 3 notes from school a week to say their child has pooed themselves in class, having their child lie to them on an hourly basis about wet/soiled pants... etc...... then I'm not surprised so many people cry!!)

Anyway, I believe the plan is to do a disimpaction, then stay on movicol for 6 months, and see if there is any improvement. Currently her bladder capacity appears to be around 40-50mls so there is clearly quite a bit of work to do....

One major positive though is that I said I was really struggling getting her to have a drink and they have suggested (homemade) ice lollies!!! How genius is that!!???!!

Anyway, onwards and... Upwards...?? Surely that is the only direction?????????????

[EHM39]

So pleased to hear this!! Lovely to read you have had progress and that there appears to be a good reason behind your child’s problems. I think just being able to know why this is happening is a huge relief - like you 2 years of being fobbed off and just not knowing does take its toll! Well done for getting through what sounds like an emotional appointment (we had our first appointment too recently, just me and my 4yr old son, and I was an absolute blubbering mess! I think I was overwhelmed someone was finally listening). Good luck with the movicol and hang on in there. There will be an end - it is just a matter of when! 😀 xx

[Helen36]

Such good news!!! I had to pull over driving back from our first appointment to sob my heart out. I had every moment I had ever been cross with her running through my mind only to have someone say this is completely not her fault.... I felt awful but was also so relieved to have someone say something other than a reward chart!!

Our wetting & soiling was also put down to constipation and getting that under control has helped so much. It does take a long time to get it right though so be prepared for the long haul. Our bowel was so compressed against the bladder we think it started the overactive bladder we have since also been diagnosed with. We have found drinking makes such a difference too. There is definitely a common theme amongst all of us that our kids don’t want to drink!!! We had a little girl round for a play date yesterday she just drank her drink and asked for another - never seen my daughter do that!!! Ice lollies are a good idea, I will definitely be doing that!! We also have a ‘naughty drinks fairy’ that I talk to and say ‘don’t drink Evelyn’s drink’ and then turn my back.... and it goes. Good luck and keep us posted. X

[AliStan]

Thanks for sharing...and best of luck at Easter. Hopefully the next tears will be ones of joy but I totally get why you were emotional. I too broke down the first time someone professional finally told me I wasn't going mad, there was something actually wrong and crucially they were going to help. It was the start of a longer journey but such a weight lifted to have someone to share the rollercoaster ride with us.