Desmopressin. Speed of affectiveness and altered behaviour.

[DeeOwen]

Hi Folks and happy Easter.

We've had my son on 100mg Desmomelts for just over a week now but there has been absolutely no improvement at all on them, in fact there have been a couple of mornings it seems that it is worse. I've been trying to find out just how quick they are supposed to work as my understanding was it was should be pretty immediate.

There also seems to have been a shift in his behaviour, which has been noted by other people in the family. He's a sensitive soul anyway but he has become very weepy and also somewhat more aggressive and sulky. The leaflet says that this is a rare side effect but I wondered if anyone else has had this experience and if you stopped them straight away. He is still off school for another week and I don't really want to wait until after the bank holiday to speak with the doctor.

Any advice welcome.

[BecJ]

Desmomelts didn't work for my son. We didn't find they had any effect at all (on his wetting or his behaviour). We ended up with an alarm & that worked really well for him.

I can't speak from experience of desmomelt behaviour, but if your gut feeling is that they are having an effect then trust yourself and stop them. My sons behaviour on lactulose was horrific when he was on that. I stopped it until we could see a medical professional as it wasn't fair on any of us to keep him on it. If the desmomelts are not working for the wetting then you are gaining nothing by him taking them, we were told the effect would be fairly instant but our continence nurse did say they didn't work for everyone.

Good luck xx

[Beanieskeeper]

Hi we had our 7 year old on 240 mg desmo for about 3 weeks and his personality changed dramatically in that time, very teary and aggressive, throwing tantrums over the smallest thing. He also had a rash and very puffy face. We took him off them once we realised it was the desmo that was causing it and within a few days he was back to his chilled out self. The lower dose did nothing for him and the higher dose worked maybe 3 times a week with no idea what was making it work, so frustrating! We decided that the side effects were too much for something that didn't work very well. I spoke to our continence nurse and she said we did the right thing and filled in a yellow form about the side effects. If your not happy with the side effects then you can stop them, some kids get on really well with them and others don't x

[DeeOwen]

Thanks for the replies folks.

We've been watching him very closely today. Much less aggressive (which is tending to be saved for his sister), but still very teary and big mood swings. He's been stomping around like a herd of Elephants. The tricky thing is that our youngest has recently had chicken pox so it's hard to know if he is building up to that or if it is the Desmomelts. However, when I cast my mind back to when he tried the higher dose a few weeks ago, I seem to remember him being very, very aggressively grumpy.

I will do one more night as all the docs and school nurse service will be available for me to speak to.

It is suspected that it is a night time overactive problem but either way, I may just give the poor kid a good few months rest. He isn't 7 until September so I may leave that to concentrate on our youngest daytime wetting problems. (never ends does it??)

It really is great to have somewhere to go to moan about all this stuff.

[faem]

Hi. My son has been on 2 desmomelts each night for a month now and he is still wetting almost every night. Its difficult to know if he's any drier as he was in pull ups before. We have had a few dry nights so I presume they are working in some way. He is also now waiting for a scan to assess whether he has an overactive bladder. Regarding the mood swings...my son had a week of quite destructive behaviour which was out of character for him. We seem to have overcome that now but I think you have to weigh up the pros and cons of these meds. If they aren't doing what you want them to do then personally I'd try something else for now. We are using an alarm too but that hasn't been successful for us yet! Good luck x

[Blodwen3870 in reply to faem]

can i ask what dosage he was taking?

[MiHe]

Hi there,

My son is 9 and we've tried desmomelts for 3 weeks. I can't say if they make a difference, as my son seems to follow all the rules that came with them by the GP (no drinks 90 min before bed time, no fruits, fruit juice, 2 toilet visits before bed (with a bit of reading in between)... Also, I don't darken the room at night, it means that he wakes up very early, but at the same notices that he needs to go for a wee. So it could be down to all the 'extra' activities. As the GP said, positive thoughts help as well...

[the_loop_line]

I've just found this post via a google search, my 7yo dd has been taking Desmopressin for around 1 month, and although it's been incredibly effective for bed wetting, we've noticed a significant change in her mood - tantrums, tears, lashing out - which is SO unlike her, normally she's the sweetest funniest little thing - to the point that we've questioned the medication as it's the only factor - other than just regular growing/hormonal changes - that we can think of... We stopped about a week ago, and she finally seems back to her normal self. Fingers crossed!

[Mumof3L]

Thank you for these comments. We've just take our son off his desmo as it had stopped being consistently effective and his behaviour had become very aggressive at times...not like him. I really hope it helps as want our nice boy back.