Desmomelt - side effects?

[realitychick]

Has anyone else's child been prescribed Desmomelt and had side effects? My son has taken it twice and has a sore throat, flushed cheeks, intense feelings of nausea for 24 hours but no vomiting, slight temperature, agitation and disturbed vision or mild hallucination - not sure which as his descriptions of what he could see that was upsetting him were so garbled. He didn't take it tonight and has finally settled to sleep. Last night he slept about three or four hours out of his usual ten, but we didn't make the connection with the drug.

I Googled it and found some cases of similar but not identical side effects and would love to hear form anyone with experience of this med - good or bad.

dd was on Desmomelt for about 2 years. No side effects. She was also on oxybutinin for a few months but got auditory hallucinations so that was stopped. She is now 11 and has been completely dry at night for around 2 years

Glad to hear she's grown out of it.

My son was dry for a year with just lifting once a night until recently when he started wetting very frequently, with no apparent reason, so the doc suggested this, but if these are the side effects, I'd rather just wash a duvet every night! Been quite scary for him.

My ds was offered this once, but when I found out that it stops them from making urine, I declined.
I am not surprised that your ds is unwell, after all urine is meant to clear out metabolic byproducts and build up of those in bloodstream can lead to toxic symptoms.
We did put up with bedwetting for a while, but made an interesting observation since.

My ds had to go gluten free for unrelated reasons and bedwetting stopped literally overnight. Even more interesting, as I also keep gluten free, I no longer need to get up at night myself.

You could try and see if cutting out wheat in the evening meal makes any difference? Or even cutting down foods/drinks that are highly concentrated in salt or sugar in the evening, to ease the workload of liver and kidneys overnight.

nightcat - that's a really interesting observation. He eats a lot of gluten via bread, rice, pasta - most of his staple foods are high gluten. I'll try cutting back on them and see if that makes a difference.

He's still feeling a bit ill, nearly 48 hours after taking the tablet!

rice & potatoes are fine, just watch wheat (+ salt & sugar levels) in the evening

The more I read about urea cycle (for my ds), the more certain I am that it was a right decision not to give him this med.

His urine tests were showing high urea anyway, so it's like, where would it go if it wasn't eliminated out of the system? It would back up somewhere else, blood stream, liver, kidneys? Probably better to try and work on the cause than treating the symptoms.

Give it a few days for him to get better, it's a bit like detox for him to clear it out of the system. I also reckon that it might depend on body mass and various other health factors how they react to slight changes in toxicity levels. Cutting down wheat in the evening should help in any case.

Good luck :)

We already had plans for today, so couldn't change the diet, but interestingly he left all his pasta but ate the tomato sauce and meatballs. And at lunch he just wanted fruit and milk but no bread. this is very atypical of him, so maybe his body is telling him to cut back on gluten. Will cook rice tomorrow, and baked spuds the next day to see if this helps. He's been very out of sorts all day and off his food, which is another sign, apparently. We're taking him back to the doctor tomorrow. I'm quite shocked that he could react so strongly after only two doses.

it doesn't stop them from making urine - it slows urine production down overnight, which happens anyway when physical development starts the body producing vasopressin naturally.

desmopressin is only a synthetic imitation of \link{http://www.pedisurg.com/PtEduc/Nocturnal_Enuresis_%28Bed-wetting%29.htm\vasopressin} - it's not intrinsically harmful.

Ponders, you could say it SLOWS the production of urine down overnight (although our paed did say it stops them making urine, I suppose it's temporarily, not like complete stop though), but by doing this it's suppressing body's normal function and the metabolic products will build up in the body somewhere. In theory, vasopressin could close the blood vessels enough to even stop them leaving the cells, temporarily (my ds had neuro symptoms described as brain cells death due to toxicity).
Although this hormone/enzyme might be made by the body in response to its normal function, doesn't mean that it can be added w/o side effects (in some cases at least).

RC, that's very interesting re wheat dislike, sometimes it's best to let them guide you.