Hyoscine - taken orally, any experience, side effects etc.

[hazeyjane]

Ds has started on the injectable form of hyoscine, but taken orally. It seems to be working really well. He was at a stage of having to have his top changed several times a day, dribble pouring out if his mouth almost constantly and some scary choking episodes at night. Today, I didn't have to change his top at all! He is still making some gulping sounds when he sleeps, but so far no choking.

I just wondered if there is anything I should be looking out for, side effects wise - he gets tired very easily, and it warns that drowsiness is a side effect, is there anything else that anyone is aware of?

I also noticed on the leaflet in the pack that it says to discuss with dr if also taking domperidone - which ds does? Does anyone knw the reason, why this might be a problem?

Thankyou

Anybody?

I suspect the domperidone thing may be because domperidone makes the gastric emptying time quicker, which may affect absorption?

Hi hazeyjane you have broken my thoughts. DD like your DS dribbled for England. We were using 2 Hyoscine patches /day absolutely useless
Whilst in hospital having a colostomy the drooling was noticed and she was given Glycopyrrolate 2mgs X 4 day and it is fantastic just one small bib a day.
Sorry slightly off topic, regarding Domperidone a lot of absorbtion goes on in the small bowel so not sure unless they intereact. Would be interested if you find out more.
Don't I just blather on!!

Hi Hazey, I have only used the hyoscine patches, not the oral form. We now use glycopyrrolate as well. It's great stuff. We were not offered the oral form of hyoscine as an alternative to the patches, just switched straight to glyco. So that's not much help to you really! I'm glad it's working for mini hazey and has stopped the choking.

Thankyou

I am going to ask paed or gp about glycopyrrylate, it looks like it may be more suitable. The hyoscine seems to be working, but it is a faffarama to use (supplied in glass ampoules, so have to have a sharps bin, and syringe the liquid out of ampoule with tiny syringe, then mix into 2 half a ml doses) it tastes really foul, even when mixed with juice, so is a battle for ds to take. He has just been put on a 6 week course of augmentin, which he hates as well, so it feels like I spend half the day wrestling medicine into him!

hazey we have tablets which I crush and as they go down her PEG we have no problem. Tonight as a BIG favour I will taste'n'spit and let you know.
But I have heard you can get liquid but it is expensive so your GP may have a sucked lemon face, but what the heck.
Agree ampoules are a PITA.

We used joyrides as dd2 had a skin reaction to the patches. Same active ingredient, and much less drooling.

It can (from memory) cause extremely vivid and alarming dreams/ sort of bordering on the hallucination side/ nightmares, sleeplessness.

She didn't take domperidone, so don't know about contra-indications, sorry.

It's good stuff, though. We used the joyrides as it was cheaper than the medication for exactly the same thing. The paed's used to suggest parents trialled joyrides for effectiveness.

Domperidone used to literally clear out dd after feeds. Not surprising that her weight stayed the same for a year! I also remember reading (in 2005) that Calpol and domperidone couldn't be taken together. I suspect that it is more the motility and therefore lack of absorption that is the issue with the hyocine.

The pharmacist suggested Kwells, or Joyrides, but ds couldn't cope with them in his mouth. Our gp is pretty amazing, when it comes to sorting stuff out for ds, so I don't think she would worry too much about cost.

Sallybear, when you say 'cleared her out' you mean poo-wise?! Ds is the opposite and gets really constipated, the domperidone doesn't seem to have any effect on that!

So far the only side effect is that his constantly runny nose, has been transformed into 2 rank looking green crusts of snot over each nostril, which seem to be impossible to remove.

Yup, it will dry out all those membranes as well - thinking about it, ultimately she ended up with nosebleeds. We used a lot of Vaseline, and I think the nosebleeds were why we stopped in the end.

We went to using them on and off when her speech was particularly indistinct - the saliva just made that sort of thing worse - in fact, it was the noticeable effect on her speech that made us keen to carry on - the wet clothes were something of an also-ran by that point! When your six year old wears bandanas over her school uniform and requires a change of clothes during the school day, you know you need to keep working on it. She wouldn't have coped with the tablets until five or so, so we're talking school age for those. We fannied with patches on and off for years.

Good if gp is willing to prescribe liquid.

Firstly I tasted the Glycopyrollate crushed tablets are disgusting very bitter!
We tried Kwells and they made no difference.
DD has 22-11 unbalanced translocation and had multiple infections green snot ++++ etc Now much improved with weekly gammaglobulin infusions.
Am now jumping to DS who has Domperidone and needs calpol for pain should this not be given together. he is jejunal fed...Panic
A bit off post

Sorry Hazey for the late reply. Yes it did literally clear DD out straight after her feed poo wise. It was awful. A whole year of diarrhoea. When I think back to the registrar in Oxford calling me stupid, it makes me mad. Thankfully his boss believed me when I said that I thought the domperidone was the culprit for her failure to thrive. He said that she should never have been prescribed it. She was given it to help her reflux along with ranitidine.

2old2 - I saw this thing about calpol and domperidone on a calpol patient info leaflet when DS3 was a newborn. The penny dropped when I remembered how sick DD would be as soon as she took calpol as she had been on domperidone then.

hats off to you for trying the glycopyrrolate!!

I tried some of the hyoscine, and it is like battery acid, poor ds. Our lovely pharmacist gave me some pill glide to try (a spray which is fruit flavoured and really effectively masks the taste of the medicine you are about to take, it is used for people with dysphagia and helps tablets to go down too) - of course ds won't let me spray it anywhere near his mouth.

Anyhoo, I am managing to get that and the Augmentin down him 3 times a day with a bit of brute force and an industrial size bag of chocolate buttons.

the best thing is, that it is working, the drool has just stopped, it starts to return at the end of the day before his next dose is due, but it is amazing that i don't have to change his top several times a day and the dribble sores have cleared up.

Have just opened new packet of hyoscine, and the ampoules are different, really hard to break, meaning dh and I have both cut our thumbs, and can't seem to open them without crushing the glass. So frustrating, as can't get the medicine out safely, so ds has missed this morning's dose. I am surprised at just how dribbly he is from missing this one dose - it is pouring out, and he has soaked through 2 tshirts already.

Bollocky bollocks

Many years ago we used to use files to score the neck but we still managed to cut our selves! Have you thought of wrapping a clean tissue round the neck the ampoule not DS.
Sorry if I stating the "bleeding" obvious

Many years ago we used to use files to score the neck but we still managed to cut our selves! Have you thought of wrapping a clean tissue round the neck the ampoule not DS.
Sorry if I stating the "bleeding" obvious

Sorry

Thankyou 2old, after smashing about 6 ampoules, I managed to work out away of snapping them without it crushing, my pharmacist also gave me some syringes with filters that he had ordered in, so if there are any shards, they won't get in the meds.

Phew!