Saliva control?

[Amilazy]

This is a post to see if anyone else has seen an improvement in saliva drool flow with use of stomach relief Hyocene and if so how long the effect lasted.

M has had poor saliva control for over 2 yrs we have had temporary relief with Glycopyrronium which helped for about 8 months. Initially hyocene patches (18 months ago) caused major bad reactions (involuntary limb motions, chokes and irregular breath control). About 6 months ago, when M had been in the nursing home for about 2 months they tried the patches again and found a 3 days on 3 days off provided a balance between irregular limb movement and full flow drool.

Then 2 weeks ago M started to get reflux after PEG feeds (very scary and caused M a lot of discomfort) the Dr prescribed Buscopan tablets to stop the reflux. Buscopan is a different form of hyocene to that in the patches so patches had to stop. Buscopan started last Sat, then on Tuesday without notice her heavy saliva stopped became normal and is still normal. The bad news on Tuesday we had a 3 hr wait in hospital waiting for Consultant to give Botox to her saliva glands, he suggested that as the new drug regimen had saliva under control we should wait for Botox until New Year.

The advantages of Buscopan is that at present at low end dose so plenty of room to increase and no limb movements, though more sleepy. Anyone seen this before?

Tim

[Georgepa]

We use hyocene.Two patches every other day -seems to help .

Georgepa

[Amilazy in reply to Georgepa]

Thanks George, unfortunately Margaret has issues with the patches causing breathing irregularities, and uncontrolled limb movement. Though recently the nursing home regime of 3 days on and 3 days off seemed to give reasonable compromise between side effects and drool suppression. Hence why so happy with the effect of the Buscopan. Hope V continues to tolerate the patches and that they continue to work. Best wishes Tim

[abirke]

Not with this drug. But I am , I should say, B is experiencing increased and thicker saliva though he is on glycopyrrolate. So in fact I was going to ask ya'll whats working.....

I have actually upped his dosage from 2mg to 3 mg.....it has made a world of difference.. He has had no side effects (dizziness) so thats good.....Now to ask Dr if that's ok! oops sorry but the drool was intense and now he can't use the suction machine very well!

I am going to ask Dr about Buscopan as opposed to increasing Bs drug...

That's all I got Tim, Her reflux is gone too....I'd keep hold of that stuff...

AVB

[Amilazy in reply to abirke]

AVB we got up to 7mg of Glycopyrronate before stopping it in March as had reached no effect. Since then nothing until nurses started hyocene patches but had side effects so used on a 3 days on 3 days off which provided about 5 days of little to moderate drool and 1 or 2 of heavy flow and chokes.

The Buscopan has eased the reflux but will see next week about small increase in dosage as Margaret still gets occasional stomach cramps when or just after PEG feed. Our (me, nurses and Dr) biggest worry is if she aspirated on the reflux that could very serious.

While B has no side effects and Glycopyrronium is effective I would suggest staying with that and keeping the Buscopan as reserve for later as sometimes hyocene can cause issues.

Best wishes Tim

[abirke in reply to Amilazy]

Thanks Tim. Sounds like words from the wise about the Buscopan....

Have they thought about her diet as being a reason for the reflux ?What was digestible one day may start sending opposite msgs the next! Maybe too much fat in her nutrient? or too much acid or sugar or sodium etc etc

Well at any rate I am glad you found one thing that helps two things!

AVB

[abirke in reply to Amilazy]

He had a 2 hard nights' sleeping so im hoping it is not due to his drug.....I reduced it today to see if he can sleep tonight....I hate ping-ponging but I did get permission from his dr.

How are you doing?

((HUGS))

AVB

[Amilazy in reply to abirke]

Thanks AVB hope B settles without too much drug ping pong. Unfortunately we are restricted by the PEG to what can be used ("Ensure" in Europe is the milk based feed for balanced diet) tube too small for my puréed food blocked it early on and got read the riot act by nurses.

M settled at present sleeping a lot but smiles when I take her out.

Me, well, I have been to the Dr and have accepted I need counselling as well as some depression meds to up my seritonin just started no effect yet still disturbed sleep and feeling exhausted most of the time, feeling in limbo and unable to move on. I miss 2 way conversations with M.

Anyway I must stop feeling sorry for myself and get out and do something.

Thanks for letting me drain on. Sorry if self indulgent but I find this site is the one place where I know others are going through the same.

Best wishes to you and B

Tim

[abirke in reply to Amilazy]

When I read you how used pureed food in M's tube, thoughts 'of How'd he do that' raced through my mind.....hahah oh I see 'he weren't sposed to do that' as they say in the wee southern corners of Arkansas.....hahah

I am so glad to hear the dr has looked your way even if you had to make your own appointment....someone is now looking after you (well besides all us kids...but as much as I try I can't write prescriptions yet!

I think Georgepa is having the same experience.....he's had a positive outcome, but instead of being happy he is just the opposite, well you read the post. Maybe he needs to go to dr and get his serotonin level checked.....

And if it's any consolation, I too am feeling down (not sad depressed just low energy). It seems like the only time I can get going is when its in emergency .....or full B mode....

I do hope you start getting out. take some classes , maybe even go to a grief group...though I'm not sure how fun that would be ...or join a book club .

When you come home from M's make sure you have T time...

and remember , Youarenotlazy!

AVB

[am2015]

We use Atropine drops once a day at the moment and it seems to help reduce saliva. My husband (a Doctor) did mention that the peg feed should be given slowly otherwise you will have reflux, ideally overnight.

[Amilazy in reply to am2015]

Thanks I have been using bolts feed (manual syringe 4 times a day) always slowly about 3min per 50 ml which M has always tolerated very well, but I do not know about the nursing staff as they give feeds when I am not there, so could be the source of the problem. I will mention slowing the flow when Dr with nurses next week.

I would like to maintain the bolus feeding as it keeps me in personal contact with her. I know the home wants me to allow overnight pump feeding as it makes their job simpler but I am against this as I get a few smiles and reactions during the feeds I do.

Thanks again for the information. M has atropine drops 3 times a day but with not much effect. We have been able to stop them at present with the lull in flow due to the Buscopan.

Best wishes Tim

[carehope]

Hi Tim ,

From other posts related to the very troublesome issue of difficulty swallowing resulting in excess saliva, choking, etc.... the intervention that seems to have the best track record if M could medically tolerate it, seems to be Atropine eye drops administered under the tongue - typically one drop in the morning and one in the evening. Obviously , the dosing could vary on an individual basis as it would for many other meds.. I'd read up on it and propose it to your neurologist , internist, etc... if you want M to try it . Most physicians are probably not aware of it's use for this PSP problem just as they're not knowledgeable about PSP.

[Julieandrog]

Hi

We have used Hyocine for a while now, no side effects thank goodness but its effects seem to be hit and miss. I. Would be interested. In opinions re Botox as it is offered here. It is one of the most difficult symptoms to deal with.

Changing the subject I notice what time people post , bizarre I know, but you were awake early!

Enjoy your day

Julie x

[Jaeffbee]

Just called Dr. to request atropine drops. My mom has been drooling buckets after eating and as the day progresses it interferes with her ability to take in food. I read somewhere lemon drops or other tart drops may help, though it seemed counterintuitive. I gave her a sugar free lemon drop after she finished eating her breakfast. Normally after breakfast she drools so heavily I have to change her clothes. She did not drool! She seemed more peppy too. (I attribute her peppiness to relief). May not be the answer but thought I'd mention it.