Salivary Glands

[Dexter]

Hello everybody,

Needed some advise about drooling issue.

Amyas has sever drooling problem which gets worse as he is on Clonazapem.  we have been advised to tie his salivary glands to help with this issue but are not too sure if its a good idea.

Has anyone done this and what has your experience been?

Regards

Dexter

[Ruch]

Dexter

Ruch also has a severe drooling problem. We were never advised to tie her salivary glands.  We were told if we felt that it was impossible to deal with there is a medicated patch she could wear that stops salivation. I do not know the medication because we have not gotten to that point  but it is worth looking into before a surgical procedure. 

Ruch OT advised us years ago to simply tie a bandanna or scarf around her neck and when it is wet from all the drool to change it. It is easier to change three scarves a day instead of three shirts or have her sit in wet clothing for hours.  We even match the colors with her outfits. 

Best of luck

Karen

[Dexter]

HI Karen,

We have tried all sorts of medication.  The most effective was the Hyocin patch behind the ear. However after 24hrs it would cause a rash and we would have to remove it.  Also tried Glycopyrronium Bromide which was no help at all.  We are now trying a Atrovent Inhaler which seems effective only in high doses.

We do change scarfs a lot but it does trouble us to see his jackeks and shirts wet all the time.  May be we shouldnt let it bother us.

regards

Dexter

[Ruch]

We usually put a double layer of scarves. A bandanna first and then a larger scarf over it. We have to change them 3-4 times a day but the it usually keeps the shirt underneath dry.

We try not to get bothered we figure it is better than all sorts of medication and the complications or each one.  

regards 

Karen

[Lorna]

Hi Dexter

Callum was also allergic to the patches, but the Glycopyrronium Bromide works very well for him. Have you considered the dosage may be the problem with the Bromide? Callum takes one tablet am and pm. I think you are right to try and find a solution - I think the drooling becomes more of an issue as the boys get older. Callum thinks a wet chin is not very cool when you want to kiss your girlfriend!

Kindest regards,

Lorna

[Dexter]

HI Lorna,

Whats the dosage of the Bromide?  I think Amyas was on about 3mg/day.  We have noted that excessive drooling also effects his speech. I know about the girlfriends.  Surprisingly Amyas seems to make sure he swallows before he kisses a girl on the hand..

regards

Dexter

[Joan Martin]

Dear Dexter

We had difficulty with drooling with Giles (now aged 21 years) We were recommended by his then Paediatric consultant to try Trihexyphenidyl (Benzhexol). This drug is used to address the dystonia with the side effect of decreasing drooling. He has now been taking it for 6+ years and has no need to wear additional items to handle drooling.

Whilst I cannot recommend this to you - I am not qualified to do this - only a mum. It may well be worth discussing it with your consultant.

 

Please let me know how you get on.

 

Best wishes

 

Joan

 

 

[Dexter]

Hi Joan,

Thanks for that. I will put it forward to the neurologist and see what he has to say.

regards

Dexter

[Lorna]

Hi Dexter

Cal takes 1mg am and pm. He does not drool at all any more.

Regards,
Lorna

[Steen Bray]

Keir drools quite a bit, but he also bites the inside of his mouth. While we are going to get the rest of his teeth removed, we have been told that the drooling process actually helps speed the healing.  So, like a lot of the other posters, we uses bibs (Keir is only 3 1/2) and deal with the wetness.

If the drooling does become a problem later on in life, we will be looking at this thread to help out with solutions.

[Caroline]

I've noticed that the mouth biting seems related to the drooling. Gabriel would start drooling, and the more he drools the more he bites, etc

So part of the strategy to stop the biting is to keep his mouth dry

Don' t you experience the same?

[Dexter]

HI Caroline,

We havent noticed this and that ma be because Amyas does not bite his lips or inner cheeks.  The only reason we want to reduce the drooling is because it effects his speech and also messes up his clothes inspite of wearing bibs and scarfs.  We will be speaking to the doctor about benzhexol as Joan has suggested. 

regards

Dexter

[Dan Cederborg]

Ever heard of a Drug for LNS called Carbidopa? Please let me know if you did, and did it help in anyway, thanks, Dan