#6
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(10-12-2010, 11:35 AM)Sara Sophies Mummy Wrote: Were they going to tie off the top or bottom glands? or both?
I was told it was a last resort thing to tie the top ones off as its so painful because the glands will still produce the saliva but wont be able to go anywhere, hence face will swell up. It will take time and eventually the body will top producing and things will be alright.
Will be interested to find out what you were told.

Gosh, we weren't told that! She was supposed to have 3 of the 4 glands done so that she could still produce enough saliva to make tasting foods comfortable (she can't swallow but loves the taste of ice cream!). We were given this as our first option by our ENT, we have never been offered botox or patches or anything like that - have you?

Kirsty x
Mum to 3 gorgeous girls Bethany (12), Amyrose (7) and Chloe (4). Chloe has Septo-Optic Displaysia, Bilateral Schizencephaly, Microcephaly, Lissencephaly, Spina Bifida Occulta, Global Developmetal Delay and Epilepsy. But has a smile that can light up the grumpiest persons day!
#7
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As youve had to postpone the op anyway, cant you discuss the patches or botox with someone apart from ENT. Our childrens hospital has a saliva clininc, they deal with all these problems.

Good luck
#8
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my son as just started the patches, at first i thought as if they going to help, but to my surprise they do, they really do, he had a full one at first but this made him to dry, but they are fantastic he uses a half patch every 72hrs. hope she is ok.
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hi, my son drools a lot! constant changes of bibs, baby bibs were no good they were not absorbent enough we now have special bibs that last a couple of hours max constantly washing and drying them to keep up. Alex has patches (hyocine) 3/4 patch every 72 hrs or 3 days they do make a small difference. he has also used a drug called glycopyronnium bromide i found that about as effective, but the patches are easier to administer. we will probably look into botox or re-routing the saliva glands (you have 3 sets of glands) Alex cant swallow and sometimes has a rash with the wetness. i would be interested to know how successful this type of treatment is hope it goes well.
I never thought it would happen to me.
#10
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We've been using patches on Jasmine but they don't make much difference.. Some days she's quite dry but most days she drools lots. She's very fussy about her bibs.. only accepts few mothercare bibs. I did get her some bandana bibs but she goes mad if I even take them out from her drawer. It's quite frustrating and the bibs get on the way all the time.. but at least her clothes stay dry...
Hope your treatment goes well.. x


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