Alex has a lot of fun little nicknames - Allie Bean, Allie Bean The Beauty Queen, Scooter Butt, Stinker Butt, Monkey Butt, Lovey and a few others - one of the most common is Drooly Julie. Lately Drooly Julie is just out of control! We are going through 20-25 bandannas a day and at least 3 shirts. We've thought for a while now that it may be her teeth - she's had some molars coming in but it's getting worse instead of better. Three loads of laundry a day and 90% of it is hers!
The other day she was sitting in her chair in the kitchen and I could hear her from across the room trying to swallow multiple times to clear all the saliva she had in her mouth - and then she proceeded to start choking on it. And that wasn't the first time she's done that. The choking has become more and more frequent.
Here are a few pictures I took within a 2 minute time frame....
Here's the lovely chin drool!
She's so wet. That's why her hair is constantly in a pony tail too - it's so gross when she gets all that spit in her hair. And when she's sitting for a longer period of time, her pants and straps to her wheel chair get soaked. It drives me CRAZY. Not to mention it doesn't pay to buy her really cute shirts with anything fun or cute on them because you can't see or read anything with the bandanna's covering them. I always try to match her bandannas (which we have tons of thanks to her great friends Miss Jennie and Miss Sheri who make them for her!) to her outfits but the bandanna's are just another thing to draw attention to her. Yep - hate the drooling. With a passion. She's been doing it ever since she was born - you would think there are some things you just get used too. Nope - hate it more and more the older she gets - the bigger she gets the more drool she produces!
And then there's the times when she's finished eating. She had been done eating for over 20 minutes - and notice the lovely chocolate pudding after math! Food bandanna's are my favorite....NOT! Every feeding can equal 5-8 bandannas. And then there are the times when we are out - so we put all of her wet (or food) bandannas in a plastic bag and keep them in her back pack - God help the person that opens that bag if it's forgotten about for a few hours!
(In this picture we actually had to pull the bandanna straight out instead of laying flat to actually try and 'catch' the drool!)
A few years ago we had her on a medication called Robinol to try and dry up her spit because she was an aspiration risk and had actually aspirated on her drool, which turned into pneumonia, which landed her in the hospital . The only problem with that medicine is that it was an injectable - but they didn't want us to administer it as an injectable - so we had to use needles (Zach was a toddler at the time so that in itself was an issue) to draw the medicine up, transfer it to a slip tip syringe and then give it to her via her g-tube. It worked ok, but not nearly enough to fix the issue - and it really bothered us that we weren't administering the medicine the way it was intended to be used - so we stopped it.
This week I called her pediatrician and conveyed my concerns about the increasing amount of choking events and we've started her back on Robinol. It now comes in a pill form so I feel much more comfortable about giving it to her. We crush it up, add some water and push it through her g-tube. Robinol is a medication that is used for stomach issues and ulcers - the side effect of the Robinol is dry mouth, so it's now a medication used for excess saliva. This isn't the first time she's been on a medication not for the intended use of the medication, but because the side effects help with other issues (for example she was on Clonidine - which is a blood pressure medication, but they don't just use it for blood pressure purposes, they also use it for sleep.) Weird.
A few posts back I commented on all of the alarms I have set on my phone for all of her seizure meds - now we've just added two more med doses. She takes one 2 ml pill twice a day. I seriously feel like most of her/our day consists of pushing meds into her.
Here's to hoping we can eliminate bandannas and spit - don't think I can really ever imagine getting there, but a girl can dream, can't she?!?
2 comments:
I know that you dont know me, but i started to read a while ago and came from Harlie's blog. Just something else to think about, but I'm sure you know about it already. There is a patch that is used for motion sickness that is now sometimes also used for excess saliva. It is called scopolamine patch. I think it goes behind the ear and the person can wear it for a couple of days at a time. I don't know if Alex would leave it alone, but it might be an option.
Thank you so much! We have tried the scopolamine but unfortunately she had adverse reactions. Her pupils dilated so much her eyes looked black and it made her dizzy. Thank you for posting and for the suggestion!!
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