Friday, May 14, 2010

Part of my daily life...

Like many if not most parents of a disabled child, I subscribe to a large number of helpful groups for parents of disabled children. There are continuing discussions of what to expect, how to handle professionals, warnings of non-helpful doctors, equipment, surgeries, choice making about various treatments, etc.

Today, I was struck by a post in one of these groups regarding drooling (this was after a long thread regarding hip surgery, which a huge number of kids w/cp need to combat displasia--the hip popping out of the joint as a result of developing without weight bearing). These are what most parents of severely disabled kids deal with regularly, in case anyone wonders why we are not that involved with community events and volunteer work at school. This is what parents of special needs kids are chatting about instead of fashion, politics (although we also have to be constant activists for disability rights) or the latest major news item:

Have you had a swallow study done? This will show where the drool is coming from. Is it from her stomach or her mouth. There are also other studies that can tell exactly where in the mouth it is coming from.

Scopolamine patches seem to be the best medical way to at least reduce drooling. It is a medicine for motion sickness and one of the side effects is dry mouth. They come in patches that are usually put behind the ear. The patch can be cut if one patch dries out the mouth to much. Recommendation is one patch every three days but there have been no studies that established this. We use one patch every two days and keep the old one on so my daughter has two patches on at a time. Still doesn't work for us.

The other medication is glycopyrolate which is an anticholinergic which is taken a couple of times a day by mouth. The main side effect is dry mouth but other side effects are constipation, headache, urinary retention, and irritability.

Then you can go to Botox or surgery.

Botox is injected into the salivary glands. It is done by an ENT and requires sedation. It is suppose to reduce drooling for 3 - 6 months and then requires re-injection. We tried it and all the other salivary glands in her mouth worked overtime and she drooled just as much as ever.

Surgery can either cut off or remove the salivary glands. This is also done by an ENT. There is good reduction in drooling, but over the course of years, the glands can reconnect or re-develop, or the other glands can work overtime. We also tried several surgeries and nothing worked.

So, as one parent said, summer is coming and I am getting ready for my second job as a therapist, teacher, nurse, researcher and activist. Oh, I do this now.

1 comment:

  1. Hi, I am Jason's mom. I came across your blog because you wrote my nephew an email about the app ChoiceBoard Maker. He wrote that app basically for me and I totally understand why you are so excited about the app because I am.
    When I came across this post about drooling. My son also drools nonstop. He still does. But I know many kids with CP stopped drooling with g-therapy by Dr. Oswal in India. I also had g-therapy for almost 2 years now, but no change in drooling. But he has improved somewhat (like being able to poop on the toilet instead of diaper). Anyway, just google g-therapy and join the yahoo group. I am also doing quantum reflex integration with Bonnie Brandes using cold laser. Google that as well. I am sure you will research the heck out of it. All the best!