a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Monday, September 26, 2011

Trying Something New

Not sure where the line is drawn exactly, but in my world a 4 year old is not considered a toddler anymore. And the departure from toddlerhood brings up an issue for Rob and I, which is Oia's drooling. We are not bothered by the fact that Oia drools. To love her is to love ALL of her and what she does and we do so whole-heartedly. But, not everyone does. Kids her age are well aware of the girl with the wet chin, occasional drool, and damp shirt. Kids have commented, many stare, and a few have actually backed away from her as if she was contagious. Those are the times I cuss CP.

On an average day, I must change Oia out of a soaked shirt at least once, many days twice. I've learned long ago to dress her in light colored shirts, mainly white ones, as this color doesn't show much wetness. Her long blond hair is ALWAYS pulled back into a ponytail or otherwise it becomes wet and sticky with food, stuck to her neck and chin, and an absolute mess. So needless to say, we've come to the place where we are ready to try Robinul, a Glycopyrrolate, which our developmental pediatrician suggested we could try long ago. The drug is used to treat many things but our goal ~ a dryer mouth with NO side effects.

To be certain to find the right dose without going overboard thus avoiding any potential side effects, we began at the lowest possible dose of .1 mL. That basically equates to about 1 drop. Over the course of the last two weeks we have worked our way up to 1.5 mL. This seems to be where we are noticing less drool, if any. We are going to continue the dose of 1.5 mL on days where Oia will be among others her age, such as on school days, at birthday parties, on play dates, etc. Other times, we'll leave her be. That's the beauty of the medication ~ it metabolizes quickly so there is no wean period and we can stop or start the med at any time.

Overall, I'm not crazy about medicating my child for something that may seem so vain to others. But at the end of the day, we want Oia to be socially accepted. If the remedy to this particular difference in Oia noted by others is as safe as a minimal dose of medication, then we're on board with it. And so far, so good. She wore the same shirt all day long today, from morning to bath time. And it was even bright pink. This is a first for us. So at this point, we'll continue the use of the med as long as it continues to treat her well.


Photo taken on a day of no medication. Not too wet yet.

4 comments:

  1. I didn't even know there was a such a medication out there to help with drooling. I'm sure my brothers-in-law would LOVE for us to try that out on Samantha! :)

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  2. Thanks for sharing! I've never heard of this before. My DD is also a drooler at 4 y.o. Please keep us updated on how it works long term. Our family is very familiar with the ponytail requirements, multiple shirt changes, stares and questions by other kids. This transition from toddlerhood to pre-k is something heavy on our hearts and minds these days as well. Thanks again for sharing, I'm tucking this away for our next developmental visit.

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  3. Hi ladies! Long time, no comment (sorry about that)! I am excited to look into this, and I applaud you for trying to treat the condition if you can do so without side effects. I think you are exactly right on target. I don't think it is wrong to treat the drooling and I don't think it is vain. Whether it is right or not, people judge others and Oia will, as you have seen, be judged by her peers (and adults) for drooling. I may try this now that I am familiar with it, and we have a much less significant level of drooling (so much less that my husband insists my daughter doesn't drool, but that is because he doesn't do crafts with her as I do, when it is most visible as spit drops onto the paper she is coloring). Besides helping me become aware of a treatment option (thanks, Mo!) you have hit home yet again at the topic nearest to my heart right now - whether I am doing too much or not enough to help my daughter. I have taken a few criticisms lately from people close to me who wonder why I keep adding a new program or activity to Hannah's full plate. I was asked when I would just love her for who she is, and that hurt. But I don't buy that point of view -I don't think intervening and trying to change outcomes means we don't love our kids - I think it means we want to help them achieve the most they can. If social relationships develop differently for droolers then I think we try to stop the drooling, within reason obviously - risks of medication or treatment must be considered, as you have here - but why wouldn't Oia want as much of a "normal" appearance as possible so that fewer barriers stand in the way of making and enjoying friends? This seems to be the greatest challenge I am struggling with right now and I very much want to hear from our readers with CP about similar reactions and experiences, but right now I am in the camp for parents who say they will do whatever they reasonably can to help their kids not have their bodies stand in their way on the path to happiness. If I have Hannah in dance and gym and swimming and these activities help rewire her brain to better communicate with her body so that her right side limbs are not quite so much shorter and thinner and weaker than her left, then I think I am investing in her enjoyment of life and not telling her she isn't good enough for me as she is. But I do think I need to know all I can about how to communicate that to her, because she is not only good enough now, as she is, she is flat out amazing (like Oia) and I want to help her feel as good as she possibly can about who she is.

    Even if my husband thinks my daughter doesn't drool, I will be asking our docs about this medication too - because we are about to start doing more writing, and in preschool that will be at a group table surrounded by peers, and sitting at a table is where I see it most - when I have to blot spit spots that appear when she is concentrating as she uses both hands - coloring, puzzles, working with glue or craft supplies. Thank you so much for spreading the word on this, Mo, and I support your choice. You are an awesome Mama!

    This is from GingerB at gas-food-lodging.blogspot and Blogger hates me today . . . don't actually know why!!

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  4. To avoid the wet shirts, try a bandanna tied cowboy-style around her neck. I'm not a drooler but I know many CPers who are and they have great fun coordinating their bandannas to their outfits every day. Plus, it's much easier to change a bandanna than a shirt.

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