Monday, November 30, 2009

Stepping Up

I actually had another post planned for today. It's edited and everything, but some things have come to my attention in the last few days and I feel like I have to say something.

In the last few days I've read the blogs of two different special needs parents whose children are suffering adverse effects after the long-term use of reflux medications. Both of these children ended up in the hospital undergoing a series of medical tests. We no longer give Charlie reflux medication--mostly because it never seemed to help us--but I was always told my doctors that the medication is safe and never told about any side-effects.

If there's one thing I've learned as Charlie's mom it's that no two parents are going to do it alike. You can co-sleep or put your child in another room, you can pursue alternative or go strictly traditional, you can feed them all-organic, gluten-free, casein free or you can take them to McDonalds. When your child has special needs, there are even more decisions to make and for me, the stakes seem higher. This morning Charlie woke up at 4am whining and fussing. No amount of rocking or singing would get him back to sleep and he seemed to be getting more and more agitated. I was panicking. I was sure this was related to his seizure med change and couldn't decided if I should give him some Va1ium or just wait to see what happened. Finally, my husband was struck with a brilliant idea and took him into the kitchen and fed him a peanut butter sandwich. He instantly went back to sleep.

I'm sharing that story because I want to be clear that I'm no doctor and I'm no expert. I'm as confused as anyone else about the right things to do for my child.

But I also think that it's time we "Special Parents" started asking some tougher questions. I myself can think of at least four different questions I've never asked our doctor or even researched when it comes to medications. For example, do medical students take classes in pharmacology or is that covered more in residency? Are drugs ever tested on children? What kind of data is available about the long-term use of medications in children? Is it possible that kids with CP, with their funky digestion and limited mobility, process drugs differently than typical children? Whose job is it to tell us about possible side effects?

This doesn't mean that I think we should stop giving our children medicine. I just think we need to be hyper-vigilant. We are still our child's best advocate. I know that even as a tiny baby, doctors would recommend over the counter products that were contra-indicated for Charlie's heart condition. Who knows how many other times this happens? Doctors are stretched thin these days and we would be best served if used them as a resource and not as almighty beings.

I know this parenting thing is never easy. I know we're all doing our best. I also know that for me, I'm going to try harder to be informed about the medications that are recommended for Charlie. I'm also going to try to limit the use of medications for extended periods of time.

OK, stepping off my soap box now--don't forget to enter my giveaway to win free art or stationery! If you don't want it for yourself, it would make a great gift.