Wednesday, July 4, 2012

Observe: Teenager or Medicine?

 Have you noticed that in the last several months I don't have too many shots of Brother.

I handed it all off to the fact that he is becoming a teenager as the reason that he was avoiding socializing with people or playing with his little sisters. I remember my nephews that I raised going through the phase of being in solitude unless their friends were around.

So when Brother continued to avoid playing with his sisters, keeping far away from Sister's friends when they came over and hauling off to his bedroom when guests came I thought it was all part of the "becoming a teenager" process and the social anxiety that is so famously Fragile X.

I was wrong.

How did I find out?

By accident.

Fragile X Syndrome has no cure. The only thing you can do for someone with FXS is to medicate them to help with their symptoms, like anxiety, hyper-arousal, ADHD, OCD, and Autistic-like behaviors. When you look at that list it can mean that your children can be on several different medications. It can also be a lot to keep track of when you have more than one child on multiple medications for multiple challenges.

It can get overwhelming, as a parent, to decide on whether or not to medicate and what to medicate for that is the most beneficial for your child.

You have to be diligent in watching them and observing them when starting new meds and you have to make sure you watch and observe them over the span of them taking the meds. You don't want them to become a medicated Zombie. You just want them to become a better version of themselves.

In short, you have to really pay attention and really know your child.

Sometimes over the course of them growing up and going through life's stages you can miss what might be medications and what might be just who they are.

Well, here is the accident: I forgot to get a new prescription from our doctor before this particular medicine had run out of refills. So between the run-around of trying to get hold of the pharmacy and getting hold of our doctor we ended up missing a dose.

That day I noticed that Brother was out playing with Sister and her friends.

The next day I was still not able to get the medicine refilled so I continued to observe Brother's behaviors and interactions and noticed how much more he was acknowledging and participating with others around him.

I started thinking maybe it was the omission of this medicine he had been without for a few days and called the doctor to discuss taking Brother off the medicine entirely. We decided that he may have grown out of the behaviors he was being medicated for and, possibly, is just learning how to cope with some things on his own.

Now this medicine did have it's purpose, it was for helping with huge meltdowns and anxiety--just and overall calming. So without the this medicine I was noticing that come evening time he was a little more whiny when we told him to go to bed and he has had a harder time falling asleep. But, with the help of behavior plans and an increase in one of his other meds we are at a happy place. So all meds have a benefit and can help our children, but that does not necessarily mean that the medicines they are on will always stay the same. You have to be prepared for the change. I am just thankful for the small mistakes (or sometimes I like to call them heavenly interventions) that help me realize things that maybe need some changing.

I LOVE seeing him interacting so much more.

I get the opportunity to take pictures like this:

To donate to a cause raising money for families
affected by Fragile X Syndrome here in Utah and to help raise awareness of Fragile X Syndrome you can go here.

2 remarks:

Joel and Jessie said...

I love those sweet pictures! I am also happy how that all worked out!

Karen Mortensen said...

Thanks for sharing that story. Glad he is doing better.