Wednesday, June 22, 2011

best idea ever

When I was pregnant with Punkin, it became apparent that I needed to be retested for fragile x. I had been tested in high school, but a better test was available and we had doubted the results since they arrived. When the more accurate test came back positive, the need to find a pediatrician became much more pressing, and the requirements moved from "must be nice and listen to my concerns" to "must know something about fragile x, can't be mean."

After asking around, I called a popular pediatric group and asked if anyone fit the bill. (I didn't include the part about being mean.) It turns out that there was a doctor there who not only knew more about fragile x than its name, but had other patients with the disability and had recently attended a conference on the syndrome.

When we went to see him a few weeks ago, I was reminded of how lucky we are to have him in our lives. He recently moved to his own practice, and Punkin flat-out refused to go in the exam room painted with a jungle scene. He motioned towards the other room, they obliged, and he happily sat and tore paper in the ABC room instead.

It was a routine med check for his ADHD, and even though he really only needed to speak to me, he made sure to greet Punkin first, ask him questions, and praise him for good behavior. My main concern was not Punkin's dose of Ritalin, rather it was the time before and after I was able to administer it. He understood immediately and came up with a solution that only increased his dose 5mg for the entire day. He also understands that he isn't an expert on fragile x and recommended that we see the team at our local University in the fall.

For now he takes the meds three times a day, which means I can give it to him when he wakes up at 5:30am, rather than waiting two hours, before he dumps cereal all over the carpet or breaks my curtains and a meltdown ensues.

I mention all of this because something fairly remarkable happened tonight at dinner. Before this medication change, we had an issue. I made ham for dinner. Punkin likes ham, but he wanted Skittles and Frosted Flakes. He threw his plate, he screamed, he cried, and he dumped his milk out on the table.

"You can eat or you can go to bed."

"Watch a movie."

"Eat or bed."

"Skittles."

"Eat this or go to bed."

"NO THIS!!"

So I took him to bed. And after 10 minutes he was calm enough to come out, pick up his plate, eat the five bites of ham, and be done.

Tonight I could see in his face that he didn't want chicken alfredo. He doesn't hate alfredo, he would just rather eat cereal all day. But he ate the five bites I put on his plate, tried a green bean, and announced, "I DID IT!"

I love meds three times a day.

6 comments:

American in Bath said...

Phew! Congratulations.

Kristiem10 said...

Awesome! Sounds like your doctor is a keeper.

Kathy Groenbeck said...

That is great news!!! What university were you talking about? University of Iowa?

Anonymous said...

Great doctor. Wonderful mom. I sometimes read these posts with a little envy. I so wish we had even a small amount of this knowledge when Robert was growing up. You rock, BTW. Love you!!

blogzilly said...

Like I said a week or so ago...I have a whole new perspective on you...a much deeper respect for and awe when I read tales like these.

George said...

"I DID IT!"
Best sentence ever.