My Sweet Boy

I've spent a lot of time talking about Robert's behavior these last few months. It all started at the beginning of the year. The first couple of months I blamed teething for the awful behavior. And then I just happened across a website where people posted stories about adverse reactions to medication and I typed in pulmicort in toddlers just to see.

The stories I read were describing Robert to a T. Mainly flying into rages at the slightest thing and completely unpredictable behavior and loss of appetite. When I thought about when his fits started and went back and read my blog, it was about 1 to 2 weeks after starting him on the medication.

Some of you may wonder what I'm talking about because you've been around him and never witnessed these fits. He tends to do ok when we're at church or playgroup. A lot of times they happen when I'm putting him in the car, going to a store, in restaurants, when it's time to come inside, when it's time to stop playing at a friend's house, or when you take something away from him. But then again, we can do some of these things and he's perfectly content. That's what I mean by unpredictable. There are times that it takes me 5 minutes to get him buckled into his carseat. Or he'll do it when I'm checking out at the grocery store and just starts thrashing and screaming and I'm getting "the look" from everyone in the store. Those are the times that I just get in buckled in the car and have a good cry because it's mentally and physically exhausting to deal with one of them.

At his last checkup, I asked the doctor about taking him off of the pulmicort to see how he does. After all, I never intended to put him on a drug for the rest of his life and never attempt to see if he even needed it anymore at some point. When I suggested it, the doctor seemed very hesitant. Yes, Robert has not been sick at all since starting the medicine and for that I am thrilled. But how do we know his problems aren't seasonal and maybe he just needs to be on drugs certain times of the year? How do we know he hasn't outgrown the ear infections that seemed to trigger the wheezing? How do we know he needs it if we don't ever take him off to see?

He was on it twice a day in the beginning and I'm pretty sure he would still be taking it twice a day if I hadn't asked the doctor if we could try lessening the dose. He assured me that this drug wouldn't cause the behavior I was describing, but he reluctantly told me that if I wanted to take him off, that summer would be the best time. I wanted to wait until we were back from Pecos because the kids tend to get sick every time we go.

Once we got back, Robert climbed out of his crib, or more accurately, threw himself out and landed with a thud twice. We turned his crib into a toddler bed and we had the worst week ever last week trying to get the child to stay in bed. We were sleep deprived for several days there. Nothing we did worked. Staying in the room next to him, rocking him to sleep, sleeping next to his bed, leaving him in the room, putting him back into bed over 100 times in a matter of 15 minutes, spanking........ It was awful and we repeated the scenario every time he woke during the night. He was livid. I pulled almost everything out of his room because I knew he'd throw everything out of his drawers and toy bins. I have his dresser anchored to the wall, but he pulled two drawers out and bent the pieces that allow them to slide in in the process. Chris went in one time and the glider was balanced on top of a small toy bin. We have no idea how he managed that. He was in a complete rage. It was awful and we repeated the scenario every time he woke during the night. Friday night was the worst; he woke three different times, the last time screaming from 3-5 am.

I think Thursday or Friday night was the last time I gave him his treatment. Saturday night he went right down and slept through the night, same thing Sunday night and the next two nights. He had a harder time last night, but nothing like last week. He just needed us to stay in there a little while longer.

And lest you think it was just going to happen regardless of stopping the treatment, he also has not thrown one of his terrible uncontrollable fits since then. He's eating more than 2 bites at every meal. In fact, he's eating everything on his plate some meals. I don't remember when he's eaten this much. He's smiling more, he's giving hugs all the time and is sooooo happy. He just runs to Clara and throws his arms around her for a hug. He's more complacent about sitting and learning things. He's interacting more, trying to talk a little more and he's just all around more pleasant to be around. Chris has noticed the difference too. He still has normal 20 month old moments as I would expect, but those I can deal with, and more importantly he can deal with and work through. I can't tell you how relieved I am to have my sweet child back and to know that it's the drugs and not him. And it just breaks my heart that he's been living with this and unable to communicate how it was making him feel.

So now the question is, what do we do if he gets sick next week? I hate the prospect of having to choose a between a sick child and an absolutely unbearable one. I just hope the doctor is willing to work with me and experiment with dosages and treatments because just saying "the drugs make him crazy and we just have to deal with it" is not going to cut it.