After reading the posts on weight gain I realized something new. Kay mentioned she noticed increased appetite after dose increases, then the habit of eating more was established by the time the appetite effect normalized. I think this may be part of the problem with my son.

Someone also mentioned that some kids seem to have their height more affected while with others it is weight. Jack is definitely in the "weight" group. Even through years over over/undersuppression, his height has remained steadily on the 50+% curve.

But his weight is very sensitive to med changes. Whenever we increase his dose his appetite goes through the roof. In an attempt not to give him food issues, I have tried to let him "listen to his body" and eat when he is hungry. (I also work very hard to keep mostly healthy foods around the house). 

While this method works fine I think that, like Kay said, he gets used to eating more and then never goes back to a normal level.

I have been making some changes lately and we’ll see how it affects his weight at his next appt in October. I have been trying to only give him one serving of each food. Then if he is still hungry he can try a second serving etc etc. I used to let him serve himself and he would take 4-5 servings to start (like he was starving). Then he would just eat and eat until everything was gone off his plate without really thinking about it. The one serving at a time seems to be helping. I also try to never assume how much he will want. For example, he’ll have a dose increase and start always eating a whole sandwich. I used to just keep making him a whole sandwich after a couple of days. Now I am trying to never start giving him a whole sandwich. I’ll make a half, then if he is still hungry he can ask for another half. That way, when his appetite goes back down after a few weeks, he can return to only eating half.

The most difficult part is when we are out and about. I can’t believe how many places offer kids candy and junk. We can’t go to the bank or grocery store without some well-meaning person offering him a sucker. And get-togethers typically have huge, overflowing bowls of chips and treats. Ugh.

We’ll keep searching for the balance. Hopefully we will be able to decrease his dose a little after we see the results of today’s blood test. Then,(again, hopefully!) the lower dose and the changes in eating will get him back on the weight growth curve.

Thank you all for your posts.

-Chris