7/26 -Austin's progress

7/26 -Austin continues to do well. Although we have yet to get the spasms under complete control, he is still progressing well in his development (because as some of you know, developmental delays are related to infantile spasms). He is beginning to pull up to stand! He's not quite doing it on his own, but I have no doubt he will be pulling up on anything and everything very soon! As most of you know, he's been on a tough treatment which is ACTH injections. One of the downsides of this medication is that it cannot be abruptly stopped once started. It has to be gradually tapered a little at a time. As of today (7/26), he only has 2 1/2 more weeks to go until we are finished. Unfortunately, this treatment did not work for him. It was never a guar
antee, but we definitely had our hopes up. He has gained a ton of weight as a result of the treatment. People who don't see him on a regular basis would barely recognize him. His cheeks are extremely puffy due to fluid retention, plus he has a ravenous appetite that exists 24 hours a day (yes, he typically gets up every 3 hours at night to eat!)! I've been told that this should all change and revert back to normal once his treatment is done. And, supposedly, he should also lose the extra weight. Maybe then, people will stop looking at me like I'm "one of those mothers" when we are out in public! Since the ACTH did not work, his neurologist has him on low doses of Zonegran, an oral medication this time. We have started to see a decrease in spasms, but we are still not quite sure if the medicine is going to do the trick, but we are still hopeful anyway. I will keep you all updated on all Austin's progress with his news meds and development.