While the diagnosis can be scary, the good news is this disorder is pretty manageable! I was diagnosed as a child, and I am 24 years old now. With hormone replacement therapy and routine check-ups with my endocrinologist, I've got it pretty well under control.
I used to take Human Growth Hormone shots when I was little, but gave up on it. It was helping me a lot, but I was just a kid... and needles suck. Now, after so many years of not taking the injections, my health has declined enough that I decided to suck it up and get back on the regimen at the start of the new year. (I'm changing insurance companies, so I'll have to wait for the transfer to be completed.)
Anyway, I decided that I should reach out and talk to some other people with my disorder, or parents of children who have been diagnosed. I'm no expert, but I can help ease your worries by sharing my experiences with you. As long as you can get treatment, panhypopituitarism is something you can live with. :)
I'm going to start a video series explaining what I can about my experiences with this on YouTube here: https://www.youtube.com/user/NekoNoNyaan/videos
I hope this helps somebody. ^^
I dis notice that this forum is essentially dead, but I came across it and I'm hoping others will, too! Let's get the conversation rolling again!