Age: 13 Year Diagnosed: 2013 Location: Gardena, CA
"One time I went to winter camp, and I took an extra infusion kit for my pump just in case, but not only did my first kit fall out, but the extra one did too, and I forgot to bring the back up insulin pens I was supposed to pack. So my parents had to drive up to Big Bear with more supplies. It took them 8 hours total to make the trip up and back, between really bad traffic and having to stop for a meal, and they were not very happy about it. "
Best piece of advice from Ryan's mother: Educate yourselves. Understand the disease, understand what you can do for the overall health of your child with nutrition and exercise, and understand what you can and cannot expect from the medical and insurance industries. Don't expect the doctor to tell you everything you need to know,, and don't expect the insurance company to take care of your child's needs. You must be the advocate, so the more you know, the better you can advocate.
Also, as much as you're going to want to yell at the rep on the other end of the phone when problems come up with insurance or the ordering of supplies, just remember that they are not the one who set the policy--they are just reporting it. You will get a lot farther by being sympathetic, polite, and asking to speak to the next person up the ladder. You may have to go up a lot of rungs before you get to the person who can actually help you, so don't waste your time with the $8/hr. phone rep who first answers the phone.