I’m a health writer/editor, and since my son was diagnosed with Type 1 diabetes, I’ve been talking with the editor of my prior books about developing a questions-and-answer format guide for parents with children of Type 1 diabetes. This is obviously a no-brainer for me because I’m doing the research anyway, but here’s the thing: my son is a toddler, so some of the questions I have are different from the questions parents of older kids would have. Since the book is going to be aimed at addressing the most common questions of parents of Type 1 kids, I’d like to take a survey: what are some of the most important questions you had when your child was first diagnosed? I’m interested to hear your responses no matter what age your child was at diagnosis, whether he/she was the same age as my son, older, younger, whatever.
Our son was just recently diagnosed; he was six when diagnosed but has since turned seven. When he was first diagnosed I remember having so many questions and I have some experience in diabetes education: I am a registered nurse turned teacher and during my 23 years as a registered nurse I had nine years in diabetes education. So you would think that I would know what I was doing but what I found was just the opposite: my clinical knowledge of diabetes in no way prepared me for the reality of living with it 24/7. The first thing I did when we got to the hospital was to call a former collegue in diabetes education and ask for help. My questions were things like: How do we deal with his birthday party? (he was diagnosed on Sept. 24 his birthday party was already planned for October 18th). He is a very active little boy; he loves any sport involving a ball so I had so many questions about keeping him safe while continuing to let him play all his sports (so far since diagnosis we have made it through football and are currently in basketball). I hope this helps because we are really still just learning. We see a pediatric endo. in December and would like to start talking about a pump. Does your toddler use a pump?
OUr ped-endo has recommended that we get him on a pump but the crappy insurance coverage we’ve got won’t cover it. I’m currently trying to get him onto MaineCare so we can get a pump but the forms are just killer, and the fact that I work full time (in addition to raising kids and running a horse farm) means I don’t have much time for deciphering paperwork. Bureaucracy gives me a headache. In 8 months I’ll be able to switch him over to my considerably better insurance, so if worse comes to worst he can get on the pump then.
My daughter was diagnosed 2/07 when she was 21 months old. Thinking back to that time, I remember asking questions about food: What could she not eat? How much should I feed her? How many carbs at each meal/snack? How should I handle the fact that she was a picky eater?
How often should I check her blood sugar during the day? At night? What signs should I look for regarding hyper/hypoglycemia? How do I handle each? When do I need to call you? How do I keep her out of the hospital? When do I check for ketones?
I remember asking questions about the future: How do I prevent complications? When does she need to see specialists? Are there other diseases that she will be prone to?
And of course, I was questioning where the diabetes came from, what had caused it, and if we could have prevented it.
I hope this helps.
Insurance is just crazy; we haven’t even checked with our insurance yet to see how much of the pump they will cover. I agree that paperwork is nuts; I am a teacher so all day long I am dealing with papers and at the end of my long day the last thing I want to look at is another piece of paper! So I haven’t filed everything with our insurance yet because I just can’t face the paperwork monster.
It’s a great help! Thanks! A lot of those questions really resonate–I think I have asked most of them either internally or to the clinic staff. Not all of them have been answered yet…!
I totally sympathize with the “picky eater” part of it–if you look at my blog posts you’ll see I’m in the middle of the same problem with Eric. Toddlers are a challenge to feed at the best of times, but when they’re diabetic, boy oh boy…