I am the parent of a wonderful 7 year old who was diagnosed October 30. We were already in DKA when the diagnosis was made, so it involved a few day in the ICU. I searched for contacts and people who can provide insight or answers to questions on “where do I go now?” Overwhelmingly, the people I spoke to told me how things will change, life will be hard, and I have to adapt. Some provided condolences, others pity.
That was probably the worst advice at the worst time I ever had. When I was in the “middle” of coming to grips with the news, I didn’t want any sympathy or negative perceptions. I was looking for hope, and there wasn’t any to find. I was getting depressed, and started my own research and found the hope I was looking for. If you are a new parent, or a new T1D person, here is what you should know:
-This is manageable with minimal impact to your life. In the last year, the world changed for T1D treatment. Technology is now able to make most of the decisions that a pancreas would have made. Get a CGM for alerts and understand that you will want an artificial pancreas within the next year. It will require a little maintenance, but will NOT be overwhelming or stop you from doing anything.
-A cure is inevitable. It’s a matter of time and funding. Be an advocate to the extent your time allows. Even emails or phone calls to government officials can go a long way. Use your contacts and make your voice heard.
-Insurance companies are a pain. They have a dance they go through to try to minimize how much they pay for services. You will need to occasionally appeal their decisions and escalate issues. It’s a bit of a pain in rear, but it’s part of how they work.
-Diabetes management isn’t particularly cheap. If you company allows for HCSA (health care spending accounts) to pay for health management without paying tax, use it. You should expect to put at least $2500 into that account a year.
-People that are telling you that things are tough are looking at it from their experience and perception. Many of them did not have the advantage of the technology that is available today. It was tough for them, it won’t be for you. Expect each meal to include 2 minutes for quick calculations and maybe some insulin dosage. Once a week, you’ll need to spend 30 minutes to update/change your CGM and pump setup. Not a big deal.
-There will be alot of information coming very quickly. Half of it is “best practices”, the other half is “Emergency Preparedness”. The keys I found are: 1)Understand the glugacon shot, where it is, and how to use it. 2) Have emergency phone numbers available and ready…particularly your Endocronologist 24 hour line. 3) How to use insulin pens. You’ll probably have these for the first year while you go through the Honeymoon phase. The rest you’ll pick up in time (food, nutrition, exercise, mood, treating highs and lows)
-Don’t expect perfection. Most of the time, you’ll be able to manage it, no sweat. Occasionally, you’ll have something that throws you for a loop. You deal with it and move on. Don’t dwell on it.
Bottom Line: You have been diagnosed at the best time ever. My 7 year old told me she likes having diabetes because she gets to miss some of Math class. That’s amazing. She doesn’t see any of the difficulties associated with diabetes because she hasn’t seen any obstacles. This is only going to get better as most of the pump companies release newer version of an “artificial pancreas”. Medical solutions to restore insulin production are pretty much available, but the immune system keeps thwarting it. The breakthrough we are waiting for is how do we “reprogram” the immune system to stop attacking the pancreas. When that is found, T1 diabetes will be history.