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.
What a great post! What a great attitude to have and to be modelling to your daughter. You guys have got this!
I was dx when I was 9. 20 years ago now! I’ve been to uni, lived overseas, travelled, had the usual number of obligatory failed romances, got married and am now planning kids! Diabetes has never stopped me from doing anything I’ve really wanted to do and it won’t for your daughter either.
Sure-there’s a bit of extra ‘maintenance’-it really is all in your perspective though.
Hehe…I also hated maths…i never thought I’d end up so proficient with calculation of percentages, grams, rates.
Keep lining yourselves up with the wins and the pluses-it’s a choice always available to you
While I have to honestly say, your post is most definitely 100% accurate, it still doesn’t explain the struggle.
I have been diabetic for over 11 years now, spent 6 months thinking it was type 2, only to find out it was type 1 after falling to 165 lbs, which I had not weighed since 6th grade.
I still struggle with the fact that a Bavarian cream jolly roger is never a good idea!!!
And, while most folks have told me that once I get used to diet soda, the regular would be like syrup, and to sweet to drink… I have only found that once I go low and get to drink some Coke, it tastes just a good as it ever did…
I am glad your daughter has you as an advocate, but I think your perspective is still not as accurate as a person who has diabetes.
I think there will be multiple persepectives to Diabetes. My 8 year old daughter’s view of Diabetes will be far different from yours, as would a T1D that has been working through the condition for 30 years. I agree that one is not more “accurate” than another, each persons interaction with T1D will be unique in some ways.
My perspective is a parent who is finishing up the first year as a caregiver to a T1D. This last year has been very difficult as I had to quickly learn how it all goes together: Doctors, Technology, Pancreas, Insulin, Drug Makers, CGMs, Pumps, and Insurance Companies. At the end of the first year, I went from a father who was terrified for his little girl, to a father who knows I can integrate this into our lives and just make it another part of our unique family.
We opted for the Omnipod due to the lack of tubing. Ideally we want a hybrid closed loop system, but none are approved for patients under 14. Insulet has a solution slated for late 2019 or early 2020 that we think will be a good fit.
I’ve long maintained that, on the psychological level, this is in some ways a much harder struggle for the parents than for the PWD herself. When it’s someone else’s health at stake, especially your own kid’s, it can seem like every spike or valley is a judgment on your adequacy as a parent. That’s really unfair with this disease because NO one gets a flat line all the time. So getting your expectations adjusted appropriately is an important part of the learning curve, and it sounds like you’re doing exceedingly well at it. Kudos.
It’s wonderful to see such a positive attitude in a fellow D parent. My hope is that you hold on to that attitude through the years. It will definitely help you through the rough times ahead.
Cgm was the game changer in my opinion. I have a widget on my phone that shows me her BG in Real time and the trend. if she starts to drop fast or approach a low, it alarms
I was a 2 years younger than your daughter when I was diagnosed in 1978.
I have had, and continue to have a fairly brilliant life. My parents didn’t get upset or stressed when I was diagnosed, so I didn’t either.
To replace the sugar I was no longer permitted to eat (very strict diet in the early days), my mother taught me to swear. I felt incredibly special because I knew all sorts of naughty words that other kids weren’t allowed to use. I was not allowed to use naughty words at school, but did of course - muttering the “f” word under my breath when i dropped a pencil and so on. I looked angelic though, so if the teachers ever heard, they assumed they misheard. Lol.
Technology these days is amazing, although not moving quickly enough. That said, I use Libre rather than CGM as I prefer to control my pump myself, and I also prefer to ignore my D occasionally.
After nearly 40 years of D, I still swear like a dock worker, but thoroughly enjoy the life I’ve been given. My parents are both alive and healthy, and we have such fun together as adults (I did leave home at 17 though, that may have something to do with it…)
My son was diagnosed in January and manages to stay positive. Celiac Disease hit him a little harder. I think I stress and struggle more to make sure he continues to be able to do the same things he always has. I worried way more than I should before diabetes…which morphed into sleepless nights that turned me into a walking zombie after diagnosis…before Dexcom. The struggle was keeping a smile on my face remaining positive for him. Dexcom saved my sanity…I know people have been doing it for a very long time without the benefit of technology but I thank God for it. He had a severe low in the middle of the night shortly after being released from the hospital and I just could not sleep after that. I am way more comfortable now and it is becoming just a part of our lives…we stay positive and when my son gets down, I remind him of how strong he is and we count our blessings. I always let him vent when he is overwhelmed. We do T1 walks and spread awareness. Being the parent of a T1 is hard. Trying to not let that show is even harder. He has too much on his little shoulders to worry about the weight on me. He is resilient. He moves through life like nothing has changed. We have come a long way since January and we try to put a positive spin on everything…but I will never sleep the same again.
First year is the hardest when you are the parent. There are stages you have to go through including depression and fear. It gets better. We have definately changed as a family from where we were a year ago, but we’ve chosen to integrate diabetes into our lifestyle and not fear it. We learned what we should and should not do, we have a strong support network, and we use technology to ensure we always know whats going on. Looking at the horizon, I can see her going on a Hybrid closed loop system before middle school, and a full artificial pancreas by High School. This week, we will be spending a few days in Orlando to celebrate her diaversary. She has an A1C under 7, and is just as happy as everyone else. Yes, life changes…but that’s just part of the journey.
"When the devil taps you on the shoulder and says ‘you aren’t strong enough to stand against the storm’. Smile back and say ‘I am the storm!’
May I suggest that you read Dr Richard Bernstein’s book Diabetes Solution. It essentially focuses on managing diabetes by eating low carb. Many people are resistant to this approach but for me it was an absolute game changer (along with a cgm). It may seem impossible but it is not and once you get used to it the rewards are such that you are unlikely to willingly give it up. I am not disputing anything you have said above but just want to add what I have found personally to work. I can go on about how and why (and I will if you ask ) but suffice to say that my a1c is now in the very low 5’s with no dramatic lows, and I am in a group where there many many young kids who are in the same position.
) but suffice to say that my a1c is now in the very low 5’s with no dramatic lows, and I am in a group where there many many young kids who are in the same position.