6 Months after Diagnosis- What I wish someone told me

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.

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@beef5stew - This is one of the best and truest things I have ever read. Our 2 year old, Zoey, was diagnosed in December of 2016 and were told the same things that you were. How hard it would be. How its constant. How your life is going to change forever. While all of these things are somewhat true…there is hope and technology is amazing. I don’t have anything to add to what you said but I wanted to say thanks for the “positive” comment and let you know that your words have helped me today. Having a positive outlook when in the face of adversity is a trait that cannot be underestimated. Good luck to you and your 7 year old. I hope all is well.

Brian

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I have been a type 1 diabetic since 1962. It is so much different now than it was in 1962. I have done everything I ever wanted to do. I am still in good health. I see my doc every 3 months. I do take his advice and follow his suggestions. Every day there is new hope. Diabetes is not a good thing to have, but it can be managed. There are many things much worse than diabetes. I wish you the best.

I was a veggie for a while during my 20s and things were fine. Back in those days there wasn't carb counting, just the old "exchange" program and I still had good control. Just know your ratios and bolus accordingly. I'm now a believer in everything in moderation, but eat what works for you and keeps you healthy and happy. Just make sure you get enough of all essential nutrients by varying what you eat.

Cora

Stay strong ! You are alive and healthy for a reason . Help those that are less educated and show your family how you can manage this . First night in this site and it’s helping me cope with this

@beef5stew…Just read your post and since it’s about six months later, I hope things are starting to settle down for both you and your daughter. There are a lot of well meaning people but the last thing you both need is pity and horror stories about the future.
I was diagnosed in what I call the “dark ages” 1972. I just turned eight when may dad noticed I had the classic signs of hyper-
glycemia. After two weeks in the hospital, coming home and resuming life was difficult, but my mom never let on. At that time people thought it was their duty to give young parents their unsolicited opinions no matter how grim. As a parent myself, I think I would’ve lost my mind, but my mom always kept strong and kept me going no matter what others said including nurses and doctors. With my parents support, I achieved all of my goals. I went to collage, got married, and have two healthy although annoying, young adult children. I also achieved my greatest ambition, becoming a Diabetes Nurse Educator. For me, the most important things my mom did was not allowing any selfpity, always think of myself as normal, and not an invalid, taking injections and (urine)testing were as common place as brushing my teeth, living to 100 is doable as long as I take care of myself, and a very strong sense of independence. These lessons have served me well, especially when I was pregnant, which I was strongly advised against. Through life whenever I’m told I shouldn’t or can’t because of diabetes, it gives me the will to show I control diabetes, it doesnt control me. After showing your post to my mom, she wishes someone would’ve told her about what to expect with puberty and adolescence. This is a tough time for every kid with or without diabetes. The hormonal and emotional changes can wreck havec with control especially for girls. Self-esteem and body image issues can also be more problematic for the girls, and of course teenage rebellion. Having good communication with you and a lot patience on your end is essential. Also my parents sent me to summer camp for kids with diabetes and having friends with my same issues was extremely helpful. Your daughter is going to be just fine because her mom is willing to fight for her. Love, support, and knowledge are the best defenses to have in your arsonal in this battle. All the very best😊

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Thanks for the response! My daughter just hit our one year diaversary, and we celebrated at Disney world. It may sound weird, but it is the way we acknowledge it. She is on omnipod and dexcom, and doing Great! She eats what she wants, when she wants, and we cover it all. Honestly, its has just become part of our routine. I have to admit, I am concerned about this headstrong, confident 8 year old becoming a teenager. phew… that might be tough.

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That is certainly wonderful to hear. What I have “preached” for years, to accept one’s diabetes and manage it [T1d} to fit an individual lifestyle.

Do continue to keep a close watch on her, without being obvious or intrusive, during her formative and developing time - well, forever. Her overconfidence could carry her to far at times and get her into trouble; a few days of “over indulging” or a Disney World celebration will not cause harm in the long run.

Happy to hear everything’s going so well!:grin:! I’m so happy that kids in the present have the tools necessary to live more freely.
Again I wish the very best for your daughter and family​:+1::+1::+1:

This is what I needed to read right now. Thank you!

You must be strong! I wish your daughter to be healthy and enjoy life.

Thank you for your encouraging and informed words. My 13 year old daughter is newly diagnosed, and I will re-read your post when I am feeling overwhelmed.

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Yes yes yes! You are so right! Almost one year in with my daughter being diagnosed. She is ten and on the Dexcom. Omnipod has been ordered. We just incorporated what needs to be done with our lives and move on! We don’t make an issue out of it. Of icourse as a mother I do worry but it’s normal to worry. I worry about her, my son, my hubby, my pets. It’s all a part of life! Thank you!

My son is 4, just diagnosed 1 month ago, meanwhile juggling a 4 week old. I really appreciate your wisdom, encouragement and positive attitude. I really needed to hear these things THANK YOU

So glad that you read my long post. We are now 2 years into this journey and have it completely under control. There are always a few off days, but we get right back on track.

We always say “childhood first, diabetes second”

I just had to reply.
Reading your post was very interesting. It shows me that you have the right attitude for your daughter. Life for her will be easier and more manageable with that attitude from you.
I am 57 and was diagnosed as T1D 4yrs ago. Initially I was devastated. Things got better then things got worse. I was diagnosed with wet Maclear deterioration due to diabetes. Leading to being legally blind. Life isgetting better now. Hope to be able to drive again ( normally and regularly) by myself in maybe the next year. So life is getting better again.
My point is this, yes you are correct overall, but do not forget this part of the disease. It can and will change on you over the course of time. Why, God knows, cause I don’t . But you have to adapt, overcome and improvise. Your daughter needs to know this too.
It will be a constant challenge for as life goes on. It’s all in how you react to those changes. Being T1D can be a big pain in the butt and it takes constant vigilance to keep it manageable. If you get that thru her head she will be just fine. The other half of my point is this. It is not diabetes that will kill you, it’s thecomplications that come from it. Bad decisions now affect tomorrow. Tomorrow meaning in the future. Understanding this part, calmly and seriously, will help in the decision making processes she needs to follow.
Remember this, you will not always be there to tell …ummm… that’s not a good idea. She will make mistakes, eat stuff she shouldn’t, do things she shouldn’t. She will have to learn from those mess ups. It’s something each of us have to go thru. Alone and living with this disease, is the way it always will be. Nothing and no one can change that. Not yet anyways.
It is most important that you don’t forget the bad side. Because when you do it can and most likely will bite you when you least expect it.
Oh did I mention that I was following my drs suggestions to the letter when the eyes went bad. It happened 6 months after I was diagnosed T1D. Being on the insulin and starting to repair the damage diabetes had done to me, I ate well, everything I was supposed to do. And had done so for most of my life before I was diagnosed. To this day, my wife will tell you I ate healthier than anyone she knew.
But just don’t forget there is a monster in the closet dying to get out. Living positive and doing the best you can to manage the beast, is the best way to go. Be flexible, prepare for as much as you can, but make darn sure your daughter knows that stuff might happen no matter how good she is or no matter how well she follows treatments etc. that stuff, things may happen along the way. This disease is unpredictable and expresses itself differently in each person who has it.
I don’t want to be a major downer at all, but a realist. Knowing the good and the bad is important in living with this disease.
Keep positive, stay flexible in your mind, and roll with the changes and overall it will be ok.

Hope I help
Charlie

God Bless you :pray::pray::pray::pray::pray::pray::pray::pray:

Thank you all for your comments. It helps this grandma of a newly diagnosed 4 year old.

I was so thank to read your post. My 13 year old son was diagnosed just over 3 weeks ago. He is amazing and strong and taking this on like the trooper he is. I’m struggling. I’m depressed, scared, sad, mad and everything in between. I have good days and bad. And fortunately the bad are getting farther between. Thank you again for your post. Very encouraging to read

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