Reaching Out

Hello all, new here. My son (3) just got diagnosed with T1D about 10 days ago. It’s been a whirlwind and I still haven’t fully recovered. I know it’s a manageable condition but it’s still intimidating to think of a lifetime of injections and testing. We’ve made the switch already to the CGM and use the Dexcom G6, but can’t get his high glucose numbers under control yet. His endo has been slowly guiding his insulin numbers up, and while I know that they are wary of giving too much too fast and the honeymoon period, it’s just frustrating that I can’t seem to help get him in the range he needs.

For other parents of toddlers, how long did it take to find the right combo of insulin ratios before they started evening out? And for all, any advice for a mom who is still trying to figure out how to cope with this new way of life?

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Hello @AmyJ2022 and welcome to Type One Nation. It takes a little over a year to learn the new language and new science and all the individual tricks and personal experience in taking care of this. I can speak only to my 43 years experience treating my own Type 1. There is no ratio, no rate, no pump or CGM that evens out blood sugar. This is just something you “watch” and then adjust. You watch blood sugar going down, then maybe a meal or a snack, you watch it going up and maybe it’s a walk or a shot, and so on.
Do not despair. I don’t look at the tens of thousands of shots ahead of me, I look at my CFM, right now, see 115 :arrow_right: And I am going to do nothing because it’s right where I want to be. This will change over the next hour or so but I know what to do.

Please go up to the resources tab above and see if there is a JDRF chapter near you. They have fundraisers and those are a great place to network and make contacts. Please reach out and use any and all of our knowledge to help you on this journey you didn’t ask to be on. I know you’ll do a great job and I know you will rise to this new thing and figure it out.

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Hi @AmyJ2022 . I don’t have a toddler with Type 1 but I was a ticket - the years old in fact - when I was diagnosed back in 1963, and I’m still going strong. It probably was not easy, and my parents are no longer here to ask, but I adapted, adjusted, and got used to my once a day shot (multiple daily injections started for me when I finished college). Hopefully his youth will make his adjustment a bit easier, and he will learn his habits and practices that will stay with him. I sometimes wish more of an emphasis had been placed on being deliberate with exercise - it’s a struggle for me and I wish I had gotten into the practice very young.
U knew it’s intimidating but I hope you can be hopeful: technology is well advanced since the time I took shots with a large bore needle; and we have a better understanding of how insulin works and the different types; and there are options if a person does not reasons well to a particular one.
You’re at the base of a huge learning curve. You won’t learn everything at once and that’s okay. Work closely with your endo and diabetes educator, write down questions and don’t be afraid to ask - that’s what your medical team is for. And of course forum members can give you insights about our experiences - just remember we’re not giving medical advice - if you read suffering you want to try, duscuss it with your doctor.
I highly recommend the book Think Like a Pancreas by Gary Scheiner: he works in the diabetes field and has Type 1 himself so his is a unique perspective.
BTW - when he gets a little older your son might enjoy diabetes camp - I had a blast over the summer when I was a child.

@AmyJ2022 Welcome Amy to the JDRF Community Forum! The title you gave to this topic “Reaching Out” is the principal reason that this forum exists. Members here will respond with suggestions and tips garnered while on the T1D journey.

None of my children or grandchildren have diabetes, so I can’t directly answer your question, but I can tell you that insulin, foods, and activity all affect BG levels and you and your son will continuously be making changes - one slide I have when presenting reads “Change - the only constant in effective diabetes management”. I’ve just passed by the midpoint in my seventh decade of my diabetes journey and I’me still making changes in my insulin dosing ratios.

Right now, your son has one of the most effective diabetes management tools - his CGM, in my experience the second best improvement for us, second only to effective insulin formulations. Use his G6 effectively by watching trends, especially during the few hours after meals, keep a small notebook diary of foods eaten and then with the help of Dexcom Clarity reports and graphs work with his doctor in making changes in his insulin dosing.

Best wishes for your son’s long life, diabetes should not interfere with him living a full, active, and productive life. come back here often. ask questions and share your experience.