Infant T1DM : Where Are They Now

by | May 3, 2020 | PARENTING

A few years back I interviewed an amazing mama who had had a life changing experience of having her toddler diagnosed with Type 1 Diabetes Mellitus. She is a mother I met through one of my mothers groups and I have had the chance to see her baby grow. I recently had another interview to see how they are doing now. This is what she had to share. If you do not understand some terms its because these beauties live in the United States of America.

Morrison was diagnosed when she was just 3 years old, and she is 7 now and she’s doing great. Her A1C, the 3-month snapshot of how well controlled her diabetes is, is the lowest it’s been since her original diagnosis. When she was first diagnosed her A1C was a whopping 13, meaning she had been in pancreatic decline and in need of insulin for about 3 months before we ended up at the hospital, but at her last checkup in Feb, it was 7.8! Her goal is 7.5 and we are soooo close! Her insulin pump and continuous glucose monitor help keep it managed very well.
Those devices also make it really easy to keep an eye on her blood sugar numbers while she is at school. The past couple years I’ve been able to keep an eye on numbers while shes at school and I can usually text the school nurse when she is high or low and the nurse can typically handle it. We are starting at a new school for 2nd grade in the fall, as I’m newly divorced and living 45 min away from her school now, so I’m hoping it’ll be just as easy to work with the school nurse there as well. It can be stressful getting set up at a new school because with a kid like Morrison who has a type of “special need”, we have to have what’s called a 504 Plan in place, which outlines her disease, the management of her disease, and keeps everyone on the same page as far as care. She’s handled the divorce and the move incredibly well though, so I’m sure that she will thrive in her new environment too.
She understands her condition pretty well, especially amidst the current virus pandemic. Being an immune-compromised kid, she’s no stranger to having to stay home to stay healthy. This is an incredibly amplified version of that of course, but she basically gets the importance. I have been working with her, teaching her how to handle some aspects of her own care too. Namely, we’ve been working on helping her dose herself insulin through her pump for meals, which is a pretty easy task, but the numbers that are entered into her pump have to be exactly right to avoid over or under dosing. She loves being able to sort of do that herself and I’m excited to see how she grows in the management of her diabetes.
The future looks bright for us! They are making huge advances in medical technology every day, and while we’d really love a cure, the technology we have to handle this disease with is almost just as good. Eventually Morrison will have a “closed-loop system” or “artificial pancreas”, where her blood glucose monitor and insulin pump will be connected and “talk” to each other, taking a lot of the extra highs and lows out of the equation. For example, if her blood glucose monitor detects that her blood sugar is going high, it will communicate that to her insulin pump, which will then automatically dose her with insulin to bring the number back to a safe level, and vice versa. If the monitor were to detect that her blood sugar was headed downward, it would communicate that to her pump, which would then cut back the amount of insulin she’s getting. We can’t wait for this! We’re hoping this is the year that this is rolled out and made available for all.
Overall, things are going really well. The world of Type 1 Diabetes is a crazy one and it certainly keeps us on our toes, but we just take it one day at a time and do our best to handle what it throws at us 💪🏻