My Child Was Diagnosed With Type 1 Diabetes…Now What?

Tom Karlya

Published on May 26, 2020 Updated on June 11, 2020

Any parent that has heard those words before, has stood right where you are standing. You’re likely picturing a long, dark tunnel ahead and feel any glimmer of light in the distance will only turn out to be only another train coming at full speed. It’s extremely daunting.

Breathe.

Been there, done that. In fact, two of my three kids have been diagnosed with diabetes. They’re adults now; one was diagnosed at age 2, and the other at age 13, so when I say I have stood where you are, I ‘m 100-percent sure I know what you’re feeling. Let me share a few things that might help with where you are today. Your new normal.

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Stay Offline, Focus on Your Medical Team

For the first 30 to 45 days, stay away from your computer. You won’t, but I strongly suggest you do. During this time, it should be you, your child, and your child’s medical team. If you go online you will be given a ton of information from people who although well intentioned, can only share their own story. I’ve often called this the ‘snowflake’ disease because it’s so different in each person. You medical team are the only ones who understand this disease and how it will impact YOUR child and family. Please trust me on this.

Another overwhelming phase at the beginning of this new journey is learning all the new terminology and lingo. You need to learn this. You need to know what they mean to your child. Let the medical professionals be the ones to answer your questions and explain what happens when your child eats, sleeps, attends school, plays outside, and takes their medication.

Learn what it all means for the first 4-6 weeks.

It’s Here to Stay

Type 1 diabetes is not an inconvenience nor a condition; it’s a disease and once your child is diagnosed, it cannot be willed away. It’s here to stay. That said, I can now share that my daughter is married and a successful Nurse Practitioner while my son is engaged, very successful in the tech industry, and one of the best ‘gamers’ (ask your kids) in the world.

People with type 1 diabetes win medals in the Olympics, drive race cars, become Miss America, are musicians, and even become a judge on the Supreme Court. So, while we know it’s impossible not to worry, just know that no one is limited by their diagnosis. Their dreams can be realized.

The first step is understanding and accepting the fact that what they have will not be gone until such time this research world figures out a cure and many are working on that, but the best thing you can do for your child is to empower them to control this disease. Follow your medical team’s advice and try to maintain their glucose level as close to range (80-120) as possible.

You’re All Human, Give Yourselves a Break

You should aim for those numbers, but know your child will go high and go low. You’ll check your child with a glucometer. This device is a gauge, not a report card. If your child’s blood sugar needs adjusting, you’ll adjust it. Remember, your child’s body used to do this almost 500 times a day and now you are doing your best to check it only 10 to 20 times a day. It seems impossible at first, but it will soon become the new normal. It just takes time.

What you know two weeks from now will be volumes from where you are today. Six months later, you’ll feel like a pro compared to this day. The equalizer in diabetes is education. If you don’t control diabetes, it will surely control you. Educate yourself and your child. (For more information, check out our article on What Parents Should Know About Type 1 Diabetes).

Management Tools: We’ve Come a Long Way Baby

I’m so envious of those recently diagnosed. When my daughter was diagnosed in 1992, we waited 90 seconds for her blood sugar number, there was no such things as CGMs and pumps. We had to measure two types of the hormone that regulates glucose in the blood and one of them was made of pork. We checked her blood sugar by pricking her toes because at just age two, her fingers were so thin and frail. Today parents and children have tool that make blood sugar monitoring quick and easy.

It’s true, there’s a long road ahead but it’s up to you and your child how well you do. Make a pact to yourself and your child that you’ll do everything to own this disease. OWN IT! Let your child own it too. Never stop educating yourself and others. I made it through the tunnel and you will too.

I am a DiabetesDad!

Tom Karlya

Tom Karlya is the Vice President of Diabetes Research Institute Foundation and founder of DiabetesDad.  He has two children, Kaitlyn and Rob, who were both diagnosed with type 1 diabetes. He is the co-creator and founder of GetDiabetesRight.org, a site dedicated to educating communities about diabetes. He has lectured at numerous conferences across America and played a pivotal role in passing legislation in the U.S. regarding the missed diagnosis of diabetes. He has been instrumental in advising a national initiative with the Beyond Type1 Foundation and was awarded two Telly Awards for his video on the missed diagnosis of T1D.