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“Boston Children’s Hospital Room”

The Diagnosis: Where do we go from here?

One day you’re in the kitchen preparing lunch for your child without a thought in the world knowing whatever it is they’re eating is nourishment. They will be full, they will be happy, they will continue to play care-free. You wake up the next day needing to take your child to the doctor for signs of a UTI, you have noticed they have been much hungrier and thirstier than usual, but you write it off as “a growing child”. They send you home with some medicine and a cranberry juice regimen. You’re halfway home and your phone rings, usually you don’t answer when you drive but you recognized the doctor’s office phone number.

“Hello?” “Hi, this is so-and-sos doctor, we’d like you to return to the office as soon as possible. It’s about their urine sample.” “Ok, let me just go home and coo-” **doctor cuts you off** “We need you to come back now, it’s an emergency.”

Your head starts spinning, you’re wondering what could possibly be so emergent about a urine sample, but you turn the car around anyway. Not knowing how drastically your lives are about to change when you arrive back at that office, your life, your child’s life, your family’s life…forever altered.

You arrive back at the doctor’s office, and they tell you that after recognizing specific symptoms, a nurse decided to check the urine for ketones. They came back showing “large”, and that you need to go to the nearest Medical Center for further evaluation (with very little other information). “What are ketones?” you think to yourself on the drive to the hospital. You get to the Emergency Department, let them know that your child’s doctor sent you, they respond with “yes, we’ve been expecting you.” and bring you straight in…no wait. Your look at your child, happy, laughing, having fun on this big adventure and you’re wondering what could be so wrong because your child doesn’t LOOK like they’re having an emergency.

Next, they check your child’s blood sugar: it reads 498. HUH? What is range? What does that mean? You know nothing about glucose or ketones and now they tell you that they are admitting your child because they are in danger of going into Diabetic Ketoacidosis and it needs to be controlled as soon as possible.

The hospitals Pediatric Endocrinologist comes in to finally hand you your child’s official Type 1 Diabetes diagnosis. “Diabetes Mellitus” is what they called it, still not knowing the gravity of the situation but your world still has that crumbling feeling in your chest. You ask what that means and they tell you that your child’s pancreas is not functioning and not producing the body’s natural insulin that it needs. You take a deep breath and ask what’s next: they tell you that you will be in the hospital for the next 72 hours minimum while going through extensive education and training on how to keep your child alive. They hand you the syringe for the first time after showing you how it’s done, you’re terrified because how are YOU the one that’s supposed to poke them? You wipe your tears and tell yourself, “you have to do this”, and you DO IT because that’s your baby and their life is everything to you.

Suddenly, you’re not just “Mom” anymore. You’re a nurse, you’re a dietician, you’re a mathematician, you’re a new breed of HERO.

A Type 1 Diabetes diagnosis for your young child is a whirlwind. It feels like the longest AND the quickest 3 days of your life, you feel like you’re in there forever, yet you managed to cram a lifetime worth of education into your mind in just 72 hours. You will feel both defeated AND proud at the same time. You keep asking yourself what it is you did “wrong” or what you could have done differently to prevent this, the answer is simple…this wasn’t your fault. A life-altering diagnosis such as T1D is extremely overwhelming but not impossible, and you absolutely are not alone! There are many of us who have lived those same exact feelings in different scenarios. PERSPECTIVE is EVERYTHING. It’s natural to let your emotions get the best of you especially in this situation but there are many ways to turn that into something productive. Your job is to be the best mom you can be to that child who looks up to you, it’s just a little more complicated now. They are still watching you, loving you, and seeing you as the hero they always thought you were before this. We want our kids to see us succeed and conquer anything that’s put in our path, and as Type 1 Moms, we do that every minute of every day. WE were built for this.

There are many resources available to T1D children AND their families while they learn to navigate their “new normal”. They have education, they have camps, they have communities for both children and parents of children with Type 1 Diabetes. You also have the support and the backing of the American Diabetes Association (ADA) that can help you navigate back to school, 504 Plans, and other legal protections while at school.

Below is a small list of resources to help you get started and pointed in the right direction:

National Advocacy & Support Organizations:

1. 1. American Diabetes Association (ADA) & ADA Youth and Family Corner provides expert advice, family meet-ups, and the Safe at School Program which helps secure legal protections, 504 Plans & proper care at school.
2. 2. Breakthrough T1D (formerly JDRF) offers free BreakthroughT1D Bag of Hope for newely diagnosed chilren.
3. 3. Children with Diabetes is an online community that offers advice, conferences, and practical guidance.
4. 4. Begin with Hope Guide for parenting a child with Type 1 Diabetes.
5. 5. T1D Resource Library @ breakthrought1d.org offers videos, guides, articles, and more.

Camps & Recreation:

1. 1. ADA Camps & Diabetes Youth Families (DYF) offers targeted programs, family weekends, and peer support like “Brave Buddies”.

Education Apps & Tools:

1. 1. Counting Carbs with Lenny mobile app created by Medtronics to help kids with carb counting. Also, check out the Juice Box Podcast.

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There are many more resources for the diabetic community which I will continue to add as I go along, and I will be sure to include more in my diabetes-specific blogs!