A Letter to a Newly Diagnosed Family


 2015-05-31

Type 1 (T1) kids have some rough stuff going on, but know that you are going to be raising a child that is so aware of her body, what makes her feel good and bad and in the long run is going to be so much healthier than most of the people she knows without T1. My son Henry was diagnosed four years ago at age 5. He just had his quarterly checkup with his endocrinologist and he is the healthiest patient his doctor has ever seen. Here are some items that really helped me a lot and I wish I had known about them the day we got home. The most important thing to remember: this is a marathon, not a sprint.

She will get used to the checks; the first two weeks are the hardest. I gave Henry a tic tac every time we checked during those early days, now he just gets up and does it himself. Another thing I did was give him a choice, remember that your child is losing power, she is being forced to check her blood sugar, forced to take insulin. Start with a small choice, what I said was, “Okay, we need to do a blood glucose (BG) check, do you want to use your right hand or your left hand? Do you want to use this finger or that finger?” The same for insulin. “Where do you want your insulin? Do you want to help me get it ready? Do you want to pick the song we sing while we do it? What color tic tac do you want when we are done?” In the beginning this helps, they feel like they have control. Tell them to put the tic tac in their mouth right when you are about to poke them—the sweetness should distract them. Take a deep breath—this will all be easier soon, even though it totally stinks.

Find a group on FB, there are a few groups for parents of T1. People are up at all hours so you can ask questions, no question is stupid. Don’t worry too much about highs right now. Lows are the ones to keep an eye on. In a month or so, you can ask for a Dexcom. It’s a monitor that Henry has put on his body (by me) every seven days and it reads his blood sugar all the time. You can see trends etc. It is AWESOME. But for right now, little kids respond well to eight carbs to bring them back, so here are some great fixes for lows:

  • Stick to fruity candy, the chocolate breaks down slower
  • Miniature laffy taffy or airheads about 8-10 carbs
  • Bernstein Bear juice boxes (they are only eight carbs!)
  • Marshmallows
  • Frosting tubes for super lows
  • Honey packets, or honey sticks are about 8-10g

If I could marry one item on this list it would be a digital scale. Get a scale with a nutritional panel on the side. Game changer. Seriously. Weigh the food—it saves so much time! You can then weigh food you make and get the carbs—it is awesome. You can use the book that comes with it and download the Calorie King App. Then if you are out and about and want to get something to eat at a chain or something they have everything in it.

Carb ratios change a lot. Don’t get nervous. Dude, your math skills are going to be off the chain. Look at you and your expert math at 2 a.m. Once you get it down it will be awesome! Sometimes you have a gut feeling like “this needs a little more insulin.” You’ll notice what spikes her … “this needs less insulin.” Also, activity: if she is sitting for a while her sugars might spike. If she runs around right after eating sometimes this stops the insulin from “attacking” the sugar in the food so they miss each other. With that being said, if she’s a little high and runs around that really drops the high BGs!

LOW CARB SNACKS

  • 1/4 cup almonds (Blue Diamond has flavored ones!) 5g
  • 1/2 cup edamame 5g
  • 1 cup popcorn or smartfood 6.5g
  • Boiled egg 0g
  • 1/2 cup greek yogurt with blueberries (look up chia jam! So great for BGs!)
  • Cucumber and cream cheese sandwiches basically 0
  • 1/4 pepitas 8g (Henry loves the kind with lime and salt)

“FREE” SNACKS

  • Pickles
  • Dip carrots in peanut/almond butter
  • Celery with cream cheese, or peanut butter
  • Deli meat
  • Olives
  • Pork rinds (so gross!) Henry loves them. Gross.
  • Almond crackers

RECIPES

Check out this granola that Henry and his friend Sam Talbot came up with! It’s so good!

Milkshake

2 frozen green tipped bananas (about 70-80g of carbs but this is shared between 4-5 people!)
8 TB almond butter
2 or so cups unsweetened almond milk
2 cups of frozen berries
Hemp protein

Weekend Pancakes

This will make enough to freeze too and it almost always results in lovely blood sugars!
2 bananas (about 56g)
1 cup almond flour (24g)
4 eggs (0g)
8 TB almond butter or peanut butter (32g)
1/4 cup buckwheat flour (21g)
1 cup walnuts (16g)
optional (1/2 cup dark chocolate chips) 60g…(totally optional)

This should make about 8 pancakes. I like to mix it all, then measure it in a large 4 cup measuring cup, then divide out like 1/4 cup or 1/2 cup pancakes … while you are cooking them you give insulin!

RANDOM HELPFUL TIPS

  • Insulin 20-30 minutes before the meal. While you are still on shots. If it’s something like spaghetti make sure you do that.
  • Pizza can be tricky but all kids react differently! We found giving insulin right before, or splitting the dose to work way better.
  • Try a low carb dinner tomorrow. Roast some chicken drum sticks, cook a vegetable that she likes that are light. Try being low carb at dinner time for a bit, that was when we ran into high numbers.
  • Pairing fat and carbs and protein is great. We like scrambled eggs in the morning with avocado and maybe some bacon and we just pretty much quit regular bread. A good hearty grain bread works well when paired with fat and sourdough actually works well for T1s! Check out the super dense Bavarian-style bread. You can also cut that into shapes with a cookie cutter. Just weigh it!

There is a lot of darkness in the beginning, I was there, but know that there is a light. I’m holding you in the light and sending you so much love. I’m sorry that you guys are going through this, but please know, that this diagnosis will be just one of the many things that makes your child unique and wonderful. It feels so unfair at first, and it can consume your heart. You can do this, you can handle this, I promise.


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WRITTEN BY Sara Jensen, POSTED 05/31/15, UPDATED 09/17/22

Sara’s son Henry was diagnosed with type 1 at the age of 5 in 2013. Sara is both the creative director for Genevieve Gorder and Beyond Type 1. She has worked for Kramer Design Group in NYC and worked with a vast array of clients over the past 15 years. She is passionate about foster adoption, type 1, good food and humor. She lives on a tiny island in the middle of a big ocean.