When Your Child Is Diagnosed with Type 1 Diabetes: A Guide for T1D Parents

I am not a medical professional, but a parent of a child with Type 1 Diabetes. I am my child’s primary caregiver and I was trained by our Endocrinologist’s office, but this no way qualifies me to give medical advice. If you have an issue with your child’s Type 1 Diabetes care, please reach out to your Endocrinologist or call 911. This post contains affiliate links.

If you found this post, it means your child was just diagnosed with Type 1 Diabetes. First of all, I’m sorry. It’s a big blow when any person is diagnosed with Type 1 Diabetes, but this is your child and it’s just awful news to get. Mourn it. Get upset. Cry. Throw something. It’s not fair. It SUCKS. Then get into parent mode. You can take care of your child. Your child will learn how to handle it. There is a lot to handling this disease, but it can be done and it will become just another thing that you do. You just need to know what to do and I’m going to help you manage this. But first, the best piece of advice I can give on this — teach your child to help manage them themselves. Of course, if they are 6 and under, you’re going to be in charge more. But they are going to get bigger and live the rest of their lives with this. They will need to be your partner in this. And as much as we love and care for our kids with Type 1 Diabetes, they have this condition, we don’t. Try to give them grace. This post is about when Your Child Is Diagnosed with Type 1 Diabetes – A Parent’s Guide.

We can be supportive, but at the end of the day, we don’t live it like they do. And believe me, as much as you are both in pain over this now, your child will thrive and be healthy and diabetes won’t be the sole focus of their life.

Our Diagnosis Story:

https://www.themamamaven.com/my-son-went-into-diabetic-ketoacidosis-and-is-now-a-type-1-diabetic/

So Now You Need to Be Sugar Free, right?

WRONG.

When I was in the hospital when my son was in DKA, all I could wonder is “What am I going to feed this kid??”. I figured we’d just go sugar free, right?

— Nancy Horn, Type 1 Diabetes Parent

Yes, we look for no sugar and low sugar foods, but the main thing with feeding someone with TYPE 1 Diabetes is carbs. Not sugars. It’s NOT the same as Type 2 Diabetes. I had Gestational Diabetes (Type 2 Diabetes) with my third pregnancy, not with my son who has Type 1 Diabetes. It’s completely different. Please IGNORE all those people who give helpful advice on managing it who have Type 2 (like saying “this is what my grandpa did”.). My father has Type 2 himself and has been on meds not insulin for over 20 years and he had no clue. He meant well, but it’s different. In fact, I had to tell him what to do when his blood sugar started going low in the mornings.
Ignore people who tell you to give your child cinnamon or something else to lower their blood sugar. Ignore all MLM people who tell you they have a supplement for your child. Your child will be on insulin for the REST of their life. It’s not going to get better, but it can get more manageable.

The 411 on Type 1 Diabetes Vs. Type 2 Diabetes

As you tell people your child has Type 1 Diabetes, be prepared to hear this — “Oh god, are they going to lose a foot? What about their eyesight???” Now, you do have to be aware of complications, but it’s not the same as Type 2’s complications. Shut them down right away and tell them it’s different. Also ignore those people who joke about sugar and diabetes – it’s not the reason why your kid has Type 1 Diabetes. My kid was underweight and didn’t like sweets very much.

Also ignore those people who message you and tell you they have a supplement that they sell/take that will help with diabetes. Most of them time they mean Type 2 Diabetes and it won’t help with Type 1.

Ignore the people who tell you it’s so weird that your kid has Type 1 Diabetes when no one in your family has it. It happens. Plus, if you have family members with Celiac Disease or Thyroid issues, it’s all related. THIS IS AN AUTOIMMUNE DISEASE. If people really annoy you, just tell them that your child has an autoimmune disease. Because it’s true.

With Type 1 Diabetes, the pancreas stops working. Your child’s body cannot make insulin anymore. But the pancreas doesn’t stop immediately. For the next few weeks to months, your child’s pancreas will start sputtering out and eventually stop completely. It’s called “Honeymoon” and your child may not need as much insulin on certain days. My son’s Honeymoon lasted around 3 months. Your child’s honeymoon may be shorter or it may be longer.

So How Do You Know How Much Insulin to Give Your Child?

You will learn how to count the carbohydrates in your child’s food and learn how to give them a dose of insulin to counteract the carbs. There’s something called an insulin ratio to carbs, which your doctor will tell you and you’ll use that to figure out the insulin dose. The formula is basically this — Blood Glucose – Target Glucose = amount to be corrected with insulin dose. See more about this below and for the sample calculation we started with.

You will learn that sugar isn’t the enemy. You will learn that Type 1 Diabetes is very different from Type 2 Diabetes.

Daily Routine

Right now your child will take 4 shots of insulin a day. Three of those are before every meal and one is a long-acting insulin that will be long acting and last 24 hours in your child’s body – giving them basal insulin. My son took Humalog insulin (in a pen form) during the day and then Lantus long acting insulin every night (also in a pen, but it’s a different color). There are different brands and your insurance company will let you know what is covered. If you leave the house, you will need to always have the meal -covering insulin pen with you.If the weather is hot, you will need to keep the meal-covering insulin pen room temperature. It cannot get hot and you can not stick it in the fridge again. With the long acting insulin, that gets kept in the fridge. Here’s two great posts on Travel – one on what to bring with you daily and what to bring with you when you travel.

When your child gets up you may want to check their blood sugar or wait until right before breakfast. If your child is used to being up for hours and then eating breakfast, you may want to check both times. Because things can quickly change and a reading you took at 7AM may be very different than a reading you take at 8AM.
We would have my child come to the breakfast table (in his PJs) and then I’d check his blood sugar with him, using a finger pricker and his meter. We would then figure out what he was going to eat for breakfast and then give him a dose of insulin from his insulin pen. Your doctor’s office will give you a formula to figure out the insulin dose for every meal (breakfast, lunch, and dinner — it’s important to pay attention to this because the doses may be very different for the insulin to food ratio + any correction insulin dose).

Here is the formula we used to use – you can download the google drive document I’ve linked to this and make your own copy and plug your own information in.

HOW TO FIGURE OUT AN INSULIN DOSE

Use this formula: Blood Glucose – Target Glucose = amount to be corrected with insulin dose

_______  — 130 (which is the blood sugar target we were going for) = ____________ * if result is <0 then insulin correction = 0

Amount to be corrected  ______ = ______  {A} INSULIN FOR CORRECTION

                                                         ____  —-> ask Endo Office what you divide by 

COUNT THE CARBS FOR THE MEAL

TOTAL CARBS =  ____  = ______ {B} INSULIN FOR THE MEAL

                            divide by (    ) the ratio for breakfast

                            Or divide by (   ) (for lunch and dinner – is it the same ratio?)   

THEN ADD [A] + [B} = _____ TO GET TOTAL INSULIN DOSE (if a decimal, round down)

I used 130 because this was the highest range of his blood sugar target. If your Endo tells you your child should be between 80 and 140, use 140 in the place of the 130.

DOWNLOAD Insulin Dose Doc here: https://docs.google.com/document/d/1M1dXjL0L2OxKqGIUbIKjJUWt5sodDYj11BAd1lcqzI4/edit?usp=sharing

I would recommend getting a Continuous Glucose Monitor for your child, which means your child only has to prick their finger to calibrate the Dexcom device once every few days. But you’re going to need to get them a phone if you want to see their Dexcom information on your phone (yes, extra cost).

More about that below.

So, when your child is going to bed, if you are newly diagnosed or on shots (we call that MDI), they will have to take a long acting insulin I mentioned at night. We took Lantus, there are other long acting insulins. We always check blood sugar at night also and I would recommend taking your child’s blood sugar in the middle of the night. My son always seemed to go low between 8-11PM at night, but once in a while he would go low at 1:30AM. If you don’t check, you won’t know because most kids won’t feel going low (even if they are sleeping). Having a continuous glucose monitor will help you know when your child is low or high.

Continuous Glucose Monitors and Insulin Pumps

Dexcom is the brand that we have and we go through insurance to get it. It is considered a Durable Medical Equipment (DME) and a LOT cheaper if your insurance puts it through as a pharmacy benefit. There’s also Freestyle Libre, which is typically given to adults and lasts for 14 days (you scan that device to get blood sugar readings). Dexcom is the brand that we have for our Continuous Glucose Monitor and we go through insurance to get it. It is considered a Durable Medical Equipment (DME) and a LOT cheaper if your insurance puts it through as a pharmacy benefit. There’s also Freestyle Libre, which is typically given to adults and lasts for 14 days (you scan that device to get blood sugar readings). There are apps you can connect to it that you can get a reading on your phone. Certain insulin pumps, like Medtronic and T-Slim, have CGMs on sensors that are used for those tubed insulin pumps. We have an Omnipod Pump, which has no tubes. However, if there is any question if the blood sugars on the Dexcom are correct or if my child is very high or very low, we finger prick. Sometimes Insulin Pumps malfunction and the skin where the needle for the pump goes in can get infected. But the Dexcom and the insulin pump my son uses has really given him a better quality of life. Dexcom has gone to an easier way to install (the G5 version used to make my son run away as the inserter needle was HUGE and he now uses the G6). An insulin pump took my son from 4 shots a day to one every 3 days. Now both will fail from time to time and you need to make sure they are working correctly, but Dexcom has caught highs and lows that we never would have known about.

Meals

In the beginning, I relied a lot on packaged foods and free foods (here’s a list I made with low carb and no carb “free foods”). I could figure out the carbs. I wasn’t going to cook because that was a whole math equation figuring out the carbs in itself. For every meal and snack over 5 carbs, my son had to have a shot and frankly he didn’t want that. Here are some lunch ideas that I’ve done as a guide. And if you need to plan things out like a lunch, do it.

For example, the first dinner I made my son, I chose pre-made grilled chicken, added a little cheese, carbed out a serving of frozen french fries, and added nuts and a GoGoSqueeze.

Why Not Go Low Carb then?

Even if you did a low carb or Keto type diet, your child still needs carbs to grow and they would need insulin anyway (albeit less). Our endocrinologist told us to do around 200 carbs a day for my son to grow. However, I do try to cut carbs where I can. There are some days when he has 150 carbs and some days where he may have over 200 carbs. When go out to eat with a hungry teenager, having a 100 carb meal is not unusual.
But what I did do (and you may choose to do what you want) is try to shave carbs where I could. Find lower carb breads for 15-20 carbs a slice. Don’t choose the ones that are over 23 carbs.
There are people that do go low carb with their kids and it’s not a bad idea, check out Let Me Be 83 – but with so many other food issues in my family and the fact that my son didn’t want to go low carb, we have not.
I am hoping that when my son is older that he will go low carb or lower carb. However, he is finally making his own school lunch and going out to get food by himself, so I need to trust he will know how his body will react. He knows that an Indian Curry is great with his blood sugars, so we encourage him to make choices like that. You can find some great low carb or Keto recipes (like fathead pizzas) to make with your kid. That was the first pizza that my son could have without his blood sugar going crazy. Fat and carbs can really do a number on blood sugars (even hours after your child eats).

Know that Puberty Can Mess With Blood Sugars

It coincided with puberty starting for him — which set off another rollercoaster. My son was diagnosed at 11, 6 weeks before he turned 12. He went into puberty around 12 and 2 months. Blood sugar will go crazy during puberty, but that’s a post for another time.

Being Sick can Mess with Blood Sugars

If your child is sick, it will mess with their blood sugar. Make sure you call your endo’s office and ask for a sick day protocol. They will tell you what to do. Here is one example, but call your own practice first. DO not think you are bothering your doctor if you call at 3 AM. That is what they are there for. I

Remember that it’s hard right now, but it will get easier to manage.
Please email if you are having a hard time and I will talk to you — themamamaven AT gmail.com

This post isn’t finished yet, but I will be adding to it.

Image by Steve Buissine from Pixabay 

Relevant Type 1 Diabetes Posts:

How it all started https://www.themamamaven.com/my-son-went-into-diabetic-ketoacidosis-and-is-now-a-type-1-diabetic/

https://www.themamamaven.com/hurricane-and-natural-disaster-prep-tips-for-type-1-diabetes/

https://www.themamamaven.com/traveling-internationally-with-a-child-with-type-1-diabetes/

https://www.themamamaven.com/easy-lunch-ideas-for-tweens-with-carb-counts-for-type-1-diabetic-kids/

https://www.themamamaven.com/the-best-bags-for-diabetes-supplies-essentials-list-included/

https://www.themamamaven.com/no-carb-low-carb-snack-list-for-type-1-diabetics-or-low-carbers/

https://www.themamamaven.com/type-1-diabetes-and-growth-spurts-when-things-go-south/

https://www.themamamaven.com/when-my-son-goes-high-our-life-with-type-1-diabetes/

Products we love – Genteel Gentle Lancing Device Review – https://www.themamamaven.com/genteel-lancing-device-is-a-must-for-people-living-with-diabetes-new-lower-price/

Note: I am not a doctor or have medical training. I talk about Type 1 Diabetes from a parent’s point of view. Always consult your endocrinology team if you have any questions. I advocate for my child until he can advocate for himself.