Six Things to Do Right Away When Your Child is Diagnosed with Type 1 Diabetes

If your toddler or older child has just been diagnosed with type 1 diabetes, this post is for you. I know there is an overwhelming amount of information coming at you right now. You’re feeling like you aren’t qualified to take on this role. Your heart is broken, you’re exhausted, and you can’t figure out how and where to begin. I was there too, and I’m here to tell you from the other side, that you CAN do this. It WILL get easier. Here are six things you can work on right now that will make adjusting to life with type 1 diabetes a little easier. (These are just MY opinions and what works for us, so if these things don’t work with you and your family, that’s totally cool!)

1) Get a Dexcom Continuous Glucose Monitor

Figure out right now how you can get a Dexcom continuous glucose monitor on your kid. It will help you step out the constant state of fear you are living in. I honestly don’t know how I ever managed without it.  If you don’t know what a CGM is, watch this video.

If you’re insurance won’t approve a Dexcom (or other CGM), get your endocrinologist to write them a letter saying that it is medically necessary. If you’re endocrinologist won’t do this, or doesn’t want you to have one yet, GET A NEW ENDO. To me, that’s a sign you don’t have a well-informed, progressive doc. We had to jump through some hoops to get insurance coverage for Dexcom, but I did not give up and we got it just two months after diagnosis. We paid upfront for ours and Dexcom said that if we didn’t end up getting insurance approval, they would refund us. So yeah, their customer service is amazing. I’m thrilled to have this technology backing me up and guiding my dosing decisions.

2) Get Others to Join in Your Learning/Training Process

We are incredibly fortunate that my parents live nearby and are very involved in Lily’s life. They came with us to all the initial classes/trainings at diagnosis — this helped twofold: 1) They were able to learn the basics with us and 2) They were able to help out with entertaining Lily so we could focus on learning.

Bottom Line: YOU NEED TO HAVE OTHER PEOPLE WHO CAN WATCH YOUR T1D CHILD. This is crucial for your sanity, for emergency situations where you can’t be with them, and so that your kid can learn to be without you. I realize not everyone is fortunate enough to have family who can or will help out. Get creative. Do you have close friends who can step up to help? Or an existing babysitter/nanny or neighbor who watches your kid(s) who can come learn with you? Can you hire a babysitter to do it? Can you find another mom/dad with a T1D kid and do a childcare trade? I agree that it sounds overwhelming and scart, but the sooner you can get another person outside of your household to learn how to care for your diabetic child, the better. I know plenty of families who have successfully trained nannies, sitters, friends, etc.

3) Listen to the JuiceBox Podcast!

Dare I say, I’ve learned more about the art of dosing insulin from this fellow parent of a type 1 diabetic than from my endo? Scott Benner hosts this podcast and he has been the primary diabetes manager for his daughter Arden for the past 12 years or something. He’s incredibly insightful and is very successfully managing her diabetes using ways your endo will not teach you! He has a cult following. LISTEN NOW.

4) Find Good Go-To Snacks and Low Treatments, but Don’t Drastically Change Your Diet Right Away

My toddler seemed to sustain herself on small meals (OK, snacks) at the time of diagnosis. I initially made little bags of snacks with carb counts on them so it was easy to grab and dose for them quickly. Finding snacks you know they will reliably eat allows you to perfect dosing for that particular snack – remember, it’s a lot of trial and error.

You will likely see in your online searches that eating a low carb diet is the best way to get good control of blood sugars – this is not true for everyone. Low carb diets do help maintain steadier blood sugars FOR SURE, but I find that eating a healthy diet — everything in moderation — is best for us. However, I would suggest identifying some low carb meals and snacks that your kids really likes… That way, if they are hungry, but are running high, you don’t have to make them wait to eat. My personal belief is that if you create a lot of restrictions around food and make a big deal about diet, it could potentially cause food issues/disorders later in life. I also just want to let Lily be a kid as much as possible!

Treating Lows… most endocrinologists will teach you the 15-15 rule, which is to give 15 carbs when your child is low, then retest again in 15 minutes. For Lily, 15 carbs is WAY too much and will usually send her skyrocketing. Figure out the approximate amount of carbs it takes to bring their blood sugar up to a safe number (for us it ranges from about 5-10) without causing a high that you’ll need to give them insulin for again. And figure out a reliable low treat – Lily wouldn’t drink juice for the longest time, so we used smarties and gummy bears, or milk if the low wasn’t too drastic. This all takes trial and error, so if you’re the type of person that remembers things better when you write them down, keep a notebook with all your trials in it. You’ll start to see patterns and gain confidence to make your own tweaks to their insulin to carb ratio.

5) Connect with Others in Your Shoes

Connecting with other people who are living with type 1 (whether it’s them or their kid) is really therapeutic and comforting, especially at first. You’ll also likely learn more from others living with T1D than you will from any doctor. The DOC (diabetic online community) is a great place to start. There are several Facebook support groups; a simple FB search will help you find them. You can go on Instagram and search the following hashtags to find people to follow: #type1diabetes, #t1d #t1dlookslikeme #type1toddler, #t1dmom #t1ddad #dexcom #beyondtype1, etc.  Another great way to connect is to join the JDRF One Walk. Look online for any meetup groups in your area, too. Beyondtype1.org is also an awesome resource.

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Our first JDRF OneWalk, just about three months after she was diagnosed.

6) Look into Insulin Pump Therapy

Getting a Dexcom allowed me stop living in fear, and getting an insulin pump allowed us freedom to eat in a less controlled and stressed way. Since children are often snack-obsessed unpredictable eaters, having an insulin pump with a remote bolus feature is  the best way to deal with this (just my opinion, though) . Before we got a pump, I was giving Lily up to 10 shots a day. I was also trying to give less than .50 unit boluses with a syringe, which is nearly impossible to do with syringes – you can’t be sure how much they are actually getting. There are several pumps on the market that let you give a bolus through a remote (they don’t even know you’re doing it) and that also have the capability to bolus as little as .005 units. Also, you can make tweaks to their basal rate of insulin all day. Think of basal insulin like long-acting Levemir or Lantus insulin, except once you inject Lantus, you can’t take it away, you just have to wait until it has run its course. With insulin pumps, you can constantly make tweaks to the amount of  basal insulin you’re getting because it’s all fast acting, you can even shut it off for bad lows.

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First day pumping on Nov. 11, 2016. I was terrified, but it ended up being much easier of a transition than I anticipated. If we can do it, you can do it too.

 

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