I told you I would be back. We are approaching Emmas 1 year mark with Diabetes and also her 2nd birthday. This year has been a whirlwind, from her diagnosis, to her current basal rates. I have learned a lot about Toddler Diabetes!
In this post I will talk about:
- The questions I first had
- what I thought I knew but actually didn’t
- as well as some tech lingo and facts to help the newly diagnosed T1 parents!
First let me say, I have been diabetic myself for 15 years, was diagnosed at 12 almost 13 years old. So as you can imagine I assumed I knew diabetes but boy was I wrong. Emma and my diabetes couldn’t be more different. Her body is very sensitive to insulin and carbs. A miscalculation of even 1 or 2 carbs can send her into a high or low blood sugar. When the doctors first gave me her insulin ratios I assumed they would not help her. When she first started .2 was her average bolus for meal time. As a diabetic who typically takes 5-7 units per meal I was shocked that .2 would effect her at all. But let me tell you I learned fast! Toddler Diabetes is not the same as being an adult with diabetes.
The most help came from her diabetic nurse educator and other diabetic parents! In fact I still talk to several T1D mamas daily to exchange war stories and ask their opinions on what ever struggles we are facing that day. The diabetic community is a family, the Toddler Diabetes community is family. In fact many of these people who I have only met online have become some of our closest friends. They understand more than anyone else ever will, you don’t know until you know…you know?!
I learned to advocate for Emma as well as our family! Every chance I get to educate someone about diabetes, I take it. I advocate to doctors, nurses, friends, family, strangers, social media, everyone who will listen. I try to break the stereotypes that surround diabetes, I try to get Emma the best care, and I want people to recognize Emmas devices so maybe one day children on the playground will not have to stare at her insulin pump or constant glucose monitor.
Diabetes has made my family stronger. Emma was diagnosed during a pandemic and most days my husband and I relied so heavily on each other. Our doctors only saw us virtually and we had to make sure that Emma had the constant care she needed. When she was first diagnosed I worked full time, eventually I left my job. I was able to turn to full time blogging and content creating so that I could dedicate more time to Emma and her health. I understand this is not an option for most families but I wish more people who do not experience diabetes on the daily would understand the amount of time, patience, decision making, and responsibility having diabetes and being a parent to a diabetic consumes.
A diagnosis is a grieving process. Give yourself time and grace to accept this new aspect of your life. Understand that it may not get easier but it will become a norm and you life will continue. The first few months feel heavy, but as time goes on you will adjust. Your view of the future will change but should become more optimistic as you adjust. Toddler Diabetes may seem impossible but you will get through those days and see happiness again!
Finger pricks or constant glucose monitor… which constant glucose monitor?
For Emma a CGM was the best bet. She had finger pricks for 3 days after her hospital visit. I slept on the floor next to her crib. I was testing her blood sugar ever 45 minutes… It was not going well! Once we started Emma on her Dexcom I was able to monitor her from my own bed. I still need to run into her room to bolus or give juice. But at least I can stay in bed when there are no problems!
Syringe, pen, or pump?
We started on a syringe with diluted insulin for Emma, her dosages were to small for a pen. To be honest the extra steps of diluted insulin became a lot on us. It was one more thing to worry about. We worked hard to advocate for her so they would but her on the pump as soon as possible. Our two main options were the Omnipod or T:Slim. The Omnipod is tubeless which is absolutely amazing for a hyper toddler! The T:slim has a feature called basal IQ. Basal IQ will turn off your basal if you are dropping low also a great option for a toddler!
Do we have the right Endocrinologist?
This was very complex for us…. At first the answer was definitely NO. Our first endocrinologist would not adjust insulin the way it needed to be adjusted. For the first few weeks Emma was in the 200s and 300s. As a T1D myself I know how unhealthy this was. When I called our hospital and asked for a transfer of care we were luck! We got transfered to the doctor who diagnosed Emma when she was admitted to the hospital.
He already knew us and Emma. We love her current doctor! He is quick to make he changes needed, and he trusts us to adjust and advocate for her. If we feel something is needed he will have a conversation rather than a lecture. He truly helps us make the proper choice. If you live in the Boston area and would like a great Doctor let me know. I will happily recommend Emma’s!
If you are a parent or loved one to a newly diagnosed diabetic child! Please send me a message, I would love to talk, and just be a shoulder to lean on. I post daily on my instagram page about our life as a family if three Type 1 diabetics, follow along with us and joint the T1D Community I would love to hear from you
Michelle & Emma