The next morning, I called the Endo’s office and as we expected it would be two weeks before I would get into see them for training. Our CDE did further explain some items that had been lost in translation such as rounding units up or down and the exact equations to use for calculations. Let me tell you, I love math, honestly, I do. But insulin and carb calculations leave something to be desired. And my husband will probably skin me alive for telling everyone this but he absolutely despises math so I knew this would absolutely not work for him.
So, I went on a search. We live in a fantastic digital age with all kinds of information and apps that can do great things. We found a couple of different insulin calculators for our iPhones but only one that was simplistic enough that even Abbie would be able to use it. All we had to do was put in the Target Number, the Correction Factor, and the Carb Ratio (which we could change as needed). Then at meal time input the amount of carbs she was having and bam! It would tell us how many units of insulin she needed. It was called Insulin Calculate if anyone wants to check it out.
The next two weeks was actually pretty simple for us. We got into a rhythm on how to do things. Which before I get into her food I guess I need to divulge a little information. Before her diagnosis, I had been on a fully Keto or Low Carb/High Fat diet for about 3 months. I had transformed the way I cooked in the house for breakfast and dinner to accommodate the main entrees and then the side dishes were fixed to everyone’s liking.
For the most part during Abbie’s first year and up to this point her diet had not been altered except for the original things the CDE told me she should not have. She enjoyed my breakfasts and dinners that I made…I called her my little experimenter. However, now that Andy and I had to start keeping track of her carb intake to dose her insulin I started to notice that she would have roughly 10-20g at breakfast, 15-25g at lunch, and about 15g-20g at dinner. Usually her snacks were free snacks which meant anything under 10g that would not spike her blood sugar.
Training day had arrived! We showed up and went directly to the CDE’s office. She downloaded Abbie’s meter and her drew her A1C. She was at an 8.7! I almost fainted. Oh well it is just a number, we will work on it, I remember thinking. So, Renee, our new CDE, went over what we had been doing, what Abbie had been eating, how many carbs, and I remember her stopping when she found out she had only been having around 60g a day. “That’s all she is eating, Ms. Eger?” I remember looking at her and saying yes, is that a problem, she is full. She stepped out and Dr. R came back in with her. The next 30 minutes was a session of us getting scolded for a couple of things.
Let me take just a moment to say that I know that as an Endocrinologist your job is to teach your patients to care for their autoimmune diseases or to teach the parent of your patients to care for them. Dr. R is a fantastic doctor and I know that during these sessions when it seemed he was scolding myself or my husband for certain things he only had my daughter’s best interest in his mind. You will learn later, that we ended up parting ways later on after too many scolding sessions and I discovered that I didn’t want my daughter treated like all of his other patients because to me she is different and her care should be different. Ok, back to the session…
First this scolding session consisted of asking us why we were allowing our 10-year-old to give herself her own injections, with our supervision of course. If you remember in the beginning of our story, Abbie had a lot of anxiety over taking shots. So, one day she asked if she could try doing it herself and maybe it wouldn’t hurt so bad. Umm, yea, of course. Anything to ease her anxiety and pain. So, we got Rufus out, we practiced first a few times and then she did it. And we never looked back, as long as either her father, myself, or another capable and trained individual was present it was okay with me because her anxiety faded away. And that was the explanation I gave him. To him we were making her grow up too fast, giving her too much responsibility and we needed to take it back from her. I just looked at him with a dumbfounded look and remember telling him that I parent my house and how I allow my child to administer her medications was my choice as long as I was supervising it…next?
He came prepared for the next one though and laid out pamphlets on why children need carbohydrates to grow and develop properly. He told me that Abbie was definitely not getting enough carbs a day to grow properly if she was only getting 60g a day. That she needed that amount in a meal minimum. I was horrified. Not at the amount of carbs, but that over the past year I might have been hurting my kid. I couldn’t see it though, she had grown…a lot actually… she was flourishing in school, but what did I know. I felt defeated and so did my husband. I almost started to cry but I held it off and just said okay we will give her more although I didn’t know how to do that considering it wasn’t as if I forced it on her. The foods she ate were her choice, she liked to eat what I ate.
Before he left he said he would like to show us some pump options and some CGM options so that when we come back in October we could have one picked out, ordered and get started on that. I was too sidetracked with the whole carb thing to even pay attention to anything else. So, I remember asking Renee to give me all the information on the pumps for us to look over at home. I figured we could sit down and look it over and get back to her.
For now, I needed to figure out how to feed my kid 60g of carbs at every meal when she was used to having 10-20g at every meal and being overly full with that.
Ugh…when I look back at this I think I should have fought harder to make him understand because as you will soon read, increasing her carbs was a huge mistake. One that not only I realized but Abbie realized very quickly and made us back her carbs down again.