I recently began thinking about the most liberating thing that I learned after my son was first diagnosed with Type 1 diabetes. I have always said that it was to take life four hours at a time. That did help but before I could learn that, I think I had to learn one more important lesson…how his insulin worked.
Once I understood how my son’s insulin worked both of our lives took a dramatic change for the better. As I have said many times, when my son was first diagnosed he was in DKA and given hours to live. I knew that they gave him insulin and that is what helped him to survive. That connection stayed with me long after we left the hospital. I knew that he had to have insulin injected to live but I didn’t understand the roles of insulins that he had been given. This lead to battles and frustrations on both my part and that of a confused two-year old.
At diagnosis, my son’s doctor believed in using the most up to date insulin regimens. That meant that he was given NPH and humalog for his meals. Again, I didn’t really understand this in my newly diagnosed, muddled mind. I just knew that he had to have insulin to live. I had to give him both insulins and he had to eat what the dietitian told me.
In fairness to my dietitian, she also told me that if I wanted I could learn to count carbs and feed my son only what he wanted and give him just the insulin that he needed for that meal. What she said made sense. Not all bread was created equally and therefore not requiring the same amount of insulin. Despite knowing that on an intellectual level I was blocked on an emotional level. He must have all of the insulin I was told to give him in order to stay alive. This blocked thinking lead to struggles and trauma for everyone involved at each mealtime. Breakfast could last until lunch and supper could easily run into his bedtime snack. There were tears on both sides.
One day I found an email support list. I asked for help trying to make my son eat. A woman, who went on to become a great friend, replied to my email instantly. She said “Don’t force him to eat and just don’t give him his humalog.”
For whatever reason when she said it (or wrote it) everything clicked! The NPH had a peak. That was what the snack times were all about but the humalog was a rapid acting insulin meant to cover his meals. No meals? No problem. No insulin. He would always he his small snacks so that was not a concern. Smaller meals? Well my dietitian had told me how to count carbohydrates and figure out his carb to insulin ratio so that was okay too.
My world changed completely…and so did my son’s. We no longer fought about meals. If he didn’t want to eat he didn’t. There were no more special meals or catering that I hated to have to do. I could treat him the same way as I did his older brother. In other words, he could be a kid first and a child with diabetes second.
This also meant that we could handle birthday parties in a whole new way. I learned the carb counts of most party food and he could enjoy meals with the other kids. He could have cake! Most cake was around 25g CHO which was his snack amount so I would save it for 2pm (which often was when they settled down enough to have some anyway) and he could eat with everyone else.
Learning how his insulin peaked and what it was used for was the most liberating thing I could do for my son and my own sanity. Once that was under my belt, I could work with the other factors. I could break life down into the four hours of rapid acting insulin life. One major hurdle was overcome. A small piece of my sanity saved!