We live in a fairly small town. It’s not tiny, but having grown up in San Diego…it feels itsy bitsy sometimes. For example, we don’t have a single escalator in our town. There’s only one movie theater, no malls, and one high school. There are 36 blocks to the length of our main street. Short blocks, not like big city blocks. So apparently, we don’t attract and support the need for a local pediatric endocrinologist. Even if you add in all the t1D kids from our neighboring towns…still not enough.
Our three options for pediatric endos all involved at least a 3 hour drive…plus an hour to account for traffic, parking, and making sure we are on time for appointments. We chose the one that had a mall next to it (and an incredible reputation for medical care). We were released from the hospital on Tuesday March 31st and had our first endo appointment Friday April 3rd.
We kept a log of what we fed Anna, what her blood sugars were, and how much insulin she received. We had been told to give her 1 unit of insulin to every 20 grams of carbs. We also had been told a correction factor where 1 unit of insulin should reduce her blood sugar by 100 mg/dL. Her target blood sugar was set to 120 mg/dL. We’d also been told to check her at least once in the middle of the night.
We followed all the rules and as you can see above…getting into target range was very difficult. I didn’t understand why we weren’t getting consistent results or reaching target blood sugars. I didn’t know at the time just how much number-crunching new diabetes takes to dial in dosing. And just how many puzzle pieces we were still missing.
We went to our first endo appointment armed with our log, a list of questions, and an ice chest full of carb-counted baggies of food since we’d be gone all day. That first trip out of the house as a new t1d family was quite an adventure. Much like traveling with a newborn for the first time. The packing list was not left to chance, it got written down on a sheet of paper and carefully double-checked before leaving the garage. The oh-shit scenarios that we planned for were double what we usually plan…basically we packed as if we needed to outlast the Donner party.
At the appointment, we were greeted by many nice people. A head endo, a fellow endo, a certified diabetes educator, a dietician, a social worker, and a trialNet coordinator. Whew…we met a lot of people that day. All very nice and patient.
They took a look at all our records from the previous few days of blood sugars and meals. Like a magician, they came up with a new carb ratio 1:15 and a new correction factor 1 unit drops 50 mg/dL. They also upped her daily lantus to 11 units from 8 units. They kept the same target blood sugar range of 100-120 mg/dL.
We asked a bunch of questions like “if this happens, what should we do or expect…” Frustratingly, it seemed like almost every answer was given with a big fat asterisk of “it depends on the person, you’ll learn.” I really thought that they’d hand me a big flow chart with those little “yes” and “no” arrows pointing to the next decision or action item. Apparently, that does not exist for type 1 diabetes. I’ve tried several times to sketch it out and still can’t fit it all in a page.
Worse, they said a bunch of new variables that I hadn’t considered. Stress, emotions, weather, hormones, illness, medications, food, travel, sleep…a seemingly unending list of things that could affect her blood sugars and how they behave at any given time. How would it be possible to know how to dose insulin correctly with all of these factors going on?
We were a nervous wreck. The assurance I really wanted was to find out how we could keep her safe. How to keep her from going low, passing out and having seizure. As a parent without any diabetes experience, I imagined it as some very quick process that she’d be fine one second and then suddenly shake and drop to the floor. I felt like Anna was a ticking time bomb about to GO LOW at any random moment. We asked them about that. “How fast does low blood sugar happen? Will we have notice? Enough to do something about it?” Unfortunately, they still hedged their answers with “it depends” and we were left feeling quite vulnerable and fearful.
At the end of the appointment, we asked them for any apps that they felt were helpful. They mentioned the Figwee app (5 out of 5 stars for that recommendation!). We’d also been using the MySugr app already to help us record what was on her paper log.
Oddly, the endo did not mention a continuous glucose monitor (CGM) during our appointment. So I asked about this nifty device I’d seen on instagram (I’d taken to searching instagram for the #t1d hashtag to see if there was any useful t1d info). @SugarStalking had posted a photo of a watch she was wearing and the caption said “Thanks to technology for letting me watch my son play soccer and knowing he’s safe #t1d #dexcom #cgm #nightscout”. The watch face showed a blood sugar measurement. I knew I had to have the same system, as soon as possible.
The endo said something like “oh, dexcom. Yes, if you’re interested in that…sure we can write a prescription for it. I think getting it set-up takes a little bit of coding familiarity, but if you want to do it…sure.” [Little did I know that that would be the most important part of our visit that day. They started the paperwork for a CGM that day and we had it by April 29th.]
We had a surprise for Anna at the end of the day. Her best friend that had moved away, that she missed terribly, had secretly driven with her mom to meet-up with us. As we got up to leave the appointment, we said to Anna “There’s one last thing we haven’t told you. We have a surprise.” At which point she immediately started crying big tears and said “I don’t want any more surprises. They’ve all been terrible this week. Please, no more surprises.”
Opps, parent fail. We recovered quickly and reassured her this was a good surprise. That Maddie was coming for a visit. Right then. We were meeting them in 10 minutes, having dinner together and walking the kids’ favorite stores at the mall. It was the first time we’d seen true happiness in her since diagnosis. I’ll never be able to repay the kindness of Jill and Maddie for agreeing to drive hours to meet us. To give Anna that human touch, BFF comfort.
So the short summary of the appointment:
Disappointment that the t1d how-to answers weren’t more definitive, easy to understand. No t1d cliff-notes?
Mystery how they were adjusting the doses.
Wondering why it’s not standard-of-care to suggest CGM?
Grateful for their time and attention.