Ever since our daughter was diagnosed with T1 just after her 3rd birthday we have been very aware of how “lucky” we are to already have experience with my T1. Anytime there is a crisis in your child’s health, you – the parent – are going to be overwhelmed, emotional, vulnerable, confused, scared. Parents who must face the diagnosis of T1 are also “taught” about carbohydrate counting, insulin dosing (yup, this medicine that will save your child’s life every day could easily cause his/her death), hypo/hyperglycemic symptoms, emergency glucagon kits, all the “stuff” going on in the body that we can’t measure but will still impact the blood sugar, ketones, ketoacidosis, overnight testing, how/when/why to test and what to do with the results. And, they have to “learn” this before they leave the hospital so that they can start to keep their child alive. All while they are seeing their precious child in a new light — so thin (funny how much thinner they look after the diagnosis than in the weeks leading up to it), so exhausted, so fragile. And, while they are wondering, “is this our fault?” “what should we have done?” “was it because we didn’t force him to eat his vegetables?” “why did it take so long to realize she was this sick?” Not exactly the ideal conditions for learning anything, never mind something that will be of daily importance.
I recognized the Bear’s symptoms fairly early (though it took some doing to convince anyone that I wasn’t just being paranoid) so while her bgs were high enough to indicate T1, she was nowhere near ketoacidosis. They even considered not keeping her in hospital overnight. We only stayed one night and could answer all the nurses’ questions that they ask to see if you have “learned” the basics before they started teaching us. It is harder to give your child an injection than yourself, but it was easier for me than for most parents who have never given an injection at all. Both I & the BHE were better at counting the carbs in her hospital meals than the floor staff and we started talking about pumps right away. So, we were lucky compared to so many families – we had a head start on the experience and knowledge that really only comes with time & living it.
But, it is bizarre to talk about being lucky to have T1, or to have a child with T1. I had worried since before my pregnancy about the possibility of our child developing T1. “That’s pretty rare,” said the OB/GYN, the genetic counselor, my endocrinologist. The odds weren’t really any higher than someone in the general population being diagnosed. Still, here we are. Med folks always marvel at how lucky it is that the Bear sees testing bg, etc. as “normal” since she has seen me doing my own for her whole life. And, how lucky that she will not have the experience of feeling like she is the only one in the world with diabetes – even when she goes through her I-hate-my-mother seasons, I will always know firsthand what it is like to wear an insulin pump, have low blood sugars. Yeah, that’s “lucky.”
Now, this weekend, we are about to move the Bear onto the Dexcom G4 CGM. I have been wearing a CGM for a few years – started with the Abbott Navigator, then the Dex Seven Plus when the Navigator fled the states, and the G4 since it came out. The trending info from a CGM can be invaluable — the ability to head off a low before it is symptomatic is huge. Making treatment decisions based on one number, a single point in time (not to mention one that might be 20% off in either direction #stripsafely) is at least 50% luck. BG of 100 and rising is very different than 100 and falling. I wanted to get the Bear onto a CGM before she started public school since it could help the school staff make better decisions – especially with a young child who hasn’t started to recognize/communicate her own body feelings or symptoms. Older kids might report that even though their BG is 90 they are feeling kind of low, but our kid isn’t there yet. She can be 50 and not be able to tell that she isn’t feeling well.
But, last year we had put her in a G4 pediatric trial at Joslin and it wasn’t pretty. The study docs & nurses were great but for whatever reason, we had a terrible time with the adhesive and no amount of prep, tape, iv3000, bands seemed to help. So, in the space of a few hours the poor kid had 5 or six sensors inserted in her tiny belly. The trial required that she wear two sensors and carry two receivers, one blind and one not. Even after the incredibly long first day when they finally got both to stay on for the required amount of time to get through calibrations – we lost the blinded one at home less than a day later. It was still enough for us to continue to participate and she wore the non-blind one the remainder of the time with much retaping & securing. Long story short (or only slightly less long), she was determined never to go near a sensor/monitor again regardless of the fact that I wear one 24/7.
For quite a while I have held off pushing the issue since she has been doing well at school and it seemed unfair to ask her to wear one more device that she didn’t absolutely have to. But, I know that the information that the CGM will provide could really help give her a healthy advantage and mean that she didn’t have to sometimes miss out on parts of gym or recess because the nurse is trying to see if she is going up or coming down. Finally, in the face of a potential change in our insurance coverage for DME, I had the endo put in the request and got the approval, figuring I would get the device here and then decide how to get her to wear it.
A really helpful model for our future has been Scott Benner’s blog at Arden’s Day and his twitter presence at @ArdensDay. Scott’s daughter Arden is a glimpse of a future that we would be “lucky” to see for our Bear. She is able to have much independence at school through using her glucose meter, CGM, and texting her dad. She seems to know a lot about how to take care of herself and then has the tools to check-in and get validation from Scott so she can feel most confident and get on with her schoolwork and having fun. I love that. Both Scott & @StaceySimms really helped on Twitter recently when they talked about when the parent’s decision about what is best for the child trumps other feelings. As Scott said (paraphrasing since too lazy to track down the tweet), “If Arden had a broken arm she wouldn’t get to decide if she was going to have a cast.”
So, before I started this post, I put some lidocaine cream on the Bear’s arm (and, my god, it is tiny), and we talked about putting the monitor on. She chose her arm since that is where I usually wear mine. And she chose the same arm that I have mine on right now. She doesn’t want to wear it, or at least doesn’t want it inserted, but seems to get that it isn’t a choice at the moment. So, we’re “lucky” that she has me as an example, right? Now, it’s time to do the insertion and I’m probably more anxious than she is.
Wish us luck…