It’s felt a very full few days. Sometimes in families there is a time when it seems things are changing quickly. The children outstrip themselves. The adults make plans. Some kind of change is in the air.

We had another clinic appointment yesterday, and despite the week of highs after our holiday, E’s HbA1c is again very good, the lowest yet, well under 7%. Just how lucky we are in this achievement was brought home to us when we both heard another teen’s HbA1c, same day, same clinic: 12%.

Living with diabetes requires an incredible vigilance, and, as the consultant pointed out yesterday, gaining control requires a kind of obsessive nature, a perfectionist bent. How true for E.

Growing with diabetes, growing up with it, requires quite a different set of coping mechanisms. And some are winners in it, and some have Herculean sized struggles with it. This is the hormone story: insulin (a hormone), brings blood sugar down. Cortisol and adrenaline — both typically sky high in adolescents, and especially in driven adolescents (check) — raise blood sugar. Unpredictably. Of course.

Growth hormone, as I’ve mentioned before, also raises blood sugar. And is only secreted at night. What I did not know is that it is secreted at all different times of night, in response to the body using up the glucose present in the blood. As the blood sugar drops, growth hormone has the chance to kick in. So it is secreted in a pulsating type pattern. Unpredictably. Which is why over the last six months we have had these astonishing runs of highs in the night, and then just when we want to do something about it, boom, they stop. We have been completely unable to predict or grab them.

The consultant’s advice for these adolescent highs was very good: correct the random highs (perhaps caused by cortisol and adrenaline) as you find them. Don’t worry overly about the growth hormone highs in the middle of the night, because some of the effect may well settle and drift off by morning. So try to get the morning reading okay, but stress less about the night time one.

He also confirmed that E had grown over an inch since June, and another inch in the preceding three months. So we all had a bit of a celebration and a sigh: we are in the middle of his main growth spurt, which may  last another year. Hold on for the ride.

It is clear that E and we seem to have the mentality to constantly ‘be after’ diabetes and control without it wrecking our lives. He tests as a matter of course, without protest, and is keen to keep in range if at all possible. His most upset times come when he runs high — not just because he feels bad, but because he is hugely, hugely aware of how bad this is for him.

In that way and so many others, we are lucky. We are able to carry all this, to hold it, without it taking an incapacitating toll on us.

But how easy it is to imagine a family, many families, where people just aren’t put together like us. Their lives are not as settled, not as happy in other ways. They’ve not had the support of a good diabetes team in the early years. The child or teen just wants to pretend it’s not happening. And the numbers spiral up, kept just within the need the hospitalisation.

I’m not saying anything that almost all of you know, and may even be experiencing. It does make me desperate though, desperate for help with this: how can all families be expected to essentially cope on their own? How can every person be expected to understand and be motivated to look after themselves? They can’t and UNDERSTANDABLY SO. It’s dire. But the price is so high.

E was speechless when he realised that the teen across from him had an HbA1c which was almost twice as high as his. I could see a helplessness mounting in him. How does this happen? We both felt chastened, and left feeling quite humbled. And for me, a little heartbroken too.

***

A little kitten vid. Cleo calling and playing with them. After a while she realises one is still in the box. Hmm… goes to check it out, and they all (eventually) follow… Our bundles of good and silly stuff amongst all the sobering thoughts…

Advertisements