Sunday, January 3, 2016

Looking back at 2015: the good, the bad and the ugly.

I haven't posted about our evolution and control in a while... With the start of 2016, here's a quick summary of what 2015 had in store for us.

The good

Our control was roughly in line with what is has always been. HbA1c tested at 5.2, 5.4, 5.6 and 5.4... Since Max's puberty is in full swing, I guess this can be seen as good news. For most of the year, our policy has been "free carbs, as long as one acts one way or the other to keeps things in decent range". A rough estimate of our carbs intake (we don't keep accurate counts) should between 200 and 400 grs per day depending on the level of activity. Our hyper/hypo percentages are OK, especially given the horrors one sees in Artificial Pancreas clinical trials. We're still on MDI and we don't see any reason to move to a pump at this point.

The tennis season started well, with significant wins against stronger players but we decided not to play the Summer season for reasons that will become clear in the next paragraphs.

The bad

If I had to single out a single factor of chronic stress, I would - like many other parents, I assume - rate the awful "adolescent/teen" mindset. Previously, Max would not always know which decision to take: small mistakes could send him above 300 mg/dl or below 60 mg/dl and he would correct one way or the other. This year, on paper, he knows most of what he needs to know but he doesn't necessarily act on it, especially if he has other things on his mind.

And , unfortunately, we saw the emergence of a new situation that complicated matters further. Around April, his insulin sensitivity seemed to increase tremendously. While a 50 to 60% decrease would previously be adequate for sports, we started constantly going low during exercise. At one point, more than 150 grs of uncovered carbs were unable to keep him in a correct range. That's of course a very annoying problem given the fact that carbs absorption is itself rate limited. We reduced insulin  even more, to the point of suppressing it totally before some training sessions. While we could maintain BG levels with zero rapid acting insulin, cramps and muscle aches show up when insulin level gets too low.

At the same time, his Levemir/Lantus needs started to decrease: from a maximum of 22 units (split 14/8) of Levemir per day in February, we are now down to 5 or 6 units of Lantus in the evening and are still fighting occasional early night lows. We tracked a few days better than we usually do and it turns out that 1 unit of Novorapid currently covers between 30 and 40 grams of carbs. A total daily dose of 10 to 15 units in a 65 kg teen is low, very low. Add a bit of exercise into the mix and we have seen less than 10U TDD. I'll get back to the possible causes later.

The ugly

That extreme insulin sensitivity is, in practice, extremely difficult to deal with. If we make a single 1 unit dosing error, we have to correct with 30 to 40 grams of carbs. Don't time perfectly, take a bath, move a bit too much during the fast insulin activity period... and you are headed for trouble. We had a couple of severe hypos, very unusual for us and, as you all know, scary. In both cases Max was able to correct orally: he was conscious, able to swallow without risks and well aware of his situation... but he was unable to move or act by himself. It definitely seems that his left motor cortex (controlling the right muscles) is the first to suffer in case of hypoglycemia.

Add a pinch of adolescent mind to the mix and you are headed for trouble...

The day started normally enough, with a night a bit higher than usual (given the insulin sensitivity issue, I am less inclined to correct aggressively), a reduced dose of Novorapid in prevision of the morning PE class that resulted in a couple of hours above 200 mg/dl. So far, not ideal, but nothing dramatic.

Very quickly, at the start of the PE class, a steep drop. At that point, a reasonable T1D kid would have told the teacher "I am too low" and stopped until BG was in an acceptable range. Max chose to keep running: soccer with friends must be more important than a stupid hypoglycemia, right? I suspect that, for the next couple of hours, he ran on his glycogen reserves and exhausted them. He managed to bring himself up again. It could have been smooth sailing from there if he had remembered to reduce his normal meal insulin dose. But he did not.

At 3:30 PM, Max left school with a couple of friends and headed home. At that point, he was already falling extremely quickly: it took him 35 minutes to go from 193 mg/dl to 40 mg/dl, a sustained fall of about 5 mg/dl.min. Without taking the CGM delay into account and the slope of the fall (hard to blame him), he decided to correct around 90 with 10 grams of carbs (he ended up needing more than 100 grams to stabilize). But at this point, he was probably already hitting the 40ies, with no slow down in sight. At that exact moment, rapid insulin activity is peaking and, 3 to 4 hours after the exercise that depleted reserves, his muscles and possibly liver are stealing all the carbs they can grab...

What had to happen happened. He froze and his right side became spastic. His friends hailed the police (that's the "good" side of the terror era, finding a policeman is easy). Informed by his friends that Max was diabetic and needed sugar, one of the policemen sacrificed his coke. A teacher who had noticed the commotion called an ambulance and I received the phone call every T1D parent dreads... "your son his in an ambulance, any hospital preference?".

Looking back at the incident, it was not that bad. No glucose perfusion, no glucagon. Max was out of the hospital after two hours, a coke, some dextrose tablets and some chocolate. But it was definitely a reminder that we are constantly living on the edge. What would have happened if he had been alone? That question will remain, for a long time, on my mind.


Going forward

At this point, I am not going to speculate to much on the root cause of our insulin hyper sensitivity. The rough outline of our thought process has been so far

partial recovery/delayed honeymoon? While I'd love that option, it is excluded by his complete lack of C-Peptide.

digestive trouble leading to sub optimal absorpion? That is not out of the question since he is celiac, but he does grow and gain weight normally...

other endocrine issue such as Addison disease? His cortisol and ACTH levels have been tested and are in acceptable range, if lower (for cortisol) than it was before. No specific anti-bodies have been found. Dynamic tests are scheduled tomorrow.


Let's be honest: I am not looking forward to 2016. Not looking forward to another year of constant worries and tedious routine. Not looking forward to any new information that would explain our issue and further my understanding of his problem. I have no need for the "Have a wonderful 2016" style of wishes. 2016 will not be good, no matter how we slice it.  I just hope it will not suck big time.

Therefore, here are my 2016 wishes for the T1Ds and caregivers reading my blog.

I simply wish that your 2016 sucks a bit less than your 2015 did...

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