Mostly I’m pretty positive about diabetes. It could be worse. I’m thankful that Ainsley never got terribly sick before we caught it. I’m thankful she was such a champion when we were learning to poke her a million times a day. I’m thankful for our pump and our cgm and that we have the ability for me to be home and give her good care.

But there are the times when it’s really challenging to be positive. As a stay-at-home parent of a toddler, you never get away from diabetes. My child doesn’t go to school. I don’t go to work. There are no babysitters, no trained caregivers. There’s my husband but he works full-time so he’s not in the role of primary diabetes manager.  Even when he’s home, I’m on call.

This is what is so hard about diabetes. You can learn to prime a pump, measure insulin, give injections, count carbs, calibrate a cgm. Any of you could learn those things if you had to. You learn it, you get used it, it becomes part of your normal life. The hard part is that you can never get away from it.  Any burden becomes crushing that is never alleviated. When that feeling reaches critical mass, we call it diabetes burnout.

I’ve been aware of this, although we haven’t really been dealing with diabetes for that long at 8 months.  We’ve tried to stave off full burnout in little ways – going out for dinner with a girlfriend, going to a party across the street (so we can still walk back and forth to do care), running to a movie when Ainsley’s very stable and my mom can watch her for a couple of hours.  Greg has his woodworking. I try to lose myself in my books.

What never occurred to me was staving off burnout for Ainsley. At 2 yo, she seems mostly oblivious to all of this. She runs and plays and has no idea what her blood sugar means or even what diabetes really is. I have completely taken for granted that we wouldn’t have to worry about how she feels about diabetes for a while yet.  More fool am I.

When she was first diagnosed, we were the luckiest parents in the world. She didn’t cry for injections. Never batted an eyelash for her first infusion set. Just looked at me when I (crappily) inserted her first Dexcom. Over time this has been changing. She has become the most resistent to Dex insertions to the point that we finally broke down and got a prescription for EMLA numbing cream and have been trying to retrain her that when we use the cream, the insertion doesn’t hurt.

Meanwhile she has also been  becoming more resistant to pump site changes. This came to a head yesterday. Ainsley got her sister’s flu. She had been complaining all day that her site was poking her. She eventually broke down and started crying over it and I decided something was wrong and it needed to come out. She now fears a new set so much that she didn’t want me to remove the old one even though it was hurting her. It didn’t help that she had a high fever, hadn’t eaten, and felt like crap. This turned into an hour-long drama with tears all around. I finally got the old set out only when Greg came home and held her while I forcibly removed it. It doesn’t hurt to take it out, but still I HATE IT when we have to forcibly restrain her to do something with her diabetes.

This was sufficient trauma that she ended up in my lap while I rocked her and she cried herself out. Then she looked at me with teary, trusting eyes and a sincerely hopeful expression and asked, “Mommy, if we wish on a star can we make diabetes go away?”

A few weeks ago we took our kids to Disneyland for the very first time. This was somewhat ambitious of us as Ainsley has only been diagnosed for 8 months, she’s only 2 years old, and she’s still wildly honeymooning.  Still, I have learned over these months that we cannot live in fear and that, as a parent, I will not allow diabetes to take the experience of life away from my daughter. Thus our mantra has pretty much become, “If we can’t get rid of you, then you’ll just have to come along.” And off we went.

We didn’t go without some serious preparation, however. The week before we left, I combed our support group archives, diabetes forums, Twitter. I read all the tips and tricks and, most of all, I read about mini-g. I had heard about it before and thought to myself, we really need to get set up for that,  just in case but I’d never done anything about it.  Before we left, I filled some extra glucagon prescriptions and we loaded up an insulated pack with regular insulin syringes and the glucagon. And thought no more about it.

I don’t know if it was the travel or the flu the week before or the alignment of the stars and moon but pretty much as soon as we set out on that trip Ainsley’s BGs went all to hell. High highs, plunging lows – we were on the BG Scream Machine.  Our first day in the park, I cried as I stood in the middle of Adventureland because I was watching the Dex instead of my daughters’ faces, and I couldn’t get Ainsley’s sugars under control no matter what I did, and I knew that she couldn’t feel well at a 400 or a 40, and diabetes was ruining the most anticipated trip of all time.

Eventually, a little bell rang in my mind and said, “Remember, when you’re riding the BG roller coaster and can’t get off, the basals are probably really wrong.”  Thank god for that small voice of experience. At her age  - and honeymooning –  Ainsley’s basals rarely stay the same for any length of time and on occasion we have seen this kind of thing happen when there was a big change. I decided to go whole hog and ratchet the basal way up because we were only in Disneyland for 3 days and I was damned if I was going to lose another minute. We reverted to known foods and low carb and that night I stayed up all night watching the Dex and tuning the basals. It’s important to note that I couldn’t have done this without the Dex. Not at all. It would have taken way longer and wouldn’t have been safe. I <3 CGM technology.

The next morning as we packed our diabetes backpack for the day, we agreed to pre-load some syringes with glucagon. Just in case. Off we went and we had a much better day. The new basals (double and triple her old settings) were performing great and we were seeing much less variability.

That night we had reservations for a (very expensive) dinner at Ariel’s Grotto which afforded us with premium seating to Ellory’s Great Disneyland Dream – the World of Color show. It’s a very cool outdoor show in California Adventure Park all done with giant fountains and light projections.  The dinner at Ariel’s Grotto is prixe fixe; I was prepared for this and had researched what would be served as much as possible. I knew a huge dessert tray would come out at the end. I even asked the chef if there was any possibility of carb counts – no go. Ainsley had been doing so great all day that we decided to just let the kids go whole hog and eat themselves sick. Ainsley was beside herself with joy – she ate tiramisu, white chocolate film strips, chocolate cups filled with mousse. And I sat by watching, tacking on another 10 carbs here, 20 carbs there, until we were done. We went off to wait for the show to begin.

The Dex was showing Ainsley to be in the 200s which I thought was pretty much to be expected and not too bad, actually. She and a bunch of other children were running around playing while we waited. Something about her behavior must have been off, some small thing that triggered in my subconcious and I thought, something’s not right. We tested and instead of being in the 200s, she was 90, now with double arrows straight down on the Dexcom. Not immediately a cause for panic, we checked the IOB  - 2.5 units onboard. For Ainsley, this is a very large amount of insulin. An amount so large that I didn’t think that at 90 with double arrows down we could catch it up fast enough with food, definitely not without a truly horrible low first. Greg and I looked at each other and jumped into action. I grabbed her up, he whipped out the glucagon, and in less than 10 seconds she was back on her way.

We tested and tested. The glucagon pretty much stopped her descent right where she was and held her steady throughout the show. We were able to hold our kids and enjoy the experience with them just like a major event hadn’t almost happened. It worked beautifully.

It chills me to think what might have happened. Without the Dex, we wouldn’t have immediately known her rate of descent. Without the IOB feature on our pump, we wouldn’t have known what a whopping huge amount of insulin was acting in her body. Without the DOC, we wouldn’t have been ready to go with the mini-g. That night could very easily have ended with her in the emergency room instead of oohing and aahing a spectacular light show.  We count our blessings.

Since then, we really feel like a load has been lifted. The fear has been taken out of glucagon, and that is no small thing. If you are thinking of trying mini-glucagon, the recommendations are as follows (and use a regular insulin syringe):

• ages 2 years and under: 2 units
• age 2 to 15 years: 1 unit  for each year of age
• age 15 years and older: 15 units

Disclaimer: I am not a medical professional. Information I share here is not intended to replace the advice of your doctor or other medical professional.

This is a quickie post as a precursor to my next post on our mini-g experience. This is for all my peeps who are new to glucagon.

When your child is diagnosed with Type 1 Diabetes, one of the many items you receive that day is a Glucagon emergency kit. You might think of it like an epipen, which is used for people with, say, a severe peanut or bee allergy. Glucagon is what a T1D uses in case of a life-threatening low blood sugar. The kit looks like this:

The way it works is that you get the syringe and stick it in the little vial. You depress the plunger and squirt all the liquid into the vial, which you then shake and generally mix up. Then you draw the liquid back into the syringe and inject it in the upper tush. Voila. Now you know what to do if the situation ever finds you.

At diagnosis they tell you that you will probably never have to use it. But you should carry it with you just in case. You should have one in your purse, your car, both cars. Upstairs, downstairs, at your neighbor’s.  We were told only to use it if Ainsley was seizing or became unresponsive, and that we should immediately call 911.  It built up a pretty intense fear of a situation where we would ever have to use glucagon. This was unfortunate because, as we now know, glucagon is a great tool in the diabetic’s arsenal.

I understand why the guidelines are given the way they are. Hopefully, you wouldn’t ever have to use glucagon and, if you did, many people might be in an understandably panicked state. But the major reason for those guidelines is because the amount of glucagon in that vial would bring back a very large adult person from the brink of death. It’s overkill, particularly for a child. Instead of just bringing the blood sugar back to an appropriate level, a full vial of glucagon would send a child’s BG into the stratosphere.

Thankfully, intelligent and wonderful people out there in the world thought about this and devised a technique known as mini-glucagon or mini-g to address this problem.  Using this technique, you do not withdraw the full amount of glucagon from the vial. Rather you use a regular insulin syringe to withdraw a very small amount – specifically, 1 unit for every year of life – and administer that instead.  In this way, you can give timely, appropriate help without overdoing it and causing a completely different problem.

This knowledge has been circulating in the DOC for some time; more and more people have been sharing their stories of how they have used mini-g with great success, and, interestingly, for more situations than just a horribly low blood sugar. I won’t get into all of that here. Instead, I will just say I <3 THE DOC UTTERLY for sharing all of this with me. I read it, applied it, and it saved us during an unexpected situation. That story coming up next.