Purple Because Aliens Don’t Wear Hats

If you accidentally bolus 25 units of insulin when only 3.5 units were needed and each unit of insulin will reduce blood sugar by 50 points while every 10 grams of carbs would normally require 1 unit of insulin and your blood sugar was 300, keeping in mind fast acting insulin takes approximately 20 minutes to be active and remains in the body 3-7 hours with a peek between the 2nd and 4th hour, how many carbohydrates should be consumed and over what period of time should said carbohydrates be consumed in order to avoid convulsions, coma and death?

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The facts:

At approximately 10:30 pm PST my daughter checked her blood sugar. The result was 300.

She wears a t:slim insulin pump. She input the data (the blood sugar of 300) into the pump.

The pump completed the required calculations to determine the amount of insulin needed to lower my daughters blood sugar.

My daughter pushed the required buttons (really its a touch screen pump so there are no buttons) to deliver the required amount of insulin.

The t:slim pump delivers insulin very slowly – in (I believe) 0.3 unit increments. They say it is a safety feature – and honestly it would have been had my daughter noticed her nearly deadly mistake early enough.

After approving the suggested bolus on the pump my daughter clipped her pump back to her pajama bottoms and tucked in for a good nights rest.

Minutes later her insulin pump alerted her to a problem. Basically it had delivered 25 of the 30 units of insulin that was required to complete the suggested (and approved) bolus.

I am 100% certain my daughter had a total WTF moment although I wasn’t there to witness it. I just know she came downstairs saying “Mom Mom Mom Mommy Mommy Mom”

Her pump is programmed to never give more than 25 units of insulin at one time (meaning for one bolus). The suggested bolus was 30 units of insulin – thus the pump gave 25 and then asked the user (my daughter) if she wanted to give the remaining 5 units. Clearly we need to reduce the number of units that can be given at one time to perhaps 15 units but that is just one lesson we learned in the small hours of last night. 

What happened? 

Well technically exactly what the endocrinologist at my daughters last appointment said could happen and why she (the endo) refuses to prescribe the Tandem t:slim pump to children (including and possibly especially teens). BTW – my daughter didn’t care for me reminding her of that conversation with that endo. She (my daughter) doesn’t like it when others may have a valid point (I’m not sure where she gets that from).

Basically – my daughter input the 300 blood sugar as carbohydrates rather than as a blood sugar. Her pump is programmed to calculate insulin needs based on blood sugars and total carbs consumed. The amount of insulin needed by my daughter to lower a blood sugar of 300 to 150 is 3.5 units. Had she input the 300 blood sugar as a blood sugar all would have been well. However, she put the 300 in as carbs. Her pump is programmed to bolus (that means inject) 1 unit of insulin for every 10 grams of carbohydrates; which is why her pump wanted to bolus 30 units of insulin.

There are a number of screens on the pump a user has to go through in order to initiate insulin delivery. Each screen provides the user with some information such as how the pump calculated the suggested bolus, confirmation that the calculations appear correct, confirmation that the user wants to deliver the suggested amount of insulin, an opportunity to change the suggested amount, again a confirmation before it will deliver and finally a screen showing what t:slim calls the ‘Bolus Splash’ which also displays the amount of insulin being delivered.

So just as the endo suggested could happen with kids and teens (and likely adults too) – my daughter put in the 300 blood sugar as carbs and then in a matter of less than seconds tapped: ‘DONE’, ‘NEXT’, ‘YES’, ‘DELIVER’ – and voila! the pump initiated the delivery of enough insulin to kill my daughter within just a couple of hours whilst we all slumbered away.

*quick side note for those that may not be familiar with how diabetes can kill a person – people with type 1 diabetes (my kids) must take insulin to stay alive because their pancreases don’t produce it. There must always be a balance between the amount of insulin taken and the amount of carbohydrates consumed (carbohydrates are not just sugar – they are potatoes, rice, bread, fruit, milk, yogurt, pasta, etc). Too much insulin will lower a persons blood sugar and cause hypoglycemia which is typically anytime a blood sugar is below 70. A normal blood sugar is between 70 and 145 for people who do not have diabetes. The lower the blood sugar the more danger a person is in. Most people will lose consciousness, convulse, and possibly die with a blood sugar less than 20 but some people can be symptomatic long before a blood sugar of 20 or less.  If my daughter had not alerted us to the accidental overdose her blood sugar would have dropped to less than 20 within the first hour or so. It would have dropped so quickly based on the amount of insulin she delivered she may not have become aware of the drop in time to take action. 

What did we do?

Well for starters this…

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Banana, Teddy Grams, 2 juice boxes, mini butterfinger, mini 100 grand, full peanut butter and jelly sandwich (she was eating the other half)

The above picture shows approx. 125 grams of carbohydrates. She really needed a minimum of 200 grams but the child could not consume another bite.

She was exhausted. I sent her to bed and told her I would wake her if she needed to consume more. (IF?!?! – of course she would but I didn’t want to alarm her)

I checked her after 30 min. (11:00pm)

She was still in the upper 200s. Insulin isn’t really active until after 20 – 30 min so that was expected. She had eaten a number of fast and long acting carbohydrates (referring to how fast the body absorbs the sugar and/or converts carbohydrates into sugar) so I wasn’t sure what her blood sugar was going to do. I mean I knew it was going to go down but I didn’t know by how much or how fast.

11:30pm – blood sugar 118, woke her and had her drink 30 grams of juice.

It was at this check that I realized I had let slide a very important step in preventing an insulin overdose from ending tragically. I forgot to suspend basal insulin delivery. Basal insulin is insulin that is almost continuously delivered – a small drip basically to mimic what a functioning pancreas does for people without diabetes. Obviously my daughter did not need her basal insulin delivery at that time. Thus, I suspended all basal insulin for the next 4 hours – that should have been done at 10:30pm when my daughter made us aware of the accident. (BTW – this is only valid for people/kids who wear insulin pumps – those that get their basal insulin via an injection have no way of suspending the basal insulin)

dammit.

At 12:00am – blood sugar 124, gave 30 more grams of juice. She did not want to drink the juice this time and I actually had the first of two ‘drink the juice Shelby’ moments. That sucked.

12:30am – blood sugar 131, gave 15 more grams of juice.

1:10am – blood sugar 108, 15 more grams of juice. The second ‘drink the juice Shelby moment’

1:45am – blood sugar 145 – hallelujah she was going up. At this point the majority of the insulin, if not all of it was out of her system. I was still nervous though. It isn’t really an exact science when it comes to how long insulin is active. Each body is different. Thus I grabbed a pillow from the couch and climbed into bed with her. I felt safe enough to close my eyes at that point but I didn’t want to be far off. Prior to that I had watched a number of DVRd shoes afraid to close my eyes even for an instant.

My alarm woke me at 2:30am – blood sugar 162. Fine.

I stayed in her bed until my alarm at 6:00am.

Her blood sugar this morning 274. I think perhaps I could have turned her basal insulin back on at 2:30am but would you have?

She doesn’t remember any of the juices although she saw the juice box carnage on her desk. She woke with a slight stomach ache – well duh she drank 6 juice boxes in the middle of the night.

As a side note – it dawned on me sometime around 1:00am that I could have possibly used small injections of glucagon rather than juice boxes. I have never used the ‘mini-glucagon’ before – never had a reason to. Clearly I need to school myself on mini glucagon doses. (Glucagon is a hormone naturally produced in a persons liver as a last natural defense against hypoglycemia but it has also been synthesized and is typically used in emergency situations when a person experiencing severe hypoglycemia is not conscious. It has also been used in situations similar to ours last night or during periods of illness when carbohydrates can’t be consumed.)

Had it not been for the alert that the pump still had 5 units of the suggested bolus to deliver, or had my daughter ignored the alert this story would not be being told with sarcasm and purple hat wearing alien jokes. This story wouldn’t be being written the morning after while I wait for my youngest to finish getting ready for school. Had the pump not alarmed or had she ignored the alarm when it did alarm, this morning would be a huge black hole that no amount of expletives, sarcasm, tears or cyber hugs would bring me back from.

Diabetes is hard. I know sometimes many of us in the diabetes community make it look easy. We share pictures of bolus worthy food, laugh at the word ‘high’, share random silly moments with diabetes humor, climb mountains, run across Canada, win pageants, Nascar races, Indy races and Ninja Warrior challenges, send our kids off to college and sleepovers, walk, run, and bike. Oh and then there are these folks over at Connected in Motion who are just all kinds of awesome. We do all of these things and often we make it look easy peasy, but diabetes is hard. It is 24/7/52 FOREVER. Yes, I believe there will be a cure and there are always new treatments and tools being developed that make managing diabetes easier. But for right now it is forever, it is frustrating, it is dangerous, and it is damn hard.

I get a lot of kudos from friends, relatives and strangers who stumble on my blog posts. My kids get a lot of kudos too. It’s always nice to hear ‘you are a strong mom’, ‘you are so brave’, ‘your kids are so lucky’, ‘your kids are amazing’, etc. But I have to be honest – last night rocked my world. I was scared – more scared than I’ve ever been. With all my involvement in the diabetes online community, with all the books and blogs I’ve read, with all the conversations with Dfriends  – I forgot some of the basics – suspend the pump, give mini-glucagon. 

I am not sure how I feel about Tandem and t:slim right now. I don’t blame them or the pump but I also don’t blame my daughter. I can understand anyone doing just as she did. It was an easy mistake and even I’ve jumped through the multiple screens when I’ve given my daughter a correction bolus in the middle of the night. The danger is due to the exact reason the pump is so wonderful – ease of use. My daughter loves her t:slim pump and I want her to have the tools she deems best – it’s her diabetes. But honestly this event – it never would have happened with an Animas pump. Animas pumps will do the calculations to determine the proper insulin dose but prior to delivery the user must ‘scroll’ up using arrow keys to match the suggested bolus amount to the amount being input. Thus, the user can’t simply tap buttons without paying attention to the calculations and suggested bolus amounts like they can do with t:slim. I’m not sure about Medtronic or OmniPod pumps. Medtronic pumps don’t require the user to input the suggested bolus like Animas pumps do but the steps needed to get to the point of delivery are longer and more cumbersome than with t:slim. We’ve never used OmniPod or played with one so I have no idea how their system works.

When considering an insulin pump do research, find a way to get your hands on a pump to play with it, don’t just go with what your doctor wants you to go with. I still recommend the Tandem t:slim pump. I believe in it. It is the easiest pump to use, has the smallest profile of any tubbed pumps, has a rechargeable battery which is better for the environment IMHO (although stay tuned for the latest in a serious I think I might call ‘oops she did it again’), and holds 300 units of insulin which is important to many. I do not recommend the t:slim for younger kids. It is sooooooo easy to use and clearly at times too easy that I personally don’t believe it is the best pump choice for kids under 12. AGAIN MY HUMBLE OPINION.

I also fully support and recommend Animas pumps. Currently my boys both use the Animas Pings. Fabulous pump for all ages. There is a rumor the Animas Vibe will make its debut in the USA very very soon – the VIBE combines the Dexcom CGM (continuous glucose monitor) with the Animas pump so that the CGM results can be seen on the pump screen versus carrying a separate receiver. Sadly it means no more ping technology (the ability to program a bolus using the ping meter remote without touching the insulin pump – comes in handy for blood sugar corrections on small children after the witching hours).

Hug your kids. Hug your spouses. Love fiercely. Stock up on juice. Eat chocolate. Laugh as often as you can.

Oh hey also maybe do me a solid and go like the Stick With It Sugar Facebook page.

Parenting In The Time of Smartphones

I was against smartphones for the kids. Truly I was. I thought no good would come of it. There is so much danger to be found in a device that basically holds all the world’s knowledge, countless cat videos (as well as many not so innocent or entertaining), and all the evils of social media (and the good of SM).

There is really no way of effectively locking down the content available on a smart phone for kids. Not that I’ve found at least.

All kids need to make bad choices is opportunity and curiosity. <<<<That is the honest truth.

Ask my friend – her twin 11-year-old boys were wondering what ‘teabagging’ was. They found out.

How did I cave on the smart phone thing – simple ‘effing diabetes’.

I used an app on my phone to calculate insulin doses (this was when my daughter was taking daily injections rather than pumping). The app was wonderful. Basically I input all her ratios and when she needed to dose she just told the app how many carbs she was consuming and what her before meal blood sugar was. The app calculated the dose based on saved ratios and IOB (insulin on board – amount of insulin still active from a previous injection). It was basically all the brains of an insulin pump without the actual insulin and robot parts. The app was a wonderful tool. It tracked all her doses and we didn’t need to use pen and paper to log diabetes info. Thus after a bit we agreed to getting my daughter an iPhone so she would have the application as well. Worst mistake I’ve made. It spiraled from there – each of the boys in turn begged (demanded) iPhones when they were nine years old because my daughter got one when she was nine. We did what most reasonable, educated, loving, parents do – we surrendered.

It was all just fine for many years. The kids basically use their phones to play games, text me or a few friends, and call me or a few friends. Well except when they don’t. When instead they set up instagram accounts and flickr accounts and twitter accounts and downloaded snapchat, and KIK, and Vine and ???? who knows what else. We try to limit it – we have iTunes password protected. They can’t download and application without me or their dad putting in the password. The thing is both their dad and I hadn’t realized they had a window of time after the password was put in to download more crap without our knowing – or make in-app purchases resulting in iTunes charges of $45+.

I’ve been to the internet safety talks at schools. The presenters do a great job at scaring the crap outta parents but also providing a list of well know ‘evil’ applications to watch for. Applications that mostly exist to corrupt minds, allow for sexting, bullying, and to deceive parents. The problem is with every application designed to help protect our children by monitoring their apps or in the time it takes for government agencies to identify troublesome apps,  another half-dozen applications are launched that will corrupt our children; and trust me, our kids find them well before us or the government agencies find them.

Each time I attend an online safety talk I return home hell-bent on locking down the smartphones. This is always met with complete acceptance and understanding from my kids of course – said no mom ever. Instead it is met with defiance and outright rebellion “Why don’t you trust us?” “I’m smart enough to know better!” “It’s my phone!”

After much protest I do get my way. For a time. Then they change pass codes and I am locked out again.

I’m done with it.

LOL- all of thee above was written back in July. Ask me if my kids still have their smart phones. Yes.

I am sure back in July I had some idea of how this would be connected to parenting kids with diabetes and the tools we use to help manage diabetes. Hell if I remember what that point was now.

However – I will take this time to say this. Since the 2014/15 school year has begun I have taken away my oldest kids phones a few times. Yup I have sent them out the door to the bus with NO phones. No way for them to text me blood sugars. No way to ask questions. No way for me to send reminders. Guess what – they returned alive and well. Occasionally there were high or low blood sugars and

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they handled them. Sure there was a time when my son ran out of insulin and needed to use the office phone to call me. Yes, schools still have office phones. In fact most schools have classroom phones too. So remember a moment ago when I said my kids had no way of informing me about blood sugars or discussing issues – yeah scratch that. It’s true I couldn’t send them 342 reminders to check and bolus but somehow they figured it out.

Ok I know my kids are older than many. They are 15, 12 and 10. We’ve had diabetes in the house for nearly 8 years. We have some experience under our belts. Not all my readers can say the same. I encourage every family to do what works best for them and I ask every family to avoid judging families that do things differently.

I currently have both adult friends and friends with cwd who use the CGM in the cloud thingy or nightscout – honestly I am not entirely sure what it is all called. If that is what works best for you and/or your kids then Woot Woot.

I have friends who require their kids (of all ages including high school) to share every blood sugar via text while away from their parents and many of those kids likely appreciate the support.

I have friends who barely give diabetes a thought – they trust their teens and pre-teens to do what is necessary and only get involved when asked by the teen.

Parenting styles will vary in nearly every aspect of raising kids. I honestly don’t care if you breast-fed, bottle fed, allow endless TV, buy M rated video games, schedule playdates, attend church, tell them about Santa, or how your family chooses to manage diabetes. I do care if you vaccinate – please do – Jenny McCarthy and those that blindly follow the anti-vaccine ideals put others at risk daily. The studies that linked vaccines to autism have been proven false and were complete lies with falsified study results.

So basically this post started out by talking about the evils of smartphones and kids and took a sharp turn to land at the stupidity of the anti-vaccine movement. Sorry.

Confessions of an unstable parent: I look for reasons to ground my kids from their phones. shhhh.