I May Owe Him My Daughter’s Life

As a parent of a child (ok multiple children) with diabetes there are times when I have missed small hour alarms and slept through the night after some major correction bolus at bedtime only to wake in a startled panic holding my breath until I see my child breathing the next morning.

I haven’t ever met a parent of a child with diabetes that hasn’t experienced the above scenario.

Thankfully ‘dead in bed’ is not as common as we train ourselves to believe. Fear is insidious. In the early years after diagnosis we micromanage as much as we can to keep our kids safe. It is normal for us to do so. When my kids were younger I wouldn’t tell them the hours of sleep I missed to keep them safe. I still don’t tell them. Once my youngest overheard me talking about how tired I was after getting up or staying up (I can’t remember which, but I think I wrote about it a few years ago). My poor little man heard me say I was exhausted because of misbehaving diabetes and it broke his wee little heart. Then my heart broke into a bazillion little pieces.

Enter Dexcom. Even the first Dexcom CGMs were the bomb. Dexcom made my kids safer. Granted the early devices didn’t connect with bluetooth on their phones and they couldn’t share their numbers with me but it was a start. Dexcom is all about innovation and improving the lives of people and children with diabetes and by default improving my life as a parent of children with diabetes.

The most recent Dexcom device is the Dexcom G5. No longer do my kids have to carry a special receiver. Their numbers go directly to their iPhones and then the numbers are shared remotely with me on my phone. I can always know their numbers and sometimes my adult friends who use Dexcom G5 share their numbers with me too, especially if they are traveling alone and want a safety net.

So this last July while at Children With Diabetes Friends for Life my teens met other teens and had the best week ever. One of those teens became close with my oldest child and my daughter decided to share her Dexcom G5 numbers with him. That means he always knows her number and receives alerts if she is going dangerously low. At the time I thought it was sweet. I loved that she had a friend she could trust and confide in and count on.

I don’t require my kids to share their numbers with me although they do. That is to say I don’t provide consequences if they don’t share but sharing is highly encouraged.

Some teens might be concerned that sharing constant numbers with their parents would increase the “nagging” or micromanaging. I haven’t found that to be true with my kids but it is a common concern of teens with CGMs. <<<<this is important because maybe your teen won’t wear a Dexcom G5 because they don’t want a parent always watching, but what if they would wear it if say instead of a parent (or in my case in addition to) another friend received the numbers and low blood sugar alerts? That friend doesn’t have to have diabetes. It can be a Bff that doesn’t know the first thing about diabetes but would happily be a safety net for their best friend.

So anyway – my daughter shares her Dexcom numbers with this new FFL friend, who incidentally lives an entire continent away – 3000 miles. This friend would occasionally see low blood sugar alerts and text my daughter to be sure she is doing something about it. That’s cool and helpful. Less nagging from me.

A few weeks ago I went to bed with my phone on silent unknowingly.

The next morning I saw a number of notifications from Dexcom on my phone. A quick glance at my daughters Dexcom graph showed me that around 3am she had dipped below 30.

I didn’t know. I didn’t hear an alert since my phone was silenced.

The Dexcom graph showed that she was in a safe range at the time I woke up. Thank goodness but what about the middle of the night? Did she wake up and treat? Did her body release enough glucagon naturally to keep her safe?

No.

She didn’t wake up to her multiple low alarms. Her body was likely frantically pushing natural glucagon but probably not enough to keep her safe or alive.

It was her friend.

Her friend 3000 miles away heard the alarms at 3am alerting to my daughters severe low blood sugar. The Dexcom didn’t even give a number just “Low Glucose”.

This friend called my daughter no less than a dozen times until she woke up and treated the low.

This friend may have saved my daughter’s life.

Dexcom is the only CGM that allows blood sugars to be shared between devices across continents and around the world.

I may very likely owe my daughter’s life to a teenager and Dexcom.

Am I being dramatic?

Yes.

But is it warranted?

Yes.

I do not work for, get paid by, and I wasn’t asked by Dexcom to share this story.

I am sharing it because I believe in Dexcom, I believe in the power of friendships, and I believe that sometimes as parents we should consider the best ways to keep our kids safe while allowing them the freedom they so desperately desire. If your child is not enthusiastic about using a CGM that would broadcast his/her numbers 24/7 to you consider compromising by inviting them to find a friend to share with. There are also settings on the Dexcom application that your child can set which limits the visibility of numbers to those he/she shares with. For example the application can be set to hide graphs and numbers but send alerts for lows or extreme highs.

Talk to your child about using Dexcom and how it opens doors for increased freedom and peace of mind while also improving diabetes care, including less blood sugar checks.

oh – and after that event I made sure that my daughters friend had contact numbers for me in case he is unable to reach her.

It really does take a village to raise a child. Sometimes that village extends over 3000 miles.

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My daughter (blue hair) with some of her FFL including the young man who caught the low. Incidentally they are wrapped in blankets provided by Dexcom at the family movie night. Literally wrapped in the warm fuzzies Dexcom CGM provides.

 

Dear Newly Diagnosed,

A friend just sent me a text telling me of her friend in the UK whose son was just diagnosed with Type 1 diabetes.

He’s 11. If he is a wizard he’ll be heading off to Hogwarts in a month and no doubt Madam Pomfrey would fix him right up. Perhaps there is a potion similar to Skele-Gro that can be used to grow new beta cells.

If only.

The text from my dear friend regarding her friends sweet boy is just one of three I’ve received in the last few months. I’ve connected via the phone with the other two moms but since this friend of a friend is in the UK, phone calls are more costly so I told my friend I’d write this post so she could share it (my friend asked if she could share my blog with her friend). I haven’t written in some time so my recent posts may not make sense or be relevant to a newly diagnosed family.

Why didn’t I write ‘a parent of a newly diagnosed child?’

Because honestly when a child is diagnosed it is a family affair. I mean no disrespect to those living with diabetes, I’m not suggesting those of us with fully functioning pancreases will ever truly understand all that it is to live with diabetes. We won’t. Just like those who have diabetes that don’t have children with diabetes may never truly understand us. The best we can do is be empathetic and try our best to be supportive of each other.

Crap I’ve already digressed and now the new parent is wondering when the bloody hell I will get to the point.

So here goes, if you are a parent, grandparent, family friend, or sibling of a recently diagnosed child, I am sorry you have reason to read this.

There will be many well-meaning folks that will do their best to console you. They will say things like:

“At least it’s not cancer” Yes, cancer is bad. Very bad. And yes at least diabetes is not cancer, but right now diabetes is a huge scary monster that has, in your mind, stolen your healthy child. Thus, unless the folks who say ‘at least it’s not cancer’ have had cancer, lost someone to cancer, have diabetes, or love someone with diabetes, they don’t understand the difficulties of a lifetime diagnosis but they mean well.

“It could be worse” Things can always be worse so this phrase can be used for anything. Stubbed your toe, could be worse, could have whacked your balls on the corner of the table as you tripped, thank goodness it was just your toe. Still your toe hurts and knowing it could be worse doesn’t make you feel better. Again, well-meaning people say stupid things because they don’t know what else to say.

“Oh my granny had diabetes, lost her leg, she did.” People say this in an attempt at empathy. They are trying to connect to you. They are trying to say they understand. They do not know that when a person with diabetes or a parent of a child with diabetes hears of amputations, complications or death due to diabetes we immediately think of how that could happen to the ones we love, or themselves if they have diabetes. Of course pwd/cwd (people with diabetes/children with diabetes) and those who love them don’t need or want these reminders. That B roll is often played in our minds. Thankfully it becomes a re-run that we skip over as we watch those we love with diabetes thrive.

You will also get a lot of questions and you will get the same questions repeatedly from family and friends for the first bit after diagnosis and it will be both annoying and comforting. Annoying because you are answering the same questions again and again but from different folks. Comforting because those that ask questions care about you and your child and that will let you know you have support. Just keep in mind it is a new person asking each time unless you have some self-absorbed neighbor that asks the questions but only as a courtesy before they start telling you about their most recent colonoscopy. You know the type – the type that just wait for their turn to talk. You should totally toilet paper that neighbor’s house, but then you’d have to listen to them whine about how their house was toilet papered. (If there is no such thing as toilet papering a home in the UK – it is when full rolls of toilet tissue are tossed up and around trees and shrubs in the garden.)

This is already excessively wordy. Here is a picture of my dog to break up the wordiness.

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There are many ways to manage diabetes. There are insulin pumps that are worn 24/7/356 that infuse insulin into the body. Most types of pumps have tubbing that connects to the body via an infusion site that is moved every 3 or so days. Most newly diagnosed pwd/cwd spend at least a few months taking daily injections. This is often referred to as MDI (multiple daily injections). There would be one injection of a long acting basal insulin that helps maintain sugar shifts due to hormones and the normal functions of the body. The other daily injections are taken when the pwd/cwd eat or to correct a high blood sugar. Using an insulin pump means no long acting insulin since the insulin pump continually infuses insulin to simulate what a working pancreas would be doing and then is also used to bolus insulin at meals and to correct high blood sugars. The amounts of insulin various based on amount of carbohydrates consumed, current blood sugar, and insulin sensitivity factor.

All pwd/cwd check their blood sugar multiple times a day using a blood glucose meter. A tiny poke of the finger to draw a tiny droplet of blood and 5 seconds later a little device tells you a number. It is not a report card. It is not a good or bad number. It is a just a number. The number will help you decide how much insulin is needed or if carbohydrates are needed. I stress the not a good or bad number because small children will attach their self-worth – shoot adults occasionally attach their self-worth to that number. Imagine if 5-10 times a day you were told you were good or bad. So, it’s a number and a decision is made based on the number then the world continues to rotate on its axis.

Obviously if you are a parent of a recently diagnosed child or a recently diagnosed adult you know about bolusing insulin and checking blood sugars. I included those bits for extended family and friends who did not get a crash course about diabetes care in the hospital. But the reminder about good vs bad is for everyone.

Below are a list of insulin pump manufacturers if you are interested in learning more about insulin pumps. There is also a link to the Dexcom page. The Dexcom is a continuous glucose monitor. It monitors blood sugars 24/7 for the length of time it is worn. My 3 cwd use the Dexcom G5. They typically wear each sensor or 14-21 days (per manufacturer it is only approved to be worn 7 days but very few people follow that). My two boys use the Animas Ping insulin pumps. My daughter uses the Tandem T:Slim. We have never tried the Omnipod insulin pump. Yes they are listed in order of our preference although Animas and Tandem are equal in my preference. Animas, Tandem, and Medtronic all offer an integrated pump (Continuous glucose monitor data can be seen on pump screen) but our family choses not to use integrated pumps since CGM technology advances faster than pumps and we like to be able to use the most recent CGM tech. Also the Enlite CGM that is used with the Medtronic pump is substantially inferior to Dexcom technology per user experience and data submitted to FDA. There will be a new Tandem pump released by year-end and if I understand things right it will be able to be updated with new CGM tech as it comes out.

Pumps:

Animas 
Tandem

Omnipod

Medtronic

Continuous Glucose Monitor: Dexcom

I know much of this seems overwhelming and the pump/CGM stuff may be too much to think about right now.

If you or your child was diagnosed recently know that there is a grieving process.

Receiving a diabetes diagnosis is hugely life changing. As a parent I have received 3 such diagnosis. Each time my reaction has been different in some ways but the same in many others. Each time I have had to allow myself to grieve for the future I had pictured for my kids. I do believe my kids can do everything people without diabetes can do but they will always have to do so much more along side it. So I grieve for their loss of freedom and their loss of completely carefree days and nights. People with diabetes climb mountains, compete in professional and olympic sports, race cars, become rock stars and actors, serve in public office, are school teachers, truck drivers, doctors, nurses, mail carriers, and more. You or your child should never consider the possibility that you/they couldn’t be anything they want to be.

There will be sleepless nights when diabetes behaves badly with high or low blood sugars and as a parent you stay up or set an alarm to check your child’s blood sugar while he sleeps. I strongly suggest sharing this responsibility with a spouse. I took on all diabetes care myself when my youngest (first one) was diagnosed since I wasn’t working outside the home. Sleep deprivation is a bitch. It causes weight gain and can lead to depression. Share the responsibility and take care of yourself or you will be of no use to your child or anyone else.

I feel like I’ve rambled on far too long.

Again I am sorry you have reason to be reading this.

I would like to tell you it gets easier.

It doesn’t. But, you get stronger. Your child gets stronger.

A side effect of diabetes in children is they (the children) often grow up faster. Facing ones own mortality can do that. To reduce the negative side effects of diabetes I encourage you to keep doing everything you were doing before. It means more planning and it likely means trusting others (after a thorough tutorial) to care for your child. Make diabetes second or even third to everything else. Say good morning and hello before asking for a number. Focus on saying yes to as much as you would have said yes to before the diagnosis.

In case you missed it in my profile. I am not a doctor or medical professional. I am a mom of three children with diabetes. My youngest was diagnosed at age 2 in 2007. My oldest was diagnosed 2 years later at age 9 and my middle child was diagnosed 4 years after that at age 11. Don’t worry – multiples is rare. We are just special. I am not an expert at anything. I have not always followed the advice I’ve shared. I only can share it now because I learned the hard way what didn’t work.

My last piece of advice is to find others like you. If you are a parent find other parents. If you are a newly diagnosed adult find other adults with diabetes. Online connections count. You can always find me via my Stick With It Sugar Facebook page and you are always welcome to email me through this blog. I will do my best to answer questions or connect you with smarter people that can answer questions I can’t answer.

To quote Christopher Robin (AA Milne)

“You are braver than you believe, stronger than you seem, and smarter than you think.”

 

 

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.

 

 

That’s Not The Point

I try really hard to give my kids ample independence.

We compromise frequently on when I think they should be checking blood sugars and when they think they should be checking blood sugars. I try very hard not to be too needy of a Dmom – in other words I resist the urge to constantly ask “whats your blood sugar” “did you check” “did you dose” “be sure to dose” “please check your blood sugar”. Of course I still ‘ask & tell’ but I assure you not nearly as often as I feel the urge. Sometimes the kids are happy with their freedom, other times they want help, and then there are the times that despite my best attempts at a hands off approach I’m still not hands off enough for my teen.

So here’s a story I want to share.

My daughter would prefer not talk about diabetes to any of the kids at her middle school. She is still trying to figure out who best to be friends with at a new school, tossing in diabetes is both stressful and embarrassing. Thus she went through a few weeks where she simply wasn’t checking her blood sugars unless she felt funky. That wasn’t the original agreement – the deal was 3 blood sugars a day, mid morning, before lunch and before getting on bus to come home. She agreed to that. She didn’t follow through. When I discovered the discrepancies there was an argument. After voices were lowered we worked out a new compromise. By this time my daughter had started on the Dexcom G4 CGM (continuous glucose monitor). The new deal agreed on by both of us was if Dex was within 20 points at breakfast she could avoid the mid-morning check, still check a blood sugar before lunch and if that was within 20 points she could skip the pre-bus check (BTW – her bus ride home is nearly 25 minutes).

She agreed to the new compromise, all was well for another week. Then her sensor came off – that sucked because numbers were spot on but the tape failed. We have not put on a new sensor. Thus she was asked to check BS 3 times a day until we put on a new sensor. For 5 days I have suggested we put on a new sensor. She loves her Dex and misses it but she has been very busy – homework, outings, TV whatever – always I would hear “not this minute, later, I promise”.

So here we are at yesterday. I had packed her a chicken caesar wrap (corn tortilla, caesar dressing, romaine lettuce, roasted chicken). She loved the wrap I sent for lunch and asked for one when she got home. I happily obliged and at the same time showed her how I made it. Before she sat down with her wrap I reminded her to check BS. Ten minutes later I found her making a second wrap, I giggled and simply said well don’t forget to dose for the second one too, glad you enjoy them.

Fast forward a couple of hours – my middle son wanted a haircut. My daughter wanted to ride along so she could get some school supplies from target. My youngest asked if we could get some Five Guys and Fries. All loaded into the van we were off. I had put each of the boys Dbags in my purse. I didn’t ask daughter if she had hers because every time I did ask she replied with “I never leave without it, relax”.

Haircut – check, Five Guys – check for me and boys, daughter wasn’t hungry (she did already eat two wraps) so she just munched on fries. I reminded all kids to dose and headed to Target.

We wandered Target for a bit picking up more than school supplies. Daughter found me to get money for a Starbucks cookie crumble thing. Fine. “be sure to dose”

Lazy evening at home finishing up homework, watching TV and daughter face-timing with friends. Around 9:30 she came down to say goodnight, “goodnight baby – hey check your BS and correct if you need to please”.

Midnight – (well after midnight) after chatting with a new Dmom on FB for sometime I  was finally headed off to bed. Checked Sugarboy – sailing smoothly in the upper 80s, checked Middles also smooth sailing in the low 100s. Went to check daughter – searched high and low (not a pun) for her Dbag while her cat mewed at me. It was no where. Damn. Back downstairs to check counters and couches. Nothing. Out to van to see if it was forgot there. Nope. Back upstairs to check her bathroom and bedroom again – NOTHING. WTH? Back downstairs to look again. Surely it wouldn’t be in her backpack – she has consumed food multiple times since returning home. Still I checked. nope – but wait – she didn’t empty her lunch box, darn it I have to do it because I also realized I hadn’t started the dishwasher and her containers will need washing. Low and Behold – her Dbag. Thus – no blood sugar checks had been done since noon when she ate lunch. No pre-bus check, no pre-wrap check, no pre-fry check, no pre-cookie crumble check, no bedtime check and still not wearing Dexcom.

Back upstairs expecting to find some awful number.

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Nope – 123. Well crap. I mean great, but crap. The 123 means she managed to dose correctly for all her food but without any blood sugars or a CGM.

The ‘123’ is not the point though.

Things could have gone badly.

While never actually lying to me she left me to believe she was doing what needed to be done – did what I asked and reminded her to do.

Dumb luck doesn’t win prizes. 

This morning I mentioned to her how long it took me to find her Dbag at night. She shrugged it off. I didn’t try to make her lie by asking “hey what was your BS last night before bed?” because I don’t have time for those shenanigans. I asked her to please be more diligent and told her there would be no hanging with friends on Friday if she doesn’t do the bare minimum we had agreed to. Luckily she never asked me what her midnight number was even though that’s not the point.

I started this post – crap I don’t know when – sometime last week. It was mostly done just needed to upload a picture and think of some witty ending.

Skip forward (well backward now) to later that day, after school, after homework, after dinner. Her meter was on the counter along with used test strips. I wasn’t being nosey. I just felt like I should check her meter. Her last check was 5:49pm just before dinner – cool. Her check before that – 5:45am – crap. 12 hours AGAIN. No mid morning check, no pre-lunch check, no pre-bus check, no pre-afterschool snack check and no Dexcom. All the rules dismissed despite the soft reminders that very morning.

My quiet questions to her regarding the missing BS checks were not met with humility. Instead I was accused of being too protective, too nosey, too everything.

So how can this turn around?  Do I just wait it out for the next 3 years hoping that my very smart, very kind, very responsible daughter will emerge from the chrysalis of teenage years unscathed and ready to fly?

God I hope so.

In the meantime – Dex is back in business.

High With A Chance of Ketones

I went to bed at 10pm last night.

All three kids safely within range with no active insulin.

I didn’t set any alarms for night checks, no reason to worry.

This morning I got up made coffee and packed lunches.

Middles got up and took a shower, checked BS (117) and ate breakfast. All was well.

Sugarboy got up, took a shower, checked BS (149) and ate breakfast. All was well.

No sign of Sweetstuff. I went up to get her moving guessing teenage girl ‘sleeping in’ issue. She was curled up still asleep. I nudged her and then poked her finger. As the meter counted down she mumbled “my site fell off”.

Huh? When?

She shrugged. She didn’t know when she just found it dangling.

(The infusion site that normally is stuck to her body that allows her to get a constant insulin drip was not attached.)

BS 418. Crud.

I ask her to get up and check for ketones. To check for ketones (something caused by lack of insulin – not a good thing) one must either pee on a stick or use a ketone meter to test the blood for ketones. We don’t have a ketone meter. She peed on a stick.

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Massive ketones. Not good. Chest hurts, feels nauseated, head hurts, pale.

To clear ketones she needs insulin, STAT. Plus time to start pushing fluids.

New infusion site, new insulin, yogurt consumed.

Moments later Sweetstuff is in the bathroom vomiting.

Call left on attendance line at school – Sweetsuff will be out today.

An hour later still large ketones. Sleepy child. Head hurts. Chest feels better. BS 271

Like me, when her head hurts she desires a hot shower, always makes head feel better.

2 hours later still large ketones. Still sleepy child. Head feels better. BS 201

3 hours later moderate ketones. Child is asleep on the couch. BS171

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Diabetes is stupid.

PS. Dear FDA – please hurry the heck up and approve Dexcom G4 for use with those under 17. Had she been wearing a CGM (continuous glucose monitor) this would be less likely to happen.

She Did It Herself

There was a recent post on Diabetes Mine by Will. You can read it and all the great comments in response to it HERE (Link removed because I am suspicious the post was written only to generate page views and put money in Will’s pocket. Basically Will called our kids ‘spoiled brats’ because we do our best to keep them alive including checking blood sugars at night. If I’m wrong Will is welcome to leave his thoughts as a comment on this post.)

So last night I tucked my kids in with kisses and hugs and went off to read in my bed while I waited for my hubby to get home from Denver. He was due home within the hour. I hadn’t brought glucose meters upstairs with me since I’d planned to get up and visit with my hubby. Instead I fell asleep reading. (Not the books fault – I had been up till 2am the night before so I was exhausted.)

I woke up around 2am to find my dear husband asleep beside me. I realized my mistake and got up to get glucose meters. Both kids were slightly high at bedtime and I had corrected them before sending them off to bed. I had that panicky feeling that maybe the correction was too much. Checked kids – Sugarboy was within range. Sweetstuff was still a bit high so I gave another correction.

That panicky feeling usually keeps me awake for sometime and last night was no exception. I went back downstairs and played on pinterest for a half hour (I love the Geek category – those are my people) after being amused regarding all things Dr. Who I fell asleep on the couch.

Around 4am (I think) my dear daughter came down and gently woke me to tell me her pump was out of insulin and she was gonna fill it. I vaguely remember this.

Chad woke me when he came down to leave for work around 7am but I remained on the couch listening to his footsteps and wishing him a good day.

This is what I found on the table when I got up around 7:30am.

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That additional correction I tried to give in the middle of the night – she didn’t get all of it and I didn’t hear the alarm on the pump alerting me. Turns out her pump didn’t have enough insulin to give her the entire correction or basal insulin for the rest of the night. It took 2 hours of alarms to wake my daughter so she could fix the problem.

She not only filled her pump with insulin, she checked her blood sugar and gave a correction. Score one for my beautiful daughter.

This was her at 8am.

1photoLook I know not all parents of CWD check sugars at night. I don’t do it every night. Maybe I would do it every night if I went to bed when my kids do but I’m up till midnight most nights. I check them before I go to bed and the alarms I set to wake me are dependent on what their numbers are when I go to bed.

Below are my numbers and plans but honestly its like Bennet of YDMV says – Your Diabetes May Vary. My  guidelines may not (and likely would not) work for all CWD – some kids react faster than others to corrections, some react slower to fast carbs, some go high/low depending on the cartoon print on their pjs. Please don’t use my numbers as your own guide. Now I’m worried I shouldn’t even share them. Shoot. Ok just promise you will not use my guidelines – mine are specific for my kids and how I know they will most often react. Seriously – these are kid specific – I don’t even use the same guidelines for both of my kids.

Sweetstuff –

Between 85-150 with no working insulin (no insulin given 2-3 hours prior) – do nothing, sleep soundly.

Under 85 – treat with fast 15 fast carbs – wait. check. repeat if necessary. If within range with no working insulin – I sleep soundly, if there is insulin still working I wait it out if less than 1 hour worth of insulin or set an alarm if longer.

Between 150-250 – check working insulin, if there is IOB (that’s ‘insulin on board’ – it’s a pump thing) I do the math – 1 unit will generally reduce my daughters BS by 50 points. If the working IOB will bring her into range I sleep soundly. If not I give additional insulin and sleep soundly (even with no IOB the amount of the correction is small enough I still sleep soundly).

Above 250 – check IOB and give correction if needed – I set an alarm. Anytime I give a correction of more than 2 units I get up. Insulin/hormones/the phase of the moon – these can all toy with diabetes and larger corrections make me more nervous at night.

Sugarboy is similar but I’m more cautious/conservative with him. He is more sensitive to insulin and 1 unit can drop him at minimum 100 points. He is also more active than my daughter, always on the go. He spends upwards of 2 hours a day on the trampoline and a good deal of that time is within hours of bed.

Also something to note – I recheck any reading over 300. You may have heard about the Strip Safely campaign. Basically current glucose meters can have a 20% variable. That might not mean much if a PWD number is within range – a 100 could be a 90 or a 110. However once those numbers are upwards of 300 that variable can be scary. 300 could really be 240 to 360 – Considering those 120  points mean 1.2 units of insulin and my boy drops 100 points per 1 unit – well it can get scary once the BS gets really high and I am dosing insulin based on a number that could be WAY off.

Click HERE to find out more about how you can help with the Strip Safely campaign – your support can help us all stay safe.

Ok that last bit about Strip Safely got me a bit off track but its an important message.

My message this morning is don’t let anyone tell you that night-time blood sugar checks are unnecessary or that you are taking on too much or that you are spoiling your child. Night time blood sugar checks are a personal family decision. Of course you should talk to your child’s doctor about night-time checks but also follow your gut. My son’s endo told us we only needed to check at night for the first two weeks after diagnosis. My son was 2. He was using Lantus for his basal insulin. Every night for over 4 months he would be in the 40s by 2am – despite decreasing his Lantus dose multiple times. It was not the fault of the Lantus – he was just very sensitive to insulin and still is. What if I had stopped at the two-week mark?

When our daughter was diagnosed we were told the same thing, she too dropped low every night.

The other side of the coin – don’t let anyone scare you into doing night-time checks if not doing them is working for you. Trust your instincts. I have yet to meet a parent that normally doesn’t do night-time checks that would send their kid off to bed after a huge correction without either staying up or getting up to check. Do what works for your family and trust your kids too. We’ve been lucky that my daughter will normally feel a low and get up. My son has never woken up when he was low to alert us.

I am very proud of my daughter for being so independent last night. It is a great relief (but not a surprise) that she is able and willing to do what she needs to do to take care of herself even in the wee hours of the night/morning. I will tell her this as soon as she gets out of bed – it after 11am and yes she is still in bed – yea teen years and summertime.

Thanks for getting through all the babbling and long stints of text. Here is cute cat picture as a reward.

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PS- I really hope the FDA approves the Dexcom G4 CGM for kids soon. My kids both participated in a study with the Dex G4 and it was the best week of sleep I’ve gotten in over 7 years. I’m not saying I didn’t have to get up – but when I did get up it was because the Dex alerted me. I slept soundly otherwise. Our current  insurance will not approve anything that the FDA has not approved thus no Dex for us until FDA says its ok for kids. (Although we all know it is as effective with kids as it is with adults and a great deal of kids use the Dex)

Afraid of the Night

Ever been afraid to go to sleep?

Perhaps its nightmares that would keep you up? Something like Freddie Cruger haunting you? Perhaps you hear the song – 1,2 Freddies coming for you. 3,4 Better lock your door, 5,6 grab a crucifix, 7,8 stay up late. 9,10 Never sleep again.

Honestly as a teen the Nightmare on Elm Street movies scared me more than any other horror movie ever has. Just thinking of Freddies burned face and clawed hands gives me the heebie jeebies. And that song – along with images of a little one on a tricycle. Ugh. Well if there was a chance I was gonna sleep tonight – that chance has passed. I didn’t sleep much in the weeks after viewing any of those movies.

Or – perhaps like me prior to my move to CA, the weather channel has kept you up. Hours watching thin red and yellow blobs move across the screen while tickers race below alerting residents of various counties that funnel clouds have been spotted or worse that tornadoes are on the ground.

Before diabetes – basically before life had gone pear-shaped* – horror flicks and severe weather were the only things that would keep my head off my pillow.

Then enters diabetes, in the first few years there were the occasional nights in which I would keep vigil, read a book or watch TV rather than set an alarm. Mostly because it just seemed easier. But for the most part if blood sugars were not behaving I would set an alarm or two and cozy back into my bed. The alarms rarely failed me.

However, sometime in year four I realized I was finding it more difficult to hear my alarms. Solution – move my alarm clock into my bathroom, turn the volume way up and have heavy metal blast through the night. Problem solved. For a bit.

In the last year I have become completely numb to my alarms. I can set a half-dozen alarms at the most ear deafening volumes and I will not wake up. Or worse – I will wake up long enough to turn them ALL off without a clue I’m doing it.

My dear husband has always been alarm deaf. I’m sure it comes from years of me hearing them, getting up and taking care of business. I’m certain he hears them but he knows believes I’m on it. There are nights that I have said – if you hear my alarm make sure I get up, and he does. I mean he makes sure that I get up or at least that I become conscious.

I am now at the point that I cannot trust myself to get up to alarms in the wee hours of the night. My solution – stay up. I rarely go to bed before midnight and most nights its much later. I am afraid to sleep.

My kids blood sugars aren’t always crazy high or crazy low so there are nights that I can safely go to bed by midnight. Yet there is a little voice – no it doesn’t sound like Freddie but it might as well – that says “what if?” Am I finally loosing it?

Should I be looking at color swatches for my padded room? I wonder if they have blue?

I know what would help me. I know there is a wonderful device that monitors blood sugars and had the ability to alert me should danger present itself. Sadly those devices are costly – like car payment costly – and just not attainable for us without the help of insurance. And because the FDA has not yet given the green light on the devices to be used by those under 17 I am at their mercy. Our insurance is a stickler for the rules. There are insurance companies out there that recognize the value of continuous glucose monitors for kids despite the lack of FDA sign-off. I applaud those companies – clients before cost. Because lets face it the only reason a company would hide behind FDA approval on a device that can’t possibly hurt the user is the almighty dollar.

Yes it would mean I would have to hear the alarms but something tells me I would. I believe this because I would get more sleep overall which means I would not sleep walk to the alarms and shut them off before crawling back in bed unaware of my actions. At least in theory.

So dear FDA – please pick up the pace with the approval of the Dexcom G4 continuous glucose monitor for those under 17. You are my Obi Wan Kenobi – and my only hope.

*pear shaped – describes a situation that went awry, perhaps horribly wrong. (I love the UK – The British have the coolest ways of saying shit)

Did You Dose?

So Sugarboy took a shower before school Friday. Then he came down to eat breakfast. He tested prior to the shower and was high and he corrected by dosing insulin via his pump. Which (and he would be totally ticked at me for sharing this – but alas doesn’t read my blog) was why he needed a shower since he had an accident in his bed. It happens sometimes when he goes high at night. I thought he was good to go Thursday night when I went to bed at midnight with him at 178 with 0.6 units of insulin still working in his body. Unfortunately he wasn’t so he went high and thus the accident.

He finished his shower. Got dressed and came down to eat breakfast. He ate breakfast and I asked him to dose. He used his meter to dose his meal insulin (Animas Ping pump can bolus via his Ping meter). He ran off to brush teeth and hair. He had time to spare so he and his brother watched some TV while waiting for me to take them to school.

I stopped in the boys bathroom to turn off the light (they never turn off lights).

From the bathroom I yelled to Sugarboy: “Did you dose for breakfast?”

To which he said “yes”.

I said “no you didn’t.”

He said “yes I did”

I went downstairs, stood in front of him and said: “No, you didn’t.”

Without looking up he said “yes I did”

“no, you didn’t because I have your pump.”

At that point he patted around his waist, looked up and saw me holding his pump.

He had dosed using his Animas Ping meter which sent the bolus information to his pump to deliver the insulin. The pump and meter heard each other and the pump followed the instructions the meter sent remotely from another floor. Basically the pump dosed the bathroom counter.

Marcus reconnected and used the “fill canula” option to dose his insulin. He did not use the regular dosing features to dose since his pump believed he had already dosed. Dosing a second time would lead the pump to believe he had more insulin in his system than he did.

We love our Animas pumps but like any technology things can go screwy. Sometimes (although rare) the meter and pump can be less than 2 feet from each other and the meter will tell us it can’t communicate with the pump. Then there are these times (even more rare) that the meter and pump will talk to each other from an entire floor away.

From what I have heard the Animas Vibe – does not have the remote bolus feature. It had to be removed to allow for the pump to act as the Dexcom G4 receiver. Since the Vibe is not available in the US yet, and the Dexcom G4 is not approved by the FDA for people under 17 (thus not covered by our insurance) we don’t have to make any decisions regarding leaving the Ping option. But it will be a tough call once all the pieces fall together with the FDA and the Vibe. We love the remote bolus feature. Especially on nights where I need to actually use the pump to set temp basals while the kids sleep. (Remote cannot be used to change pump settings)

I do have a couple of suggestions for Animas though:

1 – provide a blood sugar check reminder alarm that can be set to alert user two hours after each meal or correction bolus.

2 – allow for multiple low cartridge alarms (blogged about that previously here)

I am grateful for insulin pumps – they make managing my kids diabetes much easier. I look forward to getting my kids the Dexcom G4 Continuous Glucose Monitors when the FDA approves for under 17 – when we test drove the Dex G4 it was the best diabetes week ever for me and both my kids. (Wish I could tell you more about our G4 experience but as participants in the G4 study to get FDA approval we was asked not to specifically blog about it)

I do want to say that I am not a pump snob. I believe that all the current insulin pumps available offer nearly the same features and get the job done. It is really just a user preference. Each pump available has slightly different features that may appeal to different families.

If you are considering an insulin pump I suggest discussing it with your doctor’s office, researching each pump online, calling the various manufactures to talk to experts, asking for opinions on twitter from people who use different pumps, consider your or your child’s life style, consider how much insulin you or your child uses in a three-day period (Animas holds 200 units – other pumps hold up to 300 units), and lastly although least important in my opinion – color options.

Here are some links to the pumps currently available in the USA.

Animas

Medtronic

T:Slim

OmniPod 

Happy Pumping all.

 

Thursday Shout Out

So yesterday @saraknic author of Moments of Wonderful  shared her Wordless Wednesday post via Twitter. (Wordless Wednesday’s is when bloggers “only” post picture(s) – no text – on their blogs). @HenshawKim – new to blogging (1Type1) –  inquired as to what “Wordless Wednesdays” was. Sara was kind enough to share the themed day idea with her. Kim then asked what other theme days there were. I shared DSMA’s Blog Carnival with her but then also shared the following tweet: “On Thursdays it is #shoutout day – feel free to write all about me. (shhh Sara don’t tell her I made it up)” Of course I was having a go at Kim at the time, but all day today I was thinking “Why The Heck Not?”

Thus – today (possibly the last day of humanity on planet Earth due to large celestial bodies lining up and possibly disrupting/reversing Earths polarity or messing with gravitational pull causing climate chaos – but who’s worried?) The little voice inside my head just made the “Ahem” sound because I was straying from topic.

THUS – today I wanted to shout out to Tony @blogdiabetes. Tony produces podcasts dealing with diabetes and shares them on his blog Blogging Diabetes. Some of his podcasts are him sharing new technology, tips, tools, ideas and humor. Many of his podcasts include interviews with people prominent in the diabetes community, diabetes advocates, doctors, dietitians, fellow diabetes bloggers and more.

I had listened to a few of Tony’s podcasts back in the spring of 2012 but alas I got crazy busy preparing to move to CA and without daily reminders let the podcasts slip away. Recently something – and I don’t recall what or who – made me revisit Tony’s podcasts. His latest podcast (at that time) was an interview with Mike Lawson @MrMikeLawson @WSWCL  and I don’t miss an opportunity to hear Mike’s stories. He tells the best stories. After listening to Tony and Mike chat about diabetes, diabetes and dating, mirror mantras, the DOC (Diabetes Online Community), other great DOC peeps, and more I realized that I loved listening to others chat about all the things I care most about.

I normally listen to audio books while I clean house or take long drives. Listening to something while I clean improves my efficiency since I am less likely to be distracted by social media, the TV or my bed. Today I enjoyed listening to Tony discuss his experience with the Dexcom G4 CGMS (Continuous Glucose Monitor) while running errands around town. Tony made standing in line at the post office a little less miserable.

So here it is my Thursday Shout Out is to Tony @blogdiabetes for his informative, insightful, and often humors podcasts. Thanks Tony – keep’m coming.

Sunday Seven

  • Dexcom G4 approved (for adults) – so happy for my DOC friends and all pwd/cwd that will be able to get the G4 – it is an amazing Dcare tool. Hoping FDA approves for under 17 so I can beg our insurance company to help us get them for our kids. Currently our insurance will not approve anything ‘off label’ so we need under 17 approval if we want financial help via insurance.
  • Hubby and Middles attended a 3 night/4 day field trip – missed having them around – hated not being able to chaperone myself (dads with sons/ moms with daughters). They both had a blast and I’m thankful Chad had a chance to spend the time with Middles on a school event.
  • During a late night sugar check I walked in to find Sugarboy drinking an imaginary juice – blood sugar was 46 – gave him a real juice – check in 30 min to find a lower sugar – another juice – 30 min later 118. Sad and thankful to find other dmamas on FB (one whose son was eating an air sandwich about the same time sugarboy was enjoying his imaginary juice)
  • While walking to lunch after class a friend of Sweetstuffs thought she (sweetstuff) looked ‘off’. She encouraged Sweetstuff to test her blood sugar. Sweetstuff said she was fine and continued on to lunch (she was gonna test soon anyway). The other student continued to encourage Sweetstuff to check her sugars. Begrudgingly Sweetstuff did as she was asked sooner than she would have for lunch. She was 35. While the friend could have gloated or said “i told you so” she instead fished a fruit roll-up from the Dpack and handed it to Sweetstuff – she also alerted a teacher. First have I said how badly I want the Dexcom G4s for my kids and second have I told you all how blessed we are for all the wonderful friends Sweetstuff has made in our new home.
  • I had an off morning – I texted some wonderful DOC friends in a group message that I hated CA and wanted to go home to TX. I got lots of virtual hugs back. I love “The Hive” – and I am thankful to always have this group of friends in my pocket – always only a text away.
  • First family outing since we officially moved in to our home. We went to a pumpkin patch with a huge corn maze. The boys took off on their own to find their way through the maze (daddy close on their heals) while Sweetstuff and I wandered slowly through the tall corn stalks and discussed how much more fun it might be at night. After navigating the corn maze we picked out pumpkins, enjoyed some fresh corn on the cob and called it a win.
  • Today – best day of the week. Completed our first ever JDRF Walk to Cure Diabetes in CA. It was at the Oakland Zoo. It was very foggy and misting just a bit – perfect walking weather. We were joined by two of Sweetstuff’s friends and another mom. I met Mr. Mike Lawson of the Diabetes Hands Foundation promoting the Big Blue Test. He is as sweet in charming in person as he is in the DOC. Can’t wait for more meet ups.