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.”

 

 

Whack A Mole

When my kids were younger I would take them to Chuck E Cheese often. We lived in Texas and the summers were hot so the days we didn’t hang by the pool we would hang out with the mouse. Yes it was a petri dish of germs. No I didn’t take hand sanitizer, might not have even required the kids to wash hands before eating. A favorite game was always Whack A Mole. All three of my kids loved whacking the mechanical moles and often we would race since there were two games right next to each other. There was something therapeutic about whacking those plastic heads repeatedly always trying to beat the game.

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It is no longer therapeutic. The moles are no longer cute plastic rodents with hard hats and a grin.

The moles are highs and lows, the game never ends and I don’t get any tickets to trade in for trinkets.

Also I am now playing three games at once. Are you imagining me dashing between three arcade machines with a mallet whacking heads? Oh and the mallet – it is always attached to a single machine with a short cord so often I forget which mallet I’m holding and find myself flat on my ass because I tried whacking a mole with the wrong mallet. (giggling yet? It’s ok – I find humor in it too because if I didn’t I’d need to be drunk off the cheap beer)

My kids are 15, 13, and 11. Hormones, puberty, outside play, missed boluses, sports participation, lazy day electronics, lack of any meal schedule, late nights, endless snacking, and more make the whack a blood sugar game all that more difficult.

Yesterday on a FB page for parents of kids with diabetes another mom was waging war on a stubborn high with her 14-year-old son. Multiple highs and multiple corrections with different insulin (MDI) and she and her son likely felt they were using a 19th century flintlock pistol to lay siege on an enemy using 21st century armor. At least that is how I felt between 10pm and now at 6:30am. In the FB feed when she first posted her concerns of repeated highs despite corrections I, like others, had said if it’s a pump it may be a bad site. If it is MDI it may be bad insulin. Any chance the child was sneaking food? This exchange took place long before my 13-year-old returned home from a babysitting gig and learned of his 432.

Of course he isn’t currently wearing his Dexcom so he didn’t realize. He had checked his blood sugar at 7pm and was in the upper 200s. He and the boys he was watching ate pizza (yes part of the issue I’m sure) and he bolused and corrected. I called him a bit before 9 and asked him how he was. He checked BS and was in the 400s. He corrected.  He returned home a bit after 10 and checked, still in the 400s. He corrected again with his pump thinking it was pizza related and went off to bed, well he is a 13-year-old boy and it was a Saturday during the summer so he corrected and went off to veg in front of his Xbox. A bit after 11 I was going to bed and asked him to check again, 512. What? New pump site, new insulin, correction, kisses good night, alarm set for 1am for me. 1am – 355 not a big drop for 2 hours. Another correction. 3am 279. 6:30am 224. Stubborn ass high for sure. A losing battle of Whack A Mole or laying siege to a heavily armored enemy with a flintlock. Either way I am left feeling defeated.

Every person and child with diabetes reacts differently to insulin – oh and there are different brands of insulin that work better in some than others. Teens have raging hormones that seem to taunt the best offensive line of diabetes management.

I think I may have strayed from my original intention of this post which was to describe what it is like trying to help 3 kids of different ages and genders manage diabetes. Different games of Whack A mole – trying to use the same mallet on all three games, etc. It is true – corrections like the ones my middle son completed would have likely corrected my youngest son with little difficulty – less hormones. The corrections would have also corrected my daughter easily on most days. Why is correcting highs in my 13-year-old son more difficult? Perhaps his pump settings such as his correction factor (how much insulin he gets to correct out of range blood sugars) needs adjusting – although we had increased the ratios just a few weeks ago.

I’m not sure this post has any redeeming qualities. I think I was mostly venting. But if you ever feel like you are playing an endless game of Whack A Mole perhaps you will find solace in knowing it is a game we all play at times and if you are a parent of a teen and the game is getting harder, it is normal. I hope you won’t make the same mistakes I have made and accuse your teen of sneaking snacks (although mine really does often sneak snacks but nearly always boluses for them). I have found the less I trust my teen to be doing the right things (how do we define the right things in a teen that wants to be normal?) the more difficult it becomes to help him manage his diabetes. When he is high and I try to help discover why he immediately goes on the defensive. That isn’t helpful to either of us. I have never punished my kids for high blood sugars and I’ve never rewarded them for in-range numbers. I commend them for checking and bolusing but that is about it. Still the temptation, especially towards my middle child, for me to say “what did you eat?” is a strong one. I have said it many times and accusing him (whether I was correct in my assumption or not) has built a wall of defense. I don’t need an additional wall of defense to negotiate while trying to battle the actual blood sugar.

Sigh. 3 kids with diabetes, two teens and one right on their heels.

Thank goodness for coffee, cookie dough ice-cream and the diabetes online community.

The Butterfly Effect

A man allegedly committed felony assault and my daughter ended up in the ER in DKA (diabetes ketoacidosis).

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While this story will in no way be as sexy as the Ashton Kutcher movie The Butterfly Effect you may still want to grab some popcorn and a soft drink because it will likely be long and wordy.

The story begins with a man whom I’ve never met. He allegedly committed an act of felony assault. The man needs to stand trial and so a panel of jurors are needed. My number is called and thus begins a two-day process of selecting the best panel of jurors to decide the fate of the defendant. Day one of the process passes without any issues back on the home front with three kids with diabetes managing themselves while mom is away in the city dutifully participating in our judicial system.

To make it possible for me to attend to my civic duty, my husband agrees to stay home an extra hour in the mornings in order to get the kids off to school on time. Day o1 everyone did exactly as directed. Day 02 dad thought it would be nice to treat the youngest kid to a Starbucks sandwich before school. Sweet of him, right? Well yes, but he made one (almost could have been fatal) mistake – he mentioned Starbucks to my youngest while in ear shot of the oldest. My oldest has a bit of a Starbucks addiction, so of course she sweet talks daddy into taking her as well and then dropping her at school rather than insisting she ride the bus. Shouldn’t be an issue right?

Well lets back up to just 45 minutes prior when I check in with my daughter while she is getting dressed for school. I asked a reasonable question – the same question I asked of all my kids that morning.

“How much insulin do you have in your pump?”

Why did I want to know? Because I was going to be 45 minutes away in a court room with no cell phone. I didn’t want any of the kids to find themselves without insulin. True they all have insulin and pump paraphernalia in their health offices but its easier to be proactive before school.

The boys each had plenty of insulin for the next 48 hours.

My daughter had just 33 units of insulin in her pump. I asked her what her thoughts were. She believed it would be sufficient to last the school day.

Her calculations were based on her typical grab & go breakfast of a banana and granola bar. <<<this is important in the story.

So off I went for day two of Voir Dire. (It sounds super sexy but is a painfully slow but a necessary process in selecting a panel of jurors.)

My husband takes my daughter to get Starbucks and drop her off at school. The youngest chooses to skip Starbucks to instead play on his computer for an additional 30 minutes and then walk himself to the neighbors for a ride to school.

Ahhh Starbucks with your delightfully delicious breakfast sandwiches and steamy creamy sweet beverages of pure bliss. This story wouldn’t have been possible without you.

Breakfast sandwiches and beverages received, my husband dropped my daughter off at school – likely a tad bit after the bell.

Meanwhile in Seattle I am checking in with the bailiff and ordering my own cup of coffee from a machine in the juror pool room.

The potential jurors are called to the court room. In the elevator up I send a group text to the kids reminding them to have a good day and check blood sugars. Then phone silence.

While I was listening to an older gentlemen/potential juror explain to the court that we never actually landed on the moon, my daughter was back in class discovering she had forgotten to bolus for her Starbucks.

Here is where the grab & go breakfast plays a role – she based her daily insulin need calculation on a 30 gram breakfast, 45 gram lunch and daily basal needs. 45 minutes before she left she didn’t know she would get her fix at Starbucks or that her breakfast would actually be closer to 100 grams of carbohydrates. This changed everything. While she woke up with a pretty blood sugar of 124, she was already above 500 when she checked her blood sugar in class. Based on her blood sugar correction factors she barely had enough insulin to correct. That was before lunch.

Now at this time I would like to say my daughter is a teen. She isn’t all consumed with diabetes management. She typically makes good decisions regarding food, insulin dosing, and general diabetes care. Yet she is a teen. She also knows I am in a court room and my phone is off. So she makes a decision that she will likely never make again and it was a learning opportunity. She decided to ration her insulin rather than refill her pump at school.

She decides to take 3/4 of the insulin needed for the blood sugar correction. Thus leaving insulin available for her basal insulin. (I know for those not using an insulin pump or those that have no experience with diabetes some of this may all be mumble jumble – sorry). She eats only 1/3 of a her lunch and uses the last of her insulin. She is still well over 500 at lunch.

When she arrives home she refills her pump with fresh insulin. That was at about 3pm.

I was home but catching a 15 minute cat nap before heading out for a quick birthday celebration with friends. It had been an exhausting day listening to the prosecuting attorney and defense attorney ask the same questions repeatedly. I had been dismissed from the case for reasons not explained to me. (although I have some good ideas as to why)

At 6pm she checks her blood sugar and is now over 600. She decides her pump site has gone bad and replaces the pump site but uses the same infusion site tubbing from the previous site.

I am unaware of most of this. She did tell me she was high and was doing what she needed to do. There was no need for me to ask questions or try to micromanage her. She has done it all before and I was proud she was doing what she needed to do.

She asked for a ride to the talent show at her high school. I obliged.

Two hours later I get a panicked phone call.

“Mom. I need you to come now. I need you to come get me. I feel so sick. I can’t hardly see and my legs are killing me. I need you to come get me now.”

I had been out shopping with the middle kid so we rushed the check out line and sped towards my daughter.

In the car she said “I need to go to the hospital”

We dropped the boy at home, she grabbed some comfy clothes and I grabbed a bucket and a blanket.

She was in the bathroom vomiting. She held a Keto stick that showed massive ketones. (A Keto stick is a strip of paper with a color changing tab that a person with diabetes pees on to check for ketones – I can’t explain it all so if you don’t know – ask) And yes I know a ketone meter is more accurate but tell that to my insurance company would you – thanks.

We rushed to the hospital. The whole ride to the hospital my daughter looked as if she was about to drift out of consciousness. I drove faster. All the while rotating scenarios in which I would get pulled over for speeding while my daughter went into a coma and how I could possibly end up being the most knowledgable person in the ER about DKA. Crap – drive faster.

We arrive and rush into the ER. It was a ghost town thankfully. It takes only 3 minutes to get her checked in and back in a room with a nurse looking for veins in her severely dehydrated arms while another asks questions.

What is her blood sugar? Above 600

Has she vomited? Yes

Do you know if she is positive for ketones? Yes

When was her last dose of insulin? 30 minutes using her brothers pump. 6 units

Is she wearing a pump? Yes but it’s disconnected – we think somethings wrong with it or her site.

Holy crap they speak my language. Amen.

4 attempts and the IV is in.

6 vials of blood are collected

Fluids are descending to hydrate my girl. Another 6 units of insulin is administered.

Heart rate 124

Pulse Ox 69

30 minutes later her color is improving and her heart rate is going down while her pulse ox is going up.

1 hour in and her blood sugar is in the 400s.

Ketones still very large.

Electrolytes improving.

While waiting on the doctor I did exam her insulin pump. There was no insulin coming from the tubbing. There was a smell of insulin coming from where the site tubbing attaches to the pump cartridge. Perhaps it wasn’t attached properly. I removed the old tubbing and replaced it with a set I had brought with. I primed the tubbing until insulin drops dripped from it. I attached it back on my daughter so she would be receiving her basal insulin.

The doctor came in then. He was ending his shift. He suggested once she is more stable we transfer to the children’s hospital in Seattle. It was a longer drive which is why I chose to go to the Swedish hospital only 15 minutes from our home. Plus my daughter is nearly 16 and prefers to be treated as an adult.

I expressed how impressed I was with her care so far and didn’t feel the need at that point to transfer her to children’s hospital. He left to chat with someone at children’s hospital. Then he returned with another doctor replacing him.

The other doctor and I chatted about ketones, hydration, blood sugars, and our prior experiences with DKA.

We didn’t really have any. When my youngest was diagnosed at age 2 he was in DKA because we didn’t even know kids could get diabetes – we thought it was flu-like.

Aside from that, the kids would occasionally have trace ketones if they forgot to dose for a meal but we would always handle it at home. Once when my daughter was 12 she got the flu and we went in to keep her hydrated after a few times vomiting. But she wasn’t in DKA.

After the staff had checked her level of ketones again and noted they were not going down very quickly I asked for crackers and jello. I explained that to get rid of ketones, carbs are also needed. I knew it sounded silly to the nurse but she obliged. My daughter happily ate 4 crackers and some red jello.

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I was impressed with how professional, compassionate and mostly knowledgable the ER staff were regarding DKA.

Still when they hung up the second bag of sodium chloride solution I stepped out to chat with the doctor (not to be confused with The Doctor, the last time lord).

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I questioned him about the possibility of cerebral edema. (I shouldn’t even know those words. I don’t want to know those words. I have not shared a link to explain cerebral edema because I am not qualified to determine which sites contain the most accurate information)

He said he was monitoring things and felt that a second bag would be beneficial and wasn’t concerned about cerebral edema.

I learned about cerebral edema a couple of years back when reading a story of a child lost in the ER because of the aggressive treatment of DKA. I don’t recall the article or any details aside from the idea that aggressive treatment of dehydration combined with aggressive insulin may have resulted in swelling in the brain. I am still not sure there is any consensus on what exactly causes cerebral edema in people (kids especially) during treatment of DKA. There is a whole lot of medical mumble jumble out there that talks about it but much of it goes over my head. I just knew I wanted to ask about the possibilities, especially in an ER that does not specialize in children or DKA.

My daughter fell asleep as the second bag of sodium chloride slowly dripped into her IV while I watched another episode of Doctor Who on my phone. Thank you Hulu.

Each hour a nurse named Don had come in to check her blood sugar. He was gentle and kind and did his best not to wake my daughter.

We had been in the ER for 4 hours thus far. Her blood sugar was still in the 300s. The doctor came in and administered another 4 units of insulin via her IV.  She still had half a bag of fluids to finish off.

Another 2 hours of sleeping for her and The Doctor for me.

When the fluid was finished, her blood sugar was under 200 and her ketones were down to moderate the doctor asked me what I wanted to do. I said “take her home”.

We checked out with her wrapped in the blanket I had brought.

Once home she climbed into bed and I got comfy on the couch to watch more Doctor Who while I waited another hour to check her blood sugar again.

I fell asleep after I checked her at 4am.

On Friday she slept most the day. I napped for a few hours too. She still was showing small ketones throughout the day but they were going down gradually.

It was a scary exhausting night.

As for the Butterfly Effect also referred to as Chaos Theory:

“In chaos theory, the butterfly effect is the sensitive dependence on initial conditions in which a small change in one state of a deterministic nonlinear system can result in large differences in a later state.”

Would my daughter have ended up in the ER had I not been miles away at the court-house in a court room with my phone off? Would she have called me from school to alert me to her lack of insulin? Would that phone call (had it taken place) stopped the perfect storm of questionable decisions and tech failure? If the defendant hadn’t allegedly committed felony assault would I have still been in a court room? Maybe I would have served on a municipal case involving a red light violation and been done before all the crazy started? Would the chaos have happened if she had boarded the bus with her grab & go breakfast rather than going to Starbucks?

No one can say. My daughter is well and has also learned a life lesson. Better for her to have learned that lesson now when she has a support system to deal with the big issues than when she is an adult on her own without as much support or financial resources. A friend of mine has always said home is a safe place to fail.

Parents – DKA is nothing to shrug off. It is beyond scary how quickly a missed bolus and a few mishaps can escalate into true danger. I know many don’t always check ketones as prescribed by our child’s endo. At least we don’t. Blood sugars fluctuate frequently and a missed meal bolus can usually be corrected within a couple of hours with minimal immediate harm.

Our take-away: If high due to a missed meal/snack bolus – correct by administering insulin. Do the recheck in an hour to be sure the correction bolus is lowering blood sugar. If it is not, trouble shoot other possibilities such as a bad infusion site or bad insulin. Give a second correction preferably by injection to be sure insulin is indeed administered. Then work to fix pump issues. Always plan for emergencies – maybe don’t leave the house with just enough insulin to squeak by with. Check ketones when high for an unknown reason or after staying high despite correction bolus. Be sure someone knows what’s going on other than yourself. My daughter was in a school full of folks who are able and willing to assist her even if she couldn’t contact me. Pride always comes before a fall.

If you actually made it to the end of this post you are a rockstar or need to get out more. But seriously – thank you for reading.

PS.

It was very bright in the room. I tried all the normal white light switches and was able to turn off some small lights but the huge florescent light directly above my daughter wouldn’t turn off. Then I noticed two light switches on the back wall that were red. My daughter told me not to touch them, that they looked important. Was that a dare? 

IMG_5727The large florescent light went out. The hospital continued to function. Plus I had already plugged my phone into the red power outlets labeled “emergency” which were clearly a gateway to my reckless behavior.

 

Stream of Consciousness

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I’m a mom with three kids with diabetes. It is a thankless job. A job that comes with many arguments, tears and fears. A job that requires a lot of attention much of the time and a still a job that requires me to back the hell off much of the time. There are fights each week, who didn’t check often enough, who ran out of insulin, who forgot to charge their meter or insulin pump, who ate three bags of Cheetos and left the bags under the couch cushion, who forgot to bolus, who skipped PE by telling the teacher he/she was low when in fact no check was done, etc etc etc (is the three ‘etc’ redundant?). It is also a job that includes; way to go, great job, I know it’s hard, I’m sorry, you’re doing great, just take a juice with you and have fun, I’m proud of you, it’s not your fault, thank you for checking, go have fun, let’s go get ice-cream, who wants a brownie, etc etc etc. It is an exhausting job with late nights, small hour alarms, neglected house work, twitching eyes, and an anxious pounding heart – thundering in my chest as I try to navigate the crashing waves of success and not-quite success. It is a proud job with a star soccer player, a dedicated lacrosse player, excellent grades, amazing friendships, funny moments, big hugs, bumped knuckles and high-fives. It is a job of advocacy with tweets, Facebook shares, diabetes mom lunches, camp committees, letters to congress, educating the public, writing this silly blog, and conferences. It is a job of worry because often diabetes brings a sidekick called depression – for the kids with diabetes and the caregivers who struggle to be the rock. Will my kids battle mental illness along with a chronic illness? Will they feel important and whole despite the crazy that diabetes is? Am I doing all I can? Could I be better? Will my kids grow to be the badass humans I know them to be? Too many tears. Too many days feeling lost and confused and questioning every parenting moment I’ve had. I look at my kids, I watch them sleep, laugh, and play and I know that at those moments they are safe and happy. I can’t fix it all. I can’t take the pain away. I can’t take their diabetes away. All I can do is make sure they know I love them. Make sure they hear often how important they are. Make sure they know it isn’t their fault. Encourage them to always try their hardest and ask for help when they can’t. All I can do is take it a day at a time loving them despite poor choices and things bigger than they are. It is hard and some days I just don’t know I have the strength anymore but there are no alternatives. We keep swimming and spend more time rejoicing in the moments we are given. Don’t look back – we aren’t going that way. Things will not get easier but we will get better at navigating the course and reboot when needed because this shit changes all the time. My head hurts, my eye twitches, and my chest is tight. Yet I got up, I showered, I got dressed, I hugged my kids and today is a new opportunity to love those around me.

I’m just here for the gloves.

It is 2015 and just so there is no confusion later this really is the year Marty came to in the future.

maxresdefaultAlthough that has absolutely nothing to do with this post. Honestly it has nothing to do with anything but somehow that picture has shown up on my Facebook feed a half-dozen times since Jan 1st. Granted similar photos showed up in the past only claiming that 2012, 2013, and 2014 were all the years Marty went to. Why is this so important to people? Anyway – be sure to post on your Facebook feed how everything you post is covered under copyright law – I hear that is important. Do it while sipping okra infused cinnamon water and your personal photos will be protected while you cure diabetes.

Moving on –

My kids all have had Endo appointments in the last 1.5 weeks.

I took the boys separately but together, meaning I took them together but separate from my daughter.

I took all three kids to the appointment before this one and honestly I am surprised we all made it out alive and free of any criminal charges. Seriously – my advice (free of charge) to any parent with multiple kids with diabetes or just multiple kids in general. Schedule separate appointments if you can. Doctors visits are stressful with just one kid. The stress for all parties increases exponentially with each additional patient.

Ok so the boys had their appointments back on December 29th.

It was time for blood work too.

IMG_5282 IMG_5283Those finger puppets were in the sticker basket. I was about to try to distract the boys from the poke of the blood draw needle but honest to goodness the blood whisperer (the man whose head you see) had poked each boy and drawn their blood in less than 2 minutes flat each. Neither boy felt the needle or knew what the heck happened before the blood whisperer dismissed them. *I did not name this saint of a man the blood whisperer. I was informed who he was after posting the picture of Sugarboy on my FB page wherein another Dmom saw it and told me about the blood whisperer. He is well-known in our community as being the best phlebotomist within 100 miles of Seattle.

As far as the actual appointments went – the boys A1Cs both came down a fraction. I don’t typically share A1Cs for two reasons: 1) Diabetes is not a competition 2) It is an average. I could say my boy had an A1C of 5.5 and all that might mean is he spikes extremely high and then plummets to the lowest of lows – and voila a very pretty A1C. *my boy is not 5.5 – I was simply using that as an example.

Sadly the appointment did come a good week into the holiday break which meant the weeks numbers prior to the visit were useless. Eating at random times, continuous snacking, lots of high carb treats, missed boluses, sleeping in, staying up till the witching hours and hours and hours of sitting in front of a game system. (yup – my kids spent quite a few hours playing video games and I’m not ashamed to admit it. Ok I am a bit ashamed – we could have, should have spent more time out doing something together, but they don’t get a ton of screen time during the week and this was their break and by golly it was mine too. I’m fairly certain a weeks – fine two weeks – of video games will not have ruined them for life.)

Anyway I asked the endo to ignore the pump/meter downloads from Dec 20th on. Instead we focused on the first weeks of December. In general the boys are doing well. Each is checking blood sugars 7-10 times a day and bolusing at least 4-5 times a day thus covering meals and snacks. Middles had quite a few boluses without blood sugars and spent many afternoons/every evenings above target. The doctor discussed how grazing or frequent snacking and bolusing without blood sugars is often the reason for the later afternoon/early evening highs. Post hoc ergo propter hoc. Middles agreed to cut down on random milk consumption and snacking and improve his bolusing with blood sugars.

Sugarboy didn’t have much to discuss. The doctor noted his post lunch lows and it was determined that he boluses before eating but often runs out of time before finishing his lunch. It was decided he would bolus for half his lunch prior to eating and then the remainder of his carbs after he is done. This is how he had been bolusing for lunch since kindergarten. This was the 1st year he had switched to a straight up pre-bolus.

It was a painless visit for all of us despite blood draws – seriously every endo office needs a blood whisperer.

You still with me? – How boring is this post right? I feel like some comic relief or intermission is in order. I read this  in a comment on tumbler and I am dying to try it.

Next time you are in a public rest room and you are washing your hands and a stranger comes up to wash their hands, cup your hands under the water to allow it to pool. Allow it to run over your hands. Then with a stone serious face say to the stranger “this water is getting out of hand.”

Did you get a good laugh? Maybe stretch your leg? Good.

Sweetstuff’s visit was tonight. (which was now last night because it is ow Tuesday morning)

She hates hates hates the endo. Not any particular endo – all endocrinologists. They tell her what she is doing wrong. They nit-pick, they tell her what she has to do or should be doing. There is nothing my daughter hates more than someone telling her what she should be doing or needs to be doing. Well, she hates the sound of someone chewing. She also hates the sound of the dogs lapping up water, and her cat cleaning herself, and she isn’t particularly fond of loud breathers. But her real hatred falls on endos.

Her appointment was at 5pm. I made dinner early and fed all the kids. She and I left at 4pm to get into the city. When we arrived I asked her if she wanted Starbucks and in the same breath told her she would be getting blood work done. While she was saying something like “yes, wait, what the heck?!$&?#!” I asked her again’ so how about Starbucks?’. We checked in and then went to the blood draw window. I told the receptionist I needed the blood whisperer (only I used his actual name). My daughter gave me the most annoyed yet somewhat intrigued look. We found a comfy spot to sit and soon she was called back for her blood draw. I told her she wouldn’t feel a thing and it wouldn’t take but 2 minutes. She gave me an exasperated look and declared to the blood whisperer that she was a hard stick due to spider veins. Where does she get this stuff? Three minutes later she came out looking both in shock and in awe. She admitted it was crazy how quickly and painlessly the whisperer did his job.

Moments later we were called back for measurements and vitals. She got on the scale and then checked her height. At this point I declared “You’ve been weighed. You’ve been measured and you’ve been found wanting.” She rolled her eyes. I was cracking up. It isn’t often I can quote a favorite movie in the literal sense. She was not impressed. Well she didn’t let on that she was impressed but I saw the corner of her mouth curl up just a smidgen while she shook her head with disapproval for my shenanigans.

When the nurse came in to ask for Sweetstuff’s pump I inquired if they had yet received the software to download a TSlim. They had not. They (the hospital group) have not endorsed the Tandem pump just yet. No doctor in the group has prescribed one (although I think our doctor would like to). I had anticipated that and I had printed out a months worth of pump data and meter data.

When the doctor came in with A1C results and to discuss the pump data with me I motioned her (the endo) towards my daughter. I said “she needs to discuss it with you, I’m just here for the gloves” waving a couple of rubber gloves in the air. Seriously the kids and I totally play with the gloves while we are there and I always leave with a few in my pockets – you never know when you might need a non-latex glove.

Sweetstuff’s A1C also went down. Not exactly where we want it but not anywhere that would suggest she isn’t doing most of what she needs to do. Her data shows 5-8 checks a day and 4-6 boluses a day. While she has had a number of extreme highs they could be explained by missed boluses, bad infusion sites or the occasional dead pump battery or pump out of insulin. She is a teen and while I don’t like to admit it to her often – she is doing a very good job most of the time and her occasional blunders are nothing out of the ordinary for a teen her age with diabetes.

The endo pointed out a half-dozen ways she (my daughter) was doing wonderful and made only a few suggestions of things that might improve some of the not great numbers. The endo complimented her on the number of blood sugars taken and her lower A1C. The endo never criticized, told her she was screwing up, or even told her she could do better. It was the perfect visit.

My daughter left feeling empowered and successful. IMHO – there is no better way to help a teen with diabetes do better than to allow them to feel pride and independence.

Woohoo! 3 Endocrinologist visits done and no school was missed. All the kids doing well. Plus I scored a few gloves.

My bit of advice – again free of charge:

  • Don’t fret over numbers the few days before endo visits – those numbers right before will not have an effect or large effect on your kiddos A1C overall. That goes for my adult friends with diabetes too – so many of you fret over bad numbers right before the endo. Stop that.
  • As much as possible have the endo talk to your child, even the littles ones. Empowering the kids makes a humongous difference in how they view their diabetes – do they view it as theirs or yours? Let them own their success or their short comings.
  • An A1C is not a report card. It is a progress report and can help you/your kiddos see what needs to be done to change things. Still it is an average – the numbers could be 400, 36, 390, 54, 512, 59, 464, 61, 63, 42, 119, 84, 72, 123, 111 averaged = 172 which would be roughly an A1C of 7.5 which is what the ADA recommends for kids. In no way are the imaginary numbers I listed above healthy. Again an A1C is an average of the amount of sugar in a person’s blood over a 2-3 month period. I was once told by an endo that just 2 missed boluses (resulting in a substantial highs) can increase an A1C by as much as 0.5. Imagine how many missed boluses a teen has in a 2-3 month period. Those 2+ missed boluses are not the only indication of how well the teen is managing his/her diabetes. 
  • Download pumps and meters at home between endo visits. I don’t do this and I should. Those pie charts, bar graphs and line graphs provide a wealth of information. I have no problem changing my kids basal rates, carb ratios, and correction factors. Why do I avoid pump downloads? Imagine how much more informed I would be if I looked at the data each month and taught the kids how to review the data. The data from Middles pump showed clearly that he was bolusing without blood sugars. I had no idea and it had been a chronic issue with him since school began. Knowledge is most certainly power.
  • Don’t forget your gloves. They are basically party favors from the endo.

I know this was long, but seeing as I haven’t posted in a couple of months I was making up for it.

Happy New Year all.

May 2015 find you happy and healthy, surrounded by love and laughter and full of moments that turn to memories.

Cheers.

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…

IMG_4801

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.

Normies

Who is a ‘normie’?

Basic answer – a person whose pancreas produces insulin AND their body knows how to use it.

Based on this basic answer anyone who has Type 1 diabetes, Type 2 Diabetes or LADA is not a normie.

I’m a normie. I wish I wasn’t but only because I’d like to take what makes my kids non-normies from them as my own.

Before you get all in a huff and puff thinking I assigned the label to myself or others and therefore also assigned the non-normie (not normal) label to my kids and those with diabetes let me be very clear. I did not.

I have spent many years being careful not to call my kids ‘diabetics’ – not to label them as different or abnormal. I have always referred to my kids as ‘having diabetes’ as in ‘she/he has diabetes’ not ‘she/he is diabetic’.

Does it matter?

To many PWD (people with diabetes) it doesn’t matter, but to my daughter when she was first diagnosed at age 9 it did. My youngest (dxd at age 2 a couple of years prior to my daughters diagnosis) being only 4 when my oldest was diagnosed had not given it much thought – he was more concerned with his lego mini-figures and action figures adventures then how he would be defined by a disease.

My daughter at age 9 (and well beyond her years in reasoning and understanding the human condition) refused to say she was a diabetic. She was willing to own diabetes but not willing to let it own her. (Those were her words shortly after diagnosis – in many ways I wish I was exaggerating my daughters understanding of things because at 14 she is often smarter than me and can outthink me in a heartbeat). Thus we consciously choose not to label her as a diabetic. We had not referred to our youngest as a diabetic previously either but mostly because of the Children With Diabetes website that I found shortly after his diagnosis – the title of the organization stuck with me and thus I had a child with diabetes vs a diabetic child. It wasn’t a conscious choice before my daughter was diagnosed.

So now where is this ‘normie’ coming from?

It came from an over-night diabetes camp that my youngest attended a couple weeks ago, my daughter attended last week and that my middles is attending right now. It is a 5 night 6 day camp in the middle of nowhere surrounded by lush forests and glazier run offs at the base of one of the Unites States tallest mountains (which happens to also be a stratovolcano and when I googled the mountain to learn more I learned how incredibly dangerous an eruption of the volcano would actually be – I may not sleep tonight – some things are best left unknown).

Getting back to ‘normies’ and camp (while trying to forget about decade volcanos and lahars).

My youngest didn’t mention ‘normies’ at all when I retrieved him from camp. This may be because he didn’t think much of it or the terms wasn’t used by the elementary kids. Prior to getting custody of our kids the parents attend a closing camp fire event. Each cabin (group of same-sex kids that will be entering the same grade in school) performs a skit or song parody. The elementary kids all did a skit and each was about 20 seconds long. The high school kids mostly all performed a song parody. In a couple of the performances I heard the term ‘normie’.

I didn’t have to ask what ‘normie’ meant – the context of the label as well as the root word ‘norm’ gave it away. I didn’t think much of it. I know what an all diabetes camp means to my kids. While at camp they are the norm so those without diabetes would be outsiders and at this camp there are very few outsiders and those that are there are volunteers who likely have a connection to diabetes such as a child, spouse, or sibling with diabetes – all campers have diabetes.

On the way home from camp my daughter received a text. When reading the text she laughed out loud. I asked her what was so funny. She told me people like me wouldn’t understand. The reason I wouldn’t understand was because I am a normie. I never did learn what was so funny. It was an inside joke and I suspect likely something about parents of kids with D being overbearing schmucks. Despite my best efforts I admit to occasionally earning that label.

The moral of this story – no matter how hard I try I will never truly understand all that goes with not being a normie.

 

 

 

 

oh F***

I’m torn. Really seriously torn. I want to give these kids kudos. I want to congratulate them and wish them luck at the Grammies. I want to thank them for raising awareness about the dangers of sugars and how eating unhealthy can/will lead to obesity and other health issues.

The thing is – I can’t. I can’t congratulate them, wish them luck or thank them because of one of the last text slides after their video.

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No indication as to what form of Diabetes the creators are targeting.

Hear is the info shared beneath the video on YouTube – (which you can only see if you expand the text by clicking “Show More”) HERE is the link to the video.

“In PUSHIN’ WEIGHT, directed by Jamie DeWolf, Simone Bridges makes the metaphorical connection between the Food Industry, High Sugar foods and the pushing of drugs on our streets. Youth Speaks and UCSF Center for Vulnerable Populations are leading the campaign against Type 2 Diabetes with our new project, The Bigger Picture. Raise your voice TODAY!”

The “Type 2 Diabetes” is not in bold in the text under the video – I altered the quote to raise a point. This is the only place the phrase “Type 2 Diabetes” is used.

I won’t even go into how wrong I think it is overall to be suggesting that Type 2 Diabetes is caused simply by unhealthy eating. There are other reasons Type 2 Diabetes happens too.

But I am a parent of 3 children with Type 1 Diabetes. My kids did not get diabetes because I pumped them full of sugar, corn syrup, bacon and fat. I fight often to educate people about how Type 1 Diabetes happens and first and foremost how it has nothing to do with what I fed my kids or what I ate while pregnant.

I am proud of these kids. I’m glad they created a PSA video. I just wish they didn’t include “Diabetes” in their slides or if they really felt it necessary – they could have listed Type 2 Diabetes as one of many health problems that can be caused by poor food choices.

How did I come to find this *gem of a video. An email I received from “The Daily Good”. I get daily emails from “Good” and most are worth the read/watch. I was excited at first when I saw the subject line of today’s email.

“Watch This Diabetes PSA – Could Probably Win a Rap Grammy” 

Here is the text from the email I received which included a link to the video I shared above.

“Highlighting how today’s sugar consumption is similar to drug addiction, Youth Speaks and UCSF Center for Vulnerable Populations have teamed up with high schoolers to raise important questions about healthy food access with provocative PSAs about diabetes. Their campaign, The Bigger Picture, gives youth opportunities to not only show-off their creative skills, but also win educational scholarships.”

Click HERE to learn more about The Daily Good. Most the stuff I receive is *Good, today’s was an exception not a norm.

I do hope these kids receive educational scholarships. Their video is quite good. But still – it didn’t need to focus on diabetes – any kind. And honestly – for shame UCSF for not recognizing how this video could have a negative impact on how hard those of us in the Type 1 community (and all of the DOC) work to educate others.

I find it ironic that this is my first post of 2014 and follows behind my daughters guest post about the boy in her class that suggested he would get diabetes from eating too much sugar.

Happy friggen New Year.

 

The Green Bracelet Post

Warning – This post is over 2300 words. It is also not funny. It was a hard post to write. I appreciate you reading it – maybe after you read it you will read the prior post and consider supporting our JDRF walk. Not trying to belittle the importance of this post by plugging for donations – the opposite.

Those that know me or have been following my blog know that I have two children with diabetes and a third child, Middles, that has been showing signs of developing diabetes and has been taking part in TrialNet to study the progression of the disease over the last 18 months.

In June I received word that Middles had failed his last Glucose Tolerance Test via TrialNet. His pancreas was not able to produce enough insulin to keep his blood sugar in range during the two-hour test. I shared my thoughts about his failing pancreas HERE.

Prior to our trip to the Children With Diabetes Friends For Life conference in July I had not been able to get him in for a confirmatory GTT. I had been watching him closely and checking his sugar periodically to keep him safe. While I had caught a number of elevated blood sugars (230s-250s) his body was able to correct itself within an hour or so. I had also caught a number of “low” blood sugars (50s -60s) but food corrected those.

We attended the FFL conference July 9-15. At registration the wonderful conference volunteer asked me how many green bracelets I needed. Adults and children with diabetes all get green bracelets. Those that do not have diabetes get orange bracelets.

Seems like an easy enough questions right. I had two kids with me that were already diagnosed so I should ask for two green bracelets. I must have taken too long to answer because the volunteer went on to explain who would get a green bracelet. I had been before so I knew what the green bracelets meant. Still I stood there unable to answer this ‘easy’ question. The volunteer seemed concerned. She reached out and touched my hand and as she did so I realized I had tears slipping down my cheeks. I jerked my head rapidly, somewhat like a dog would do to get a fly off its nose. I was doing it to stop the cascade of thoughts that had paralyzed me.

I told the wonderful volunteer 2 green bracelets. She asked “are you sure?” This of course lead to more leaky tear ducts. I explained that I have a third child that is on the verge of a diagnosis. Her beautiful face could not hide the sadness she felt for me and my boy. She patted my hand and said “I’m going to give you one of each for your son, you can decide when you’re ready.”

I can decide.

If only that were the truth. I know she didn’t mean that I could decide if my child had or didn’t have diabetes. She only meant which bracelet to use that would keep my son safe while at the conference. She (the volunteer at registration) is a wonderful soul and her kindness did not go unappreciated.

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Middles wearing an orange bracelet while visiting Harry Potter (Otter) world after attending the conference.

I put the orange bracelet on him. I had a number of reasons. First he hadn’t been diagnosed yet. Second, this could be his last conference without diabetes so let him have the orange bracelet for this one last conference. Third, my husband, bless his sweet soul, was/is having a terrible time acknowledging the fact that we will be 3 for 3. He already gave up his dream vacation in Hawaii to take us to the conference; I’m not sure he would have tolerated a green bracelet on Middles.

I brought the green bracelet home. I don’t know that I meant to. It was still in our registration envelope. But here it is, still pristine, not worn. The green bracelet that means diabetes. Thankfully at Friends For Life it means the Norm. It means you are never alone. It means you have friends for life even if you only meet them once.

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We had a fabulous time at the conference. My Middles did continue to show signs that a war was raging in his body. He was tired. He was cranky. He was starving. He was overly emotional. I checked his blood sugars daily but hadn’t caught any above 250, although he had a few in the 50s.

Why in the 50s? Because he is experiencing reactive lows. His pancreas can’t entirely keep up with his carb intake so his sugars go ‘high’ (200s) and his pancreas freaks out and goes into overtime making more insulin which in turn causes a low. This BTW is why his A1C is 4% (as of June 7th – it is likely higher now that I have seen so many numbers >250).

This is why an A1C alone should not be considered a diagnosis tool if it is within normal range. It is an average. The average blood glucose of a person with an A1C of 4% is 68mml. My boy is in the <80s more often than any other number – fasting, 4 hours post meal, middle of the night. However 2 hours post meal he is in the 180-250 range so his pancreas says “oh shit” and kicks out more insulin than is necessary to correct the high. Reactive Hypoglycemia.

Reactive Hypoglycemia is a chronic disease all by itself and is not always a precursor to diabetes. People with reactive hypoglycemia have to drastically change their eating habits to stay healthy. PWRH usually need to eat small low carb meals every 2-3 hours.

I do not believe my Middles simply has Reactive Hypoglycemia. His sugars are too elevated after a meal. My Sweetstuff had the same symptoms in the 6 months prior to her Type 1 Diabetes diagnosis. By the time she was diagnosed she was showing tell tail signs of diabetes including excessive thirst and urination. Middles does not exhibit those symptoms in a consistent way – they vary.

Basically because of his participation in TrialNet we are catching his diabetes very early.

It is my hope that we can start taking action now to preserve his remaining insulin producing cells and extend his honeymoon phase as long as possible. The honeymoon phase is the time after diagnosis in which the body still produces insulin so less artificial insulin is needed. It is not an easy time since the combination of artificial insulin and irregular productions of real insulin in the body can cause frequent hypoglycemic episodes. Still – this is an important time to be proactive to maintain the insulin production in his pancreas for as long as possible.

I started this post in July. I returned periodically to read/reread and edit. Since the time I began it things have changed. I wish with all my heart that they changed for the better and it was all a nightmare. A bad dream that I woke up from to find that I still ‘only’ was the mother of two kids with diabetes.

The bad dream is not a dream. It is a very real.

On August 1st at 11:45pm I learned the results of Middles confirmatory OGTT.

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Beginning OGTT. No idea what will transpire in the next 5 hours.

 359.

He failed again this time much worse than the first time he failed.

His fasting blood sugar before the test was 99. I do not have the 1 hour and 1.5 hour blood sugar readings. Truly they matter less than the final number of 360.

He had finished the test. I had my other two children and two additional children hanging out at the outdoor shopping center in Stanford while Middles participated in the OGTT. I needed to go get the other four children, feed everyone and then we were supposed to be playing on the beach by 1pm. That didn’t happen.

Instead when the test was complete and they did the final blood sugar check both with a blood draw that went to the lab and a finger stick we didn’t get to leave. The study coordinator came into the room wearing an expression that didn’t need words. We weren’t going anywhere for a while. I did leave for a few minutes to take money to the other kids and have them take themselves to lunch. Yes I cried during the 7 minute drive from the clinic to the shopping center and the 7 minute drive back.

Back at the clinic another nurse/CDE that works with various studies and at the children’s hospital came by to help determine our next steps. I had met this wonderful soul previously via a study my daughter is participating. I don’t know if she realized how much her being there helped me. I’m not sure if she realized how much her hug meant to me. Or how much it meant that she continued to check in with me the rest of the evening and the next day – even though Middles was not her patient.

Middles and I spent nearly 3 more hours at the clinic waiting for his blood sugar to return to normal range without administering insulin. It was 94 at 2pm. We were going to leave. Not to go to the beach, we were going to a lab to have more blood drawn to check other things like, thyroid, electrolytes, c-peptide (how much insulin he was making on his own), CBC and more. The labs needed to be taken at a laboratory affiliated with our own physicians. As we were leaving Middles said he felt sick. Within minutes he was vomiting. We stayed for a bit longer. When we did leave we were not going to the lab. We were going to the ER. I don’t believe it was high blood sugars that caused the vomiting. Although vomiting for people with diabetes can indicate a very serious issue. His vomiting was likely due to not eating anything except 5 cheese sticks all day, the stress of the diabetes diagnosis and the yucky glucose drink he had prior to the GTT. Still if a person being diagnosed with diabetes vomits in front of a number of diabetes medical professionals – you are sent to the hospital.

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at ER – not in a bed yet. Just waiting.

By the time we got to the hospital his blood sugar was 84 and he showed no symptoms of diabetes so the ER staff basically said “all is good” and sent us on our way.

I spoke with the endocrinologist the following morning. She had set up an appointment for the following Wednesday to see Middles. In the meantime we were to check his blood sugar before each meal and two hours after each meal. Also – avoid all fast acting sugars (candy, soda, sweets). I have been reluctant to share that last point. Sugar can not cause Type 1 diabetes. Avoiding sugar can not reverse type 1 diabetes (or any diabetes). Middles has diabetes and there is nothing we can do to make that not be true. However, since he has some insulin producing ability we want to avoid stressing the pancreas and causing reactive hypoglycemia.

His appointment went well. His A1C is up to 4.9 which is still well within ‘normal’. The endo officially confirmed his diagnosis of type 1 diabetes. She wants to start him on Lantus, a long acting insulin but before that happens she wants us to continue to check his blood sugars for a bit. If I catch numbers above 250 we will start the Lantus. That was yesterday. The 5 days prior to the appointment I had not caught a single number over 159.

Tonight – he is 359 – one week exactly from the GTT that resulted in the same exact number. Thursdays suck.

We now officially have 3 kids and all 3 kids have Type1 diabetes.

I don’t know why. People will ask lots of questions that I don’t know the answers to. They already asked when it was ‘just’ two kids. They will ask how its possible (dumb luck). They will ask if it runs in the family (it doesn’t – no other cases). They will ask how I manage it (they will have a pitiful face when they ask – and I’ll answer some days I do better than others – I have strong, brave kids which helps).

Then there will be people who want to know more details – did I not breastfeed?, did I drink while pregnant?, did I pour corn syrup down my babies throats?,  etc. These people want me to say “yes” to any and all the questions that they believe might suggest I didn’t do right by my kids, that way they can sleep better at night believing that all the things they did do right will keep their kids safe. I don’t blame these people – diabetes is scary and when there is no logical explanation it is scarier. (Just FYI – I did breastfeed for 18+months each kid, I did not drink alcohol, I did not feed my kids concentrated sugar or even a lot of regular sugar – just the normal amount most parents would deem acceptable.)

My Middles is doing great with all of it. He and I have talked about it often in the last few months and even before that. About a week before he failed his last GTT after I caught a 232 on the meter I asked him if he was scared about diabetes. This is what he said – verbatim (I know this because it was one of those moments I loved him so much I wanted to absorb him into me).

“I would be afraid if I didn’t see Sweetstuff* and Sugarboy* do everything like it was easy. I mean I know it’s not easy but they do it and they are fine and your friends* do it and they do everything they want. I’m just a little worried about counting carbs.”

*He did not refer to his siblings using their blog names – he used their real names.

*The friends he was referring to are my adult friends with diabetes that he met at the Friends For Life conference.

If right now my Middles biggest worry is about how to count carbs than that’s ok with me. He is so very smart, kind, generous and brave. He is also my most tender-hearted child and I pray with every ounce of my soul that diabetes does not make him hard.

For now….

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Also change twitter handle from @momof2t1s to @momof3t1s – suckage (total state of suck).

 

 

 

Not The One Where I Get Philosophical

I have a half-dozen drafts started regarding all kinds of crazy.

Including the ‘green bracelet post’, one called ‘You Have my Sword’ regarding the DOC, and one about the theory of probability (where I get all philosophical).

But this post is easy so I am posting now.

Each year our family takes part in the JDRF Walk To Cure Diabetes. The kids look forward to the JDRF walk every year and now that they are older they get very competitive. Feel free to donate to any of us on the team page or to the team as a whole. Donations = hugs. Thank you in advance for your support and generosity.

This is our walk video this year: Stick With It Sugar Walk video 2013

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This is our walk page: http://www2.jdrf.org/goto/teamstickwithitsugar

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This is where you can purchase your very own Stick With It Sugar t-shirt even if you are not walking with us on October 20th: www.teespring.com/stickwithitsugar When you purchase a Stick With It Sugar t-shirt you are also supporting the JDRF as all proceeds will go directly to the JDRF. To keep the cost of the shirt down we have set a goal of 100 shirts to be sold. The shirts will not be printed until we meet our goal. (although I can reduce the goal amount to ensure everyone that wants a shirt can get one even if we don’t meet the goal of 100 – To get the shirts at $15 we do need have at least 30) The T-shirt campaign ends August 27th so order soon – why not right now?

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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)