Vinyl Stickers for T1 Supplies

Just sharing some cool vinyl stickers for T1 supplies I found on Etsy. The shop owner has some premade for all types of devices, but also custom designs based on your ideas.  I sent her what I wanted for our NovoPen Echo's and Dexcom G6 transmitter and she sent mock-ups the next day. And shipped out the day after my order.  She's in Scotland, but shipped free to the US over a certain order amount.

Shop name is Diabity's.  No affiliation... just happy with the service!

 

Diluting ~ Sterilization Liquid

Something to think about when diluting insulin.  When you buy empty, sterile vials to dilute into they will always have a little liquid inside left behind from the sterilization process.  It's completely normal and not harmful.  

But the point of diluting is to be able to do corrections with as much accuracy and consistency as possible, right? For this reason, I always draw out the sterilization liquid before I dilute.  Sometimes I get very little out (usually just a few units), but today I just drew out 18u of that liquid.  😲

While I don't know that this would have made a huge difference had I not removed it, I'd rather not find out. 😉

Dexcom G6 Sensor Cover

 Wanted to share a cool little gadget I found on Amazon to help change overtape easier on G6 sensors. Put the senor/transmitter on like usual. Then you put this little plastic shield on (it's not sticky...it just sits on top). Then you put the overtape on. Samuel went his usual 5 days before the edges start lifting, but the overtape peeled right off and the sensor tape looked perfect underneath.

The 1st time we see used the free, clear overtape provided by Dexcom. It's barely bigger then the shield, but it still stayed on for 5 days. (Samuel isn't an athletic kid though!) He didn't like seeing the shield through the tape, so next time we used a nude patch which covers it better too.

Diluting Insulin Pens

Trying something new with Samuel. We haven't used an insulin pen in about 9 years and honestly I'm pretty opposed to them for super-low doses (due to inconsistencies when tested). With that said, I'm looking for an easier way to dose insulin while we're out. But I also need to be able to fine-tune doses, especially correction doses. 

1) I color coded our pens with tape to match our home color coding system to keep things consistent. 

2) The Novolin-R Flex pen can only dose in 1 unit increments (boo!), but Samuel often only needs 1.5 units so I diluted our pen to a 1:1 ratio so I can dose in half unit increments now. 

3) A typical correction for Samuel is anywhere between 0.4 - 0.8 units so I diluted a Novolog pen to a 4:1 ratio so I can dose in 0.1 unit increments.

4) On the insulins that I diluted, I marked it as "diluted" on the outside of the pen and on the inside when you take the cap off just as an extra precaution.

And FYI, the Frio Duo cooler bag says it holds 2 pens, but 3 fit pretty well. Not sure I like the Frio so I have another small pen holder on the way to try also.

Where there's a will, there's a way, right?

Glucagon

This post is about something hopefully a diabetic will never need, but I wouldn't be without it.  Glucagon.  An emergency tool for when blood sugar is so low that you can't chew glucose tabs, swallow liquid glucose, or are unconcious.  Low carb helps avoid dangerous lows, but it can happen. There is always a chance of hitting a vein which can be very dangerous.  (This has happened to Samuel. It can turn a regular ol' day bad... fast!) Better safe than sorry. ❤️

There are 3 types of glucagon:

1) Glucagon kit ~ this is a liquid in a syringe that has to be injected into a vial, shaken, drawn back into the syringe, and then injected into the thigh (usually).

2) Gvoke ~ pre-mixed glucose that is injected (similar to above, but no mixing which people find stressful during a low blood sugar episode).

3) Baqsimi ~ glucose nasal powder that is sprayed into the nose.

Glucagon can be expensive, but all three types have savings cards (on their website) to get them inexpensively or even free.

I ask our Endo for our script to include 2 units ~ 1 for home and 1 for our to-go bag.  All three types need to be kept at room temp, so don't keep in your car.  Always make sure you and your family members know where it is and how to use it. For the one at home, I tape it to the inside of our kitchen medicine cabinet and label it "emergency glucagon" (see pic).

Life moves on despite having diabetes

T1 life. Life moves on despite having diabetes.

 

I try to sit close to Samuel during his weekly swim class so his CGM sensor will continue to transmit to his phone, which is sitting next to me. 

 

Today, half way through class his blood sugar started to drop, so while his sister was taking a turn down the lane, I motioned for him to come to me. We poked quickly and he was 62. He said he felt perfect, so we conservatively corrected with 2 Bottlecaps (2 carbs of glucose). I sent him on his way chewing glucose as he got back in the water in this pic. We'll poke again after class (or sooner if he feels like he needs to) just to be safe.

 

 

Our Process of Tweaking

I'm often asked how we fine tune and make adjustments. Sometimes it hard for me to answer...there are so many variables and I honestly know ours.  But there are practices that I feel all T1's can employ. 

One of those is to log your results.  You can't fix what you can't see.

Next, change only one variable at a time. If you increase your bolus amount and increase your pre-bolus time and you go low, which change caused it?  It takes longer to fine tune this way, but I feel you have the best ability to learn how all variables work together.

When Samuel goes through a hard growth spurt (as he is now) often both his basal and bolus needs change - definitely during the spurt, but often permanently changes after it settles down.

His boluses have changed quite a bit -  the amount and prebolus time.  We've been working on each meal and look at them individually.

Here are some general rules of thumb for how we adjust insulin:

*Fast spike, stays high: more fast-acting insulin
*Slow spike, stays high: more Regular insulin
*Spike, but drifts down: longer pre-bolus
*Drops fast, stays low: reduce insulin
*Drops, comes back up: decrease pre-bolus time

Sometimes adjustments are a combination of these tweaks, but one at a time.

Below is our past 12 hours.

Overall, good but we're still getting a spike after lunch.  We've adjusted his Novolog and Regular (independently) and feel like we have the dose right.  I've been increasing his pre-bolus time 2 minutes at a time.  Each day the spike gets less severe and smooths out on its own.  Today was a 24 minute pre-bolus. Tomorrow I'll increase it to 26 minutes and we'll see what that does.

This is a pretty casual process for us. We don't like highs or lows, but they happen. We log the result, try to keep our foods consistent, and try better the next day.  This process is what we're trying to teach Samuel as he grows up with this disease.

Cruddy Day

Every once in a while, we have cruddy blood sugar days for reasons unknown.  Our best guess is that Samuel is either in a strong growth spurt, getting sick or both.  He was floating along just fine last night in the 70's to 90's, then around 4am his blood sugar shot up and he woke up from his legs cramping badly.  We haven't been able to get his blood sugar down since despite several correction shots.

I know it isn't food related because he's had all usual low carb foods.  For lunch I even dosed more than usual, including a correction, and he's still going up.

He still has insulin on-board, so hubby took the kids for a long walk through the woods to try to pull it down.  If that doesn't work, we'll do another correction.  I'm just thankful this is an exception and not the norm.

Easter Baskets - 2019

Here's everything layed out to go in their Easter baskets for tomorrow.

Evie's...
Big bunny, 2 dresses, shower poof, bath bombs, nail polish, lavender soap, hot wheels, and an Extreme Dark Lily's chocolate bar (very low carb).  She also has a What's in the Bible DVD, but it won't arrive in time... whoops!

Samuel's...
Big bunny, 2 shorts/t-shirt outfits, hot wheels, What's in the Bible DVD, and a new baseball bat (obviously that won't fit in the basket), and an Extreme Dark Lily's chocolate bar.

That's it for the baskets.  Tonight we'll fill plastic eggs for their egg hunt with coins, a few dollar bills, stickers and small things like that.  We're taking our eggs to our friend and neighbor's house do our hunt with them.

We'll dye eggs as a family, watch an episode of What's in the Bible together, and we'll read aloud the story of Jesus's death and resurrection from the Bible.  🙌🙏✝️

It's going to be gorgeous tomorrow, so I'll probably grill something simple... chicken breasts and veggies maybe, but food isn't the main attraction of Easter at our house.

To Sprinkle or Not???

Anyone that has followed me for a while knows we avoid sugar at all cost.  Especially hidden sugar.  But what if sugar can be planned and consistent?  A lot of lunchmeat has small amounts of sugar (say 1g per serving) and many T1's I know do fine with lunchmeat.  Is any amount of sugar "bad"?  I don't really think so... here's why.

Last Christmas my kids asked if we could put sprinkles on our cookies.  We went to the store and looked at the ingredients... pure sugar...so my answer was "No".  I didn't really look at amounts, I answered based on the ingredients.  I searched online to see if I could make sugar-free sprinkles and sure enough you can, but it's pretty labor intensive and expensive.  I thought again about the sprinkles I could buy.  Then I thought about lunchmeat, meat sticks and a few other things Samuel can eat perfectly fine with small amounts of sugar.

1 serving of sprinkles (1 tsp) is 3 carbs.  I was standing in the store a second time trying to visualize 1 tsp of sprinkles... it seemed like a lot to me.  So I bought a jar and went home and started measuring.  Here's what various amounts of sprinkles look like weighed out...

So, 1/4 tsp of sprinkles is only 0.75 carbs.  Yes, it's pure sugar, but I thought I'd test it.  Keep in mind, my objective was to add sprinkles for fun, not to add sweetness.  It turned out 1/4 tsp is WAY too many sprinkles for 1 cookie.  The "right" number for us is about 15 sprinkles per cookie, which means a 1/4 tsp is divided between 4 cookies, so we're adding not quite 0.2 carbs per cookie.

I still carefully tested with Samuel and lo and behold, I don't have to bolus for the sprinkles at all.  I bolus for how many low carb cookies he'll be eating, but that's it.

Could I make sugar-free sprinkles?  Yes.

But in a world of 40-60 hour work weeks, homeschool, baseball practice, dance class, housework, and being a wife (etc...) a shortcut that causes no extra insulin is a win in my book.

Each person has to do what is right for them. At the end of the day, its normal blood sugar with as tight of a standard deviation as we can get that decides whether a food "works" for us.  If it doesn't work, we don't force it.  It just so happens this works for us.

Our Journey in a Snapshot

One of the things I'm asked most often by parents of newly diagnosed T1 diabetic kids is what our journey looks like.  I break our journey into 3 phases (red, yellow, green), which I've outlined on this 7 year long graph of Samuel's A1c history.

Each phase was an important stepping stone to the next.  I wish we hadn't gotten stuck in the middle (yellow) phase for so long, but at the time we were in our Low Carb journey completely on our own (no online support/groups), but I don't regret the phase.  It was an important way for us to learn.  I have to see WHY things works - either for the good and the bad.

Part of the reason I feel like we have such good control now isn't because I read a book [Diabetes Solution] and it told me what to do (although that WOULD work if that is how you learn!).  Our control is because we know what NOT to do because we tried doing "our" version of Low Carb.  After about 2 years of not getting the results we wanted, we re-read Diabetes Solution and binge watched Dr. Bernstein's Diabetes University videos on YouTube.  We buckled down and made massive changes to follow the book/videos.  That is result you see in the consistency in the 3rd and final (green) phase of the graph below.

No super mom/dad powers.  No rocket science. No quantum physics degrees.  Just a mom and dad that took a while to realize the book they read was spot on and decided to follow it with only a few exceptions that we don't feel are "core" deviances. ❤️

First Eye Exam: Diabetic or Not?

I took Samuel for his first eye exam today.  After indicating he was T1, the Tech asked me his A1c, average BG for the past month, and time since dx. Our Doctor came in and did the normal exam (20/20 vision), then she said there are 2 scans she does for diabetics.  I explained his A1c his been 5.0 - 4.5 for 3 years straight and was under the impression retinopathy occurred from high BG.  She readily admitted damage is from high/uncontrolled BG, but also felt the tests were a good idea to give us a base-line for his first exam.  I agreed.

She did an OCT test to check his retina thickness and look for leaking fluid.

Then she did a really cool retina picture.  It clearly showed his entire eye, all the blood vessels, macula, optic nerve, etc.  After this test she got really excited an animated.

Moment of truth...

"Despite only being 8yo, since he's had diabetes for 7 years, I fully expected to see some damage.  If you hadn't told me he's diabetic, I would have had absolutely NO idea he was.  And I've suspected people are diabetic before they've known and sent them to their GP where they've been diagnosed".

She then spoke directly to my son telling him that how his Mom & Dad take care of his diabetes is really, really great.  Then she pulled up some retina pictures of other diabetics and showed us the damage high/uncontrolled BG has done (my son's eye on the left/uncontrolled BG eye on the right...zoom in!).

I've been close to tears several times today.  Seeing something so visual (no pun intended) to validate the importance of what we do has been huge to all of us today.

Shout Out to the Non-D Siblings

Our T1 kiddos endure a lot, but their non-diabetic siblings are not without impact.  They hear medical terms most kids don't know.  They see blood, needles, shots, infusion set/CGM insertions daily. 

Numbers and math are a part of life - blood sugar, carbs, protein, insulin doses... and those numbers can be life or death.

They discuss food like adults.... what will that do to blood sugar?, is that low carb?, is that healthy?, does that have sugar?

And there are a few that are so passionate about helping their T1 siblings, they offer to do all they can.  Our daughter willingly checks her sugar periodically so we can see what a functioning kids' pancreas does.  She reads labels with us.  She watches cooking shows and thinks about how a meal can be made low carb to work for us.  She cooks  and bakes with me.  She eats exactly like her brother (and us) to support him. She's worn a CGM for weeks so we have extended data so we can set goals ~ an attempt to mimic what is happening in her body with our son.

This little girl is a mother hen ~ the most compassionate and selfless T1 sibling  anyone could ask for. 

Checking her blood sugar... she was sporting a blood sugar of 84mg/dL.  ❤️💋

Sleeping Through The Night

Waking up today marks the THIRD night in a ROW that we've all slept through the night with no CGM alerts.  I'm pretty certain this is an all-time record.  My non-diabetic friends right now are thinking "huh?".  But my fellow T1 friends/parents of T1's... you know what I'm talkin' 'bout!

There are all kinds of night-time diabetic routines.  What is yours?  🤔

Ours is to trust our CGM.  I don't set alarms to wake up to do night checks unless our CGM that day has been uncomfortably "off".  Maintaining good blood sugar at night is SO important to health, but so is sleep.  During the day I set CGM alerts to 65-105.  At night, I set it to 65-120. I find Samuel has a natural circadian rhythm were he often drifts up to about 115 until about midnight and then drifts back down.  So I set his CGM alerts to allow that to happen (if/when it does), but to not let it get too high.  

Balance... great BG and sleep are needed for the health of our WHOLE family.

Best. Day. Ever.

We have a lot of really great days.  In fairness, we also have some not so great days, but the good outweigh the bad.  And our "bad" is nothing compared to when we started our journey years ago.  Yesterday we had such an extraordinary day, I had to dig through records to see if any diabetes day had topped this one... and I can't find one. 

I forgot to snap a CGM pic, but it aligned with our log below... average BG of 79mg/dL with an SD of 4 for the day.

There wasn't anything particularly special about this day.  Normal foods, normal activity, normal insulin doses.  Everything just happened to align for a perfect day.  I am a big proponent of logging our day (chart below). It helps me identify trends, look for issues, and make tiny adjustments the next day (based on what happened yesterday or the past few days).

At it's most basic, we rate our blood sugar (BG) control based on 2 things:

• Average BG - The average BG for a child (pre-puberty) is in the 70's.  My non-diabetic daughter's average BG is 79. (A non-diabetic teen/adult is in the 80's.)

• Standard Deviation (SD) - SD is a statistic that shows how tightly various numbers are clustered around a mean in a set of data.  In our case, it's how tightly controlled your blood sugar range is.  For example: BG of 60 - 250 is a large SD and not tightly controlled.  BG of 60 - 110 is a much tighter range.  A healthy, non-diabetic's SD is roughly 5-12.  For a diabetic, SD of <20 is considered exceptional. I am happy with 25 or less for now.  As Samuel gets older and learns how he feels when his blood sugar is low or high, I hope this will get tighter.  Our goal is to mimic a non-diabetic's SD as best we can.

When I looked at my records, I can find plenty of days were his average BG is in the 70-80 range, but couldn't find a day that had as tight SD as yesterday.  Being low carb and using the insulin management routine we have is a huge part of our success.  Do I wish I could figure out a magic formula to make everyday this perfect?  You bet your sweet bippy I do, but in the meantime, I'll soak in days like this all I can.

Huge shout out to Dr. Richard K. Bernstein and his book Diabetes Solution that taught us how to achieve non-diabetic blood sugar for our kiddo.  We will forever be grateful.

Low carb... The Tables Are Turning

I usually cringe at most diabetes magazines.  They're loaded with typical "eat whatever you want - you'll be fine" mentality.  I was pleasantly surprised by this recent article in Diabetes Forecast stating a low carb, even ketogenic, diet for diabetes control may be a smart way to go.

A few years ago people thought following a low carb diet was going to cause the sky to fall and it was most definitely a fad - all the while often not realizing that low carb was THE way doctors treated Type 1 diabetes before insulin and even up until about 20 years ago. It's been around for well over a century and to my knowledge the sky hasn't fallen once! It's only been since the development of fast-acting insulin that the medical mindset changed [for the worse in my opinion].

We've been low carb for 6 of Samuel's 7 years as a Type 1 diabetic and would never, ever consider go back to high carb.  We've been down that road and it took us several years to undo the damage it did.

One note I want to make is that the article mentions high fat, moderate protein which a lot of keto folks do.  However, more science-based low carb/keto diets are moderate fat, higher protein, which is the model we follow and has given Samuel fantastic growth.

Link to the full article...

http://www.diabetesforecast.org/2019/01-jan-feb/what-you-need-to-know-about.html#.XCVpnQddw84.link

Hashimoto's Diagnosis

I've been a little quiet for the past week because our family has been absorbing a new diagnosis for Samuel.  Last week he was officially diagnosed with Hashimoto's Thyroiditis Disease (Hashi's for short).  It's another autoimmune disease, like Type 1 Diabetes, where your body attacks healthy cells, but in the thyroid instead of the pancreas.  It's fairly common for it to happen to T1 diabetics because their immune system's wires are already crossed, so to speak. Fortunately we caught this in it's early stages.

The good news is that there are some known foods and chemicals that can trigger the antibodies to form and attack, so we're adjusting our diet even more to help with his Hashi's. We already avoid most of the food triggers because they overlap/complement our low carb method of treating T1 diabetes, with the exception of dairy.  Dairy is the #2 biggest Hashi's food trigger, so this will be an adjustment for us.  At this point we're doing so cautiously as we learn because dairy, like for most people, is our main source for calcium.

We're in the beginning phases of research so I don't claim to be an expert by any means.  But we will take the same approach with Hashi's as we do with his T1 diabetes... and that is to provide the very best care based on science and common sense... not necessarily what mainstream medicine has taught for decades.  If we can avoid cell damage by avoiding certain foods/chemicals, we will.  If and when we have to switch to hormone medicines, we will.  Our goal will be to achieve thyroid levels within normal ranges, or preferably, optimal thyroid ranges.  We will adjust whatever necessary, as a family, to ensure he stays happy, healthy and thriving. 

Many future recipe posts will likely be dairy free (DF).  I've been in the process this past week of looking for new recipes (why reinvent the wheel!) as well as converting some of mine to DF.  As I learn more about this disease, along with how it affects our T1 diabetes care, I will be sure to post updates.

For those interesting in learning more about Hashimoto's here is a link to a doctor who came most recommended to me from trusted T1 diabetic / Hashimoto friends:

https://thyroidpharmacist.com/articles/hashimotos-and-thyroid-antibodies/