If Type 1 Moms Had A Resume

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As parents of Type 1 Diabetics, we wear many hats that go unnoticed to those around us who are not aware of the work involved in managing this disease. As I enter the workforce again, I am trying to find a balance of humor and acknowledgment of all the skills required to keep our kids happy and healthy. I thought my work-life balance wasn’t the best before (hello, not taking pain meds so I could work the next day after my c-section!) but this 24/7 job is one of the most rewarding and humbling jobs I could ever be a part of.

If you had a T1D resume, what would it look like? Here is what I envision my T1D resume being:

Low carb on call chef

  • Able to whip up a no-carb snack when hunger strikes while fighting a high
  • Can create themed charcuterie board fit for Cinderella while keeping both children busy
  • Able to convince athreenager that the bag of almonds is so much better than the cupcake she has been eyeing through the whole party

Middle of the night medic

  • Can navigate a room of toys without stepping on the dreaded Lego
  • Capable of doing a finger prick without waking up the sleeping giant
  • Skilled at dosing through the door at 2 am

Philanthropist for Tpe 1 charities

  • Can turn any holiday into a fundraising event; candygrams, Easter egg drops, muffins for moms, donuts for dad, and breakfast with Santa
  • Graphic designer for the team t-shirts, posters, flyers, and more
  • Perfecting the art of the ask to restaurants, bike shops, acquaintances, and every Facebook friend

High blood sugar tantrum negotiator

  • Willing to poke the beast to calibrate Dexcom and confirm that they are, in fact, in the 300s
  • Know when it is best to rage bolus and let her have quiet time
  • Creator of the calm corner filled with T1D books, glitter toys, stress balls and art supplies

President of happy pod change club

  • Creator of stickers, temporary tattoos on pods, and painted pods so that they are “princessy” enough
  • Holder of all the pink starbursts that can be consumed after the change is all done
  • Affirmation repeater for the dreaded double Dexcom and Omnipod changes, or when she feels scared

Director of childhood magic preserved

  • Can assure her that she is brave, strong, and can create her own story
  • Creator of games and teller of stories while waiting in doctor offices
  • Community creator so she can find “pod friends” that are similar to her

Medical bill accountant

  • Expert negotiator over co-pays
  • Can translate health insurance legalese into easy-to-understand terms for medical purchases
  • Ability to cross check what bills come in versus what is actually paid and covered

Call center liaison

  • Can turn hold music into family dance parties
  • Able to speak calmly and kindly to customer service agents after two hours
  • Proactive towards returns for failed pods and sensors

Blood sugar analyst

  • Can figure out whether this pizza will skyrocket blood sugar now or in four hours
  • Master at temporary basal rates when things go awry
  • Able to master the art and science of insulin to growing body’s needs

On call medical assistant

  • Can figure out where an old pod site is infected or they just played with purple markers before nap time
  • Able to choose the right endocrinologists, coordinate the best care and make medical decisions based on information provided
  • Know when to stop WebMD searches and Facebook groups and call the doctors

Fridge organizer

  • Can still fit two weeks of groceries despite losing the butter container
  • Containers filled with snacks are clearly labeled as free snacks, 5 carbs, 10 carbs, and more
  • Able to fill the plethora of juice boxes into a small bottom drawer

Glucose Glossary- Compression Lows

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Oh, those compression lows- let’s talk about them!

We tend to get these in the middle of the night when we are comfy and fast asleep. And then without warning, BEEP BEEP BEEP, urgent low! Thank goodness for a good anti-age cream because these tend to age me so quickly. They look very similar, with the Dexcom it’s just smooth sailing with normal numbers and then a drastic crash.

Here’s what happens; your monitor is reading interstitial fluid- the fluid between the cells.

Interstitial fluid actually makes up 40% of the water in your body. Interstitial fluid contains salt, fatty acids, glucose and minerals like magnesium, calcium and potassium.  Continuous glucose monitors (CGMs) are machines which measure the glucose level in the interstitial fluid. As glucose moves into your interstitial fluid, it makes the journey out of your blood stream. So, since they are changing rapidly, the CGM has a ten-minute delay.

When you are rolling over (especially in sleep!) or pushing really hard by sitting down on your sensor, that compression of the sensor into your body is separating the interstitial fluid away from the sensor wire so the glucose is away from the wire. If you are seeing a huge drop without any cause, that’s usually a sign that it’s a compression low. When these happen, we move Ella around a bit and tend to do a finger prick just to be sure. We then wait a few minutes for the blood to circulate and the numbers will typically soon correct themselves. If it continues to drop make sure to treat and calibrate!

Prepping your kiddo for blood work

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Blood draws can seem really scary for those first few visits for both you and your child. I always try to do a deep dive of research before these bigger moments so I’m fully prepared and have an idea of what I need to do to make it a positive experience for Ella.

Here are some of the key takeaways I have learned prepping for blood draws over the past three years!

Let’s start with a Target shopping trip- I mean who can resist an excuse to go!

They now have an over-the-counter option of Lidocaine which makes life so much easier than trying to fill a script before you go!

I also try to get a few dollar spot options as a reward as well as glow sticks. I let Ella hold them and when she starts to get anxious, we crack them and talk about the magic. It gets her focus off the needle and adds a little bit of fun.

About a week before we talk about the process in a very easy and simple way. We don’t talk about needles but Ella has had a really hard time with tourniquets. We got a blood pressure cuff and added it to our doctor sensory play so she can get used to have something wrapped around her arm with her own autonomy.

On the day of I make sure to keep her as hydrated as possible. If they aren’t fully hydrated it can be hard to get a draw and worst-case scenario you have to do it all over again another day. Here are my tricks and tips to keep your toddler hydrated!

She gets dressed in a short-sleeve shirt so we don’t have to worry about rolling her sleeves up and as we get ready to go, I make sure to hype up what we will do after her blood draw. We have a tradition of watching Aladdin and baking chocolate chip cookies, this tradition has helped give her something we wouldn’t normally do on a random day as a special date when it’s all over.

Before we go into our appointment, I make sure to put some of the lidocaine on both arms so they can sink in while we wait and we don’t have to worry about having to switch arms if we need.

If there is an option to have a child life specialist or a pediatric phlebologist make sure to ask for that since they have a bit more experience with kiddos and can make the experience a bit easier for everyone! You can also help with a warming pack that can help them find the vein if there is an issue with that.

I make sure that I am calm during the prep and try to chat with her about anything but the bloodwork. The calmer I am the more Ella feeds off that energy. Sometimes she still gets nervous and cries but I continue to stay calm, acknowledge her feelings and go back to talking about fun things and what we can do at the very end. She gets the option to play with a toy or watch something on my phone. It is normally super quick so that is the easiest solution for us.

Once it is over, I make sure to tell her what a great job she did no matter what the situation was and how strong and brave she is for doing it. When we get in the car, I make sure to give her a little snack on our drive home because the blood sugar drop afterward can be a little rough. And then finally we make some chocolate chip cookies, cuddle up on the couch and watch Aladdin!

Do you have any tips and tricks that help you with bloodwork?

Here is also a link to a fun Quest Diagnostics coloring book that can also be a fun way to prep your child for blood work!

Click to access Quest_Coloring-Book_PP2479EN_2016.pdf

Glucose Glossary- Basal Rate

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Let’s talk about basal rates-

In a non-diabetic, the body naturally transfers the liver’s supply of glucose into the body’s cells, the pancreas excretes a little bit of insulin into the blood stream every couple of minutes. The body will create a stable blood sugar naturally.  For Type 1 Diabetics using an insulin pump helps mimic this process in your body.

With a pump, the basal rate is the amount at which an insulin pump infuses small background doses of short acting insulin every minute essentially mimicking long-acting insulin. Basal rates are programmed into the pump in terms of units per hour, you tend to need high basal rates at night and the early morning and they are lowest in the middle of the day. The beauty of a pump is that you can deliver higher or lower basal doses at certain times of day to be able to meet what your body’s insulin needs are. Within 24 hours the flow of insulin through basal rates amounts to 50% of the body’s total insulin requirement. Of course, this can differ depending on your activity level and caloric intake. The beauty of having a pump is that the insulin level can be adjusted and tweaked to match your body’s needs

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Determine your starting basal rate, when switching from injections to a pump:

o Take your total daily dose of Lantus/Levemir = _______ units

o Divide this by 24 (there are 24 hours in a day) = _______ units/hour

o When using an insulin pump, you may need less insulin than with injections. You may start with 90% (or less) of your total basal.

o To find 90% of your total basal, multiply the answer above (units/hour) by 0.9 = _______ units/hour

Glucose Glossary- A1C

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Did you leave your endo appointment with an A1C that felt like a report card but still have no idea what it actually means? Let’s breakdown what you should look at, why it’s important but also why it’s not an end all be all for kicking butt with Type 1 Diabetes.

Your A1C level reflects two things: your fasting glucose level and your levels after eating. It doesn’t reflect the growth spurt that happened, the burnout or the sleepless nights to bring stubborn highs back in range. While they are a helpful tool to look at for average glucose rates remember that you are so much more than that number.

Because the blood cells are replenished every 120 days this is the best way to test the hemoglobin’s exposure to glucose over that time. To break this down a bit more: Hemoglobin is a protein in your red blood cells that carries oxygen through your entire body. Glucose is a sugar that enters your blood stream from the foods you eat and the foods we eat contribute to higher glucose levels in the blood. The more elevated the glucose the more glucose is attached to the hemoglobin. A1C results are then shared as the percentage of all hemoglobin that is glycated.

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If the A1C is higher than you want, you might want to talk with your endocrinologist or diabetes educator to see what is happening, take a look at the numbers, and get a game plan together on how to manage it.

Here is a helpful link to a A1C calculator as well!

How To Manage Someone Mentioning an MLM Cure For Diabetes

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So your well-intentioned friend is a #bossbabe suggesting the latest and greatest project her MLM has rolled out is the perfect cure to your kids Type One Diabetes; what do you do? While they may think their latest dragon egg sparkle skin seaweed peel will be the magic cure, you know better, and it can be hurtful that others believe this disease needs a bit of magic and will instantly be cured. It’s okay to feel that frustration, but viewing it as an opportunity to share a bit about T1D can be a blessing for everyone.

First, I try to be polite and then go into a bit more education. Start with a simple “Thank you for thinking of us and wanting to share something you think might help her. Unfortunately, her pancreas is unable to do its entire job. While we hope for a cure, we manage with insulin and attention from our endocrinologist and care team.”

Second, use it as an opportunity to teach someone about the nuances of diabetes. Most of us knew nothing about diabetes before our children were diagnosed and probably didn’t understand the gravity of it. There is so much confusion about Type 1 vs. Type 2 vs. Gestational and others, so just remember that it can be a time to talk about the differences or acknowledge that there is not a cure currently.

The beauty of this, while it’s frustrating, can be an incredible way to share your experience and educate someone about the warning signs, what they can do to help and understand what your day-to-day looks like. So with all of that in mind, I hope that they give you a bit more grace and understand that while they mean well, there is no reason to bother you about it.

How do you manage the expectations of crazy cures from friends and family? Have you looked into cinnamon yet? 😂

How to Manage needle phobia

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It’s no secret that needle phobia is a big problem with any kid but especially our Type 1 kids. After being poked and prodded at the hospital (especially a long DKA diagnosis) coming home and starting up shots can be pretty traumatic for both the parents and children. Here are some tips and tricks that helped us make the transition from tears to treats (listen, I’m not above bribery from time to time) so we could all begin this new life together.

  • Have a conversation- Let them adjust to this sudden change and encourage them to ask questions
  • Make a plan- Let them know what they can expect after this injection, dex or pod change and follow through. Will you be having dinner, will you be getting ready for the park, can they play dress up? Get them excited for what’s to come after this.
  • Stay calm- your attitude and reaction to all of this can make or break how they react. This book is really helpful on those anxious moments that seem to bubble up. Our favorite is the snake breath: Take a long breath in and hiss for as long as you can on your breath on the way out.
  • Affirmations- another fun option we do to keep her occupied and empowered are affirmations. My story highlights have a bunch of ones we use to get through the day.
  • And let’s not forget, Bribery- Listen we can all win mom of the year and have coordinated Pinterest activities every day but sometimes you just need to get it done! On double dex and pod days, Ella gets a starburst and 10 minutes of TV time to settle and move on with the rest of the day

How are you handling needles in your house?