Friday, April 25, 2014

Disney World and Diabetes - 2014 Update

Annually, we try to take the kids to Walt Disney World.  To me, this is truly the Happiest Place on Earth and ever since, Type 1 Diabetes entered our lives, one of the only places where we all relax and jump into the fun without overly worrying about T1D Management.

This year, there was a lot of internet talk of the new Disney Access Service called the 'DAS'.  Because Disney had only recently unveiled this new card, we weren't sure of what to expect.  I started with a hefty bit of googling and came back with the Disney Parks DAS Overview.

From their own official website, here is the DAS in a nutshell:

Disney Parks have an unwavering commitment to providing a welcoming and inclusive environment and accessible experiences for guests.
Disney Parks is modifying the current Guest Assistance Card program, which provides access to attractions for guests with disabilities, so it can continue to serve the guests who truly need it. The new program is designed to provide the special experience guests have come to expect from Disney. It will also help control abuse that was, unfortunately, widespread and growing at an alarming rate.
The new Disability Access Service (DAS) Card will allow Guests with disabilities at Walt Disney World Resort and Disneyland Resort to receive a return time for attractions based on the current wait time. Guests Relations at the front of each park will continue to assist Guests and provide assistance that is responsive to their unique circumstances.

At first that seemed fine.  However, later I read that the DAS required someone to process your claim, decide if it was an acceptable need, take a picture of the person requesting it and then, hand you a card where if you wanted to, you could take to a ride area and receive a time to come back.

I am not being cynical but that is a ton of work and full of potentially damaging comments from a cast member that is NOT an expert in our particular need.  I have said this before, but my girls are old enough to know when someone is being unpleasant about T1D and if I can help avoid it, I try to.  These little people hear and see EVERYTHING!

After much family discussion, we decided that even though we could, we were not going to try to obtain one.  It almost felt like a challenge to T1D - no way was it going to stop us from having fun!

On the morning of our arrival to Magic Kingdom, our oldest daughter suffered one of the worst low blood sugars that she has ever had.  It happened in less than two hours after eating, driving into the parking lot, riding the tram to go into the park, watching the morning park opening ceremony and then, walking only as far as to the magic castle - when suddenly, she turned to me and told me that she thought she was going to pass out.

Quick blood sugar check and she was 41mg/dl.

That's her on the right and when the danger had passed to the point where we were just waiting for her to feel in control again, I snapped this picture.  She sat in that spot for almost an hour, trying to recover.  I even gave youngest daughter a package of Minnie Mouse tatoos to play with during the long wait.

Not a great moment in our world of blood sugars.

However, a DAS would not have helped us in that moment.  Even if we had a DAS card, this had nothing to do with trying to get on a ride or standing in line.  We were simply caught in the middle of the park with a low bg.  Yes, it was no fun and yes, I wanted to cry because it is absolutely heartbreaking to see my daughter in misery.   But a DAS would not have helped or fixed our situation.  Only glucose, some crackeers and a lot of time could help us.

The rest of the day proved to be better.  Oldest daughter forgot about her low and we pretended to.  Isn't that the way it goes, sometimes?

We did utilize the Disney Magic Bands and Fast Pass + extensively.  We also used My Disney Experience, a free APP, to check wait times at rides and shows.  If we didn't have a fast pass available, we checked to see which ride was less crowded and headed over there.

More than anything, it helped to stop, rest in the shade, check blood sugars frequently and enjoy snacks and regular meals while at the parks.  We also took advantage of making advanced dining reservations for times when we knew the kids would normally be eating.  For me in particular, I found that Disney was great about offering customized gluten free choices.  All I had to do was to speak up and a chef was brought right out to me to take an order.  Truly a wonderful service.

Even more importantly, for the first time on our many years of going to WDW, we also did not go to the parks every single day.  The very next day, we planned as a poolside recovery day.  The kids swam, mom and dad napped and everyone felt relaxed and rested.

Most of all, we can't wait to go back again next year!

Thursday, April 24, 2014

Airplanes, Pressurized Cabins and A Naturally Sweet Sisters Science Experiment

We recently went on our spring break trip to the World's Happiest Place - the house of the mouse!  I'll share more of that in our next blog post, but wanted to be sure to share what we learned about flying with insulin pumps.

After making it through security (Not a huge deal, but not one that I really like as TSA required a few pat downs of my husband and multiple swabbing of our hands, insulin pump and luggage) with our loads of carry-on luggage and settling into our tiny little airplane seats, the Naturally Sweet Sisters and I decided to embark upon a fun little science experiment.  

We wanted to see what the real effects of cabin pressure and plane take-off/landing are on insulin pumps.  

I had recently posted about airplane travel HERE and thought I should probably do a little of my own research before talking too much more about it.

This little one was so excited.  We haven't flown for four years and she couldn't remember the last few trips!

And by the way, did you know that Delta still serves cookies, pretzels and peanuts on their flights?  The girls were completely enamored with the beverage cart.  The flight attendents were so sweet and kind that each daughter was also given a little set of wings to wear home.   So even if you do not love the TSA, there is still plenty to adore once you are on the plane!

This one looks too much like a teen these days!  Eeek!

After we settled into our seats, we then asked each of the girls to remove their insulin pumps and hold them so that the end of the tubing was exposed.  

Our seat neighbor was a bit amused.  I wish I could have captured her expression of trying to determine what we were doing.

Youngest daughter's tubing and pump connector.

Since we were not all seated together, it was difficult to obtain pictures of both sets of tubing.  We also quickly discovered that my other seat partner, youngest daughter, was better at taking pictures than holding the tubing.

Hard to see, but a tiny bubble formed right at the tip!

The Object of this crazy disconnecting?  To determine if pressurized airplane cabins still force accidently insulin drips from Insulin Pumps.

The last picture is the closest that I could get to catching it on film.  Little bubble of insulin dripped right out as we ascended into the clouds.

Conversely, on the way back down, the pressure caused the exact same thing to happen again.

My best advice?  Be sure to disconnect.  No wants to deal with a low blood sugar right on the way to the rental car pick up or worse, while driving down unfamiliar roads or highways at the start of your vacation.

Thursday, April 17, 2014

Fearing The Airport

Child to Cherish Going to Grandma's Suitcase

Sometimes, I wonder if being tuned into the global T1D landscape on the internet is really a good idea.

Sure there is a wealth of information designed to help families but there is also, a ton of scary information to contend with.

For example, if anyone Googles type 1 diabetes and the Transportation Security Administration (TSA), like I recently did, there is plenty of interesting material to read.  Especially material based on flying horror stories.  Even though I am usually pretty relaxed about going through new adventures with my girls, like airport security - an ultimate trip in adventure!, reading those scary Google stories became enough to make my instinctive parenting alarms sound off.

There are tales of invasive pat-downs, scared children separated from parents, expensive, non-insured, insulin pumps that malfunctioned to the tune of $6,000 or more, after overzealous TSA employees placed them through damaging metal detectors and body imaging scans.

Not to mention that I don't want to put my girls through a security system that automatically believes all people are guilty until proven otherwise.  Having to explain why someone would think they have built a bomb is not a great conversation to have with little girls that still do fully understand the impact of 9-11.  It seems like forcing another adult sinister theme of how some people are truly evil in this world.  I would rather focus on the positives of caring souls that make the world a better place.

If you read beyond those grim airport tales, there are also stories of patients living with type 1 diabetes that sailed right through the airport security checkpoints and onto comfortable, albeit cramped, seats on the plane for uneventful flights to their destinations.

And yes, that is exactly what I am going for... a very smooth trip. I'll even overlook the zero leg room!

Our family will be flying shortly and it will be the first flight that I have had TWO children with type 1 diabetes also flying along.  Four years ago, we only had one daughter diagnosed.  I still remember the newness of children with insulin pumps and how many TSA agents weren't even quite sure what to do.  Today, however, there is an entire new world of medical progress and so I am sure that TSA agents have a better handle on how to deal with families like ours.

In any case, I have been doing my homework in order to prepare and prep ahead of time.

Three things that I have been advised to do are as follows:

1.)  Obtain a note from our pediatric endocrinologist with information on our daughters' diagnosis and medical needs, including use of an insulin pump and a continuous glucose monitor.

2.)  Call ahead and speak directly to TSA Cares, an open line to coordinate your medical needs with security.  

From the TSA Cares website:

TSA Cares Help Line

TSA Cares is a help line to assist travelers with disabilities and medical conditions. TSA recommends that passengers call 72 hours ahead of travel for information about what to expect during screening.
Travelers may call TSA Cares toll free at 1-855-787-2227 prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint. TSA Cares will serve as an additional, dedicated resource specifically for passengers with disabilities, medical conditions or other circumstances or their loved ones who want to prepare for the screening process prior to flying.  Travelers may also request a Passenger Support Specialist ahead of time by calling the TSA Cares hotline at 1-855-787-2227.
3.)  Upon packing, be sure to separate, the medical supplies from the rest of the luggage and declare it upon arriving at the security check point.  From TSA Cares, also declare medical devices and if you do not want to go through a metal detector or Advanced Imaging Technology (AIT), request a modified pat down at this point.  
Finally, if anything should arise where you feel uncertain, you can also ask for a Passenger Support Expert to be brought into the screening process.  The job of a Passenger Support Expert is to help assist families that have questions or concerns about screening with disabilities and medical conditions.   
If you are flying for spring break or saving this for summer vacation, have a great trip and try not to let the small seats bug you!

Monday, April 14, 2014

Whoops! Middle of The Night Lows

We have been working on blood sugars since the last A1c appointment.  The push is to try to keep blood sugar ranges tighter than they ever have been before.

Ranges like 80-120 for our oldest and 80 -140 mg/dl for our youngest.

All of the time.

It is a tricky balancing act, especially as the girls are well into a life of type 1 diabetes with a cumulative diagnosis of over seven years and who just a short while ago, were still considered little girls.

Now,  if you read this blog, you also know that they are in the middle of puberty and finding success with such a tight range is a huge challenge.

But I do see improvements in how they feel.  Oldest daughter tells me that she has more energy and youngest daughter is generally more even-tempered.  Both are positives.

That tight range is great and helpful, most of the time.

Sometimes though, the girls still go low.

Especially if there is a whoops during the day.  Like, 'Whoops, Mom.  I am so sorry that I forgot to bolus for that snack at school.'  Or 'Whoops, Mom, did you say 50 carbs?  I thought it was only 30 carbs!'.

Which then leads to a much higher than desired, blood glucose number.

With a tight range like that, it seems like the higher the whoops, the lower the low, shortly after.  And of course, the lows happen more frequently at night.  It's Newton's Law.  What goes up, must come down.  I think he just forgot to add, 'in the middle of the night.'

Which is NOT great nor helpful.  

Last night, I went into our oldest daughter's room after hearing the CGM alarm it's first low warning. BEEP!  Under 80 mg/dl.

On the face of the CGM, I could see a 77 mg/dl staring back at me.  Quietly, I confirmed with a blood glucose test and the meter matched with a close 75 mg/dl.

Oldest daughter promptly sat up after I gently touched her arm and without opening her eyes, dutifully drank her juice.

As she lay back down, she just reached for me and patted my arm.

'Thank you, Mom.'

Sweet girl.

In the most gentle of ways, she managed to erase all of the whoops so we can try again tomorrow.

Thursday, April 10, 2014

Throwback Thursday With A Hefty Dose of Foreshadowing.

I remember snapping this picture back in 2008.  They had spent the summer playing various forms of 'doctoring', with a heavy emphasis on Endocrinology.

It was the summer of borrowing plastic gloves and paper masks from the doctor's office and making complicated looking paper charts for the girls to customize with their stuffed animals vital signs.

During that summer, they decided that they both needed to be doctors (definitely not a nurse or a vet) and I remember trying frantically to find another medical costume when Halloween was too far away to be helpful.

It was a fun summer and as a result, the next door neighbor little girl even made up her own version of a cardboard insulin pump - just so she could be part of the t1d scene with youngest daughter.

But above all, what I remember most was oldest daughter being diagnosed later that year.

Monday, April 7, 2014

Logging Numbers

iPhone Screenshot 1

After the second child was diagnosed, our desire to log a second set of blood glucose numbers went right out the window.  

I say that because in all honesty, having to record everything your child eats or does during the day is monotonous at best.  No one that I have ever met says, "Recording blood sugars is so much fun!  I wish I could do it!"

Um, no.  CRA-ZY!

When the endo finally gave us clearance to do as we pleased with recording bg, we abandoned the hand-written notes for an easily downloadable meter.

That worked for another short period of time until we also realized that there were many times during the day that both of our daughters used the same blood sugar meter - with different needles of course.  Trying to sort out which bg went to whom, was a bit of logistical nightmare.  

After the review of our bg recording situation, we realized that there just isn't enough time in the day to micro-manage every single detail.  

It was at that point that we decided to log every single number into the insulin pump and on Sunday nights, to download those numbers for review.  

While it is still cumbersome and probably one of our least favorite t1d tasks, it works.  We get to keep a watchful eye on what is happening and make changes as needed.

But what do you do if you are on an injections or insulin pens or you can't/don't want to input each of the blood sugars into the pump?  I don't have all of the ideas, but from a conversation with some of my local friends, these ideas were tossed around.  I thought you might like to hear them.  

**  One of my girlfriends has a brilliant idea to send herself emails.  She simply pulls out her phone and messages herself as a reminder for later.  On that same note, my girls also like to text me bgs from school.  We use it as an opportunity to fine-tune anything that needs immediate attention.  They also sneak in some non-t1d talk from time to time too.  I love how connected we stay.

**  Another friend bought herself a beautiful journal that she can send with her daughter to school.  They both said that it was so pretty, neither one felt it was a chore to log blood sugars.  This would be great for a little boy too.  Just find the hobby that he is most interested in and either purchase a blank book or make one from some scrapbook paper.  

**  Finally, a newly diagnosed mom of a two-year old little girl, shared with me her Glooko App on her phone.  She explained that her husband also had the App installed and they loved being able to see blood sugar numbers as their baby-sitter input them. I haven't tried this App myself, but found this neat guide to all t1d Apps on the market.    Maybe there is one that is right for you?

Regardless of how you choose to log blood sugar numbers, I have found that just by doing so, you can help keep a good handle on how your child is managing t1d either with or without you.  

Saturday, April 5, 2014

Nifty T1D Bandages That You Can Find In The Pet Aisle

Vetrap by 3M

Recently, I discovered that there is a cool bunch of tapes manufactured by 3M that are self-sticking, sweat proof and water resistant, which is absolutely perfect for keeping infusion sets and CGM sensors on during summer days at the lake and the pool.

The really cool part is that these tapes are manufactured in bright colors and with adorable designs. The one pictured is from PetFlex and is made by Andover.  After we opened the package, it appears to be made exactly as 3M brand.

With blue stars too!  Adorable!

The price is reasonable too.  We paid 3.99 for the 3M and $2.99 for the PetFlex.

Oh, and in case you didn't notice, did I mention that these were designed for pets?

Yes, that is right!  Our furry, non-human friends!

However, thanks to 3M Vetrap and Andover PetFlex, our kids can be as comfortable as their pets while splashing around pool side with their medical t1d gear.

A few neat things about the product that have my kids thrilled are the self-sticking bandage material that does not need a product like UNI-SOLVE to reduce sticky.  All you need to do when removing is simply peel off the bandage.  The other neat piece is that when the girls feel like being private with their infusion site or Dexcom sensor, all they need to do is wrap a bit of the brightly colored bandage around their arm and no one will need to know what is underneath.  In fact, oldest daughter giggled and said, "I am going to be a trend-starter with this."  Who knows, you may see this at pools across the nation this summer!

I found a few other versions and loaded them into the Naturally Sweet Sisters Amazon Store.  You can check it out HERE.

We picked up our first set for our Spring Break get-a-way.  After, we real-life test it out, I will report back with results.

In the meantime, if you have tried this, I would love to hear from you.

Happy Spring Break!


Wednesday, April 2, 2014

394 And A Perfect Score

I don't know what a high blood sugar feels like.

I've only been able to read the vast array of symptoms such as being thirsty, having blurry vision, feeling weak or tired, unable to concentrate or feeling antsy.

My girls have also told me that they sometimes have sharp pains in their stomach, so much so that they want to lay their heads down and cry.  They tell me that they often feel so thirsty that all of the water in the world isn't enough to calm the dryness.

They also (embarrassingly enough) feel the need to go to the bathroom every few minutes, so concentration is out the door for most every task, until they find relief.  Almost like a clock, they explain that if they do not see their blood sugar numbers going down, it is difficult not to panic and worry about things like ketones or dehydration.

As I write this, I feel both an incredible amount of sadness that my girls have to go through this and also, a huge amount of pride that they manage so well, in spite of this.

Because yesterday, as a validation of the deep strength that they possess, even while battling t1d, this came home:


See that 394 in the top right corner?  Well, that is a 394 mg/dl.

See that 40/40 circled in blue?  Well, that is a perfect score on a math test.

See that type 1 diabetes holding her back?  Well, me either.