Last Night’s Phone Call and Other Dealings of a T1D Parent

Last night, around 10:30 pm, my cell phone rang.  I was actually holding the phone, about to power it down with 7% battery left, and a number I didn’t recognize popped up on the screen.  Who’s calling me at 10:30?  As a parent of a child with type 1 diabetes, you learn to just answer the phone.  And then came the words that sent my heart racing, “Hi Dayna, this is Michelle from diabetes camp.”

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Now Hannah’s been going to camp for 6 years, a remote place in the mountains of Colorado, where cell phones don’t work, there is no contact with your child for a week, and THEY NEVER CALL.  That’s the beauty of diabetes camp – your child is surrounded by med staff and counselors and doctors and other adults with T1D.  By the time you “drop your kid off” you have filled out 20 forms three months ago, had your endocrinologist sign off that your kid can go, and filled out 10 more forms in the last week.  As you arrive, you shuttle from station to station: nurses station to check for fever, non-diabetes med station, pump settings station, CGM station, pump supply station… So you feel darned good about leaving your kid in capable hands.

Hannah was fine, Michelle assured me, but her insulin pump was not.  The funny thing was she kept telling me it had a “motor error” and I kept thinking she was saying it had a “murder error”.  Either way, the pump was dead, the $4,000 device that keeps my kid alive.  Michelle, as it turns out, not only has T1D herself, but is a rep for Medtronic, the pump’s manufacturer.  She happened to have a spare pump that Hannah can use for the next few days, and gave me instructions to call Medtronic and have a replacement overnighted.  I assumed she wanted me to call in the morning, but no, Medtronic has a 24-hour 800 number and it is manned by Very Helpful People.  Hannah’s replacement pump will arrive the day she gets back, and the best part…it’s under warranty.

I started thinking about how the phone takes on a whole different sense of urgency when you’re a T1D parent.  When Hannah was in elementary school, the nurse would call me at least 3 times a week when Hannah’s readings were either very high or very low.  For years, my cordless phone and my cell phone were always within reach: in the bathroom, in the garden, while I was vacuuming….and at the gym, my cell phone was at the base of my spin bike so I could see it when it lit up.

Then there was the phone call from the endocrinologist with the results of her yearly screening for Celiac’s disease.  We never had that follow-up call until it came back positive.  That was a rough day.

All in all, I am more than grateful that my daughter is surrounded by doctors, school nurses, pharmaceutical reps, certified diabetes educators, endos….so many people working to make sure her life is good and healthy and practically normal.  And I promise to always answer the phone.


Sugar, Baby!

Remember Sugar Babies? Are they even still around? With two kids in braces, our home won’t be seeing anything resembling those chocolate-and-caramel candies for quite some time. However, with a T1D teen in the house, we have plenty of alternatives. And so I started thinking of the pros and cons of all the different treatments we can choose.

 

SMARTIES. I have to single these out as they were the original treatment we learned about when Hannah was first diagnosed. “Two rolls of Smarties are 15 grams of carbs!” The perfect amount, cheap, easy to chew, and for a long time our treatment of choice. Eventually, Hannah grew tired of Smarties and I was anxious to keep things interesting. Also, the wrappers were everywhere and once the rolls break open…. still, they don’t get stale and are perfect for teachers to have on hand in the classroom as a backup.

smarties

JUICE. This was our first alternative to Smarties. You may find, as we did, that your child responds more quickly (i.e. blood sugar rises faster) to certain treatments. In Hannah’s case, juice is a good choice for a very low blood sugar. It’s also better at night, when she is tired, not hungry, and doesn’t want to eat anything. We look for brands that are in the 15-20g of carb range, though if she’s needing two juice boxes to treat a low then a higher carb juice on hand is nice. (Side note: Tropicana’s Trop 50 has less sugar, hence less carbs, which I like for the non-treatment occasion. Like breakfast.) Juice boxes or pouches do take up more room in a bag or purse, are heavier to carry, and can spill while open.

juice box

GLUCOSE TABS. It’d be nice to have a 15g glucose tablet, wouldn’t it? For some reason, they are about 4g of carbs each, so you need at least four tablets for an effective treatment. The big bottles are bulky, but you can also get them in a slimmer tube. We keep a bottle in Hannah’s nightstand. Kids aren’t as likely to overeat them and they work pretty quickly.

glucose tabs

OTHER CANDY. It’s not effective to use candy that contains fat, as the fat slows down the absorption rate.  This is why chocolate is not an option treating a low.  We also found out that just the 2g of fat in a pack of Skittles was keeping Hannah’s blood sugar from rising.  I do like saving Halloween candy as a treatment …. the variety is fun and really, diabetes needs to lighten up, right?  Of course, the downside to treating with candy is having a kid eating too much at once, instead of just the amount needed to treat a low.  With many lows, a kid could potentially eat candy all day long.

Sometimes we get the large container of Jelly Bellies or other tiny jelly beans (1g of carb each) and I’ll portion out 15 jelly beans in plastic zipper bags.  This is better than having a shaky kid reach her hand in the jar and frantically grab a handful!  If I’m feeling particularly creative, I’ll sort them by blues, reds, greens, etc.

halloween candy

CAKE GEL:  Very portable and works very quickly.  Cake gel is a must if a kid is to the point of being too shaky to chew or swallow.  Really, it’s one step away from needing glucagon.  If your child needs assistance, rub the gel on his or her gums and it will absorb even faster.  One important note about cake gel that we found out while skiing:  not all tops are screw-tops.  Some brands require scissors to snip off the top.  Do you know how hard it is to find a pair of scissors in a ski lodge?  After that incident, we started carrying a pair of scissors in the car and also made sure the brand of cake gel we bought has screw tops.

cake gel

GLUCAGON:  The mother of all treatments, this is an instant jolt of sugar to the bloodstream.  To me, that little red or orange case invokes a bit of fear, too …. fear that I might not be calm enough to use it, fear thinking about Hannah being low enough to need it.  So we keep all expired kits and practice!  Even Hannah’s younger sister gets a turn, injecting the fluid into the vial of powder, carefully mixing the contents, drawing up the shot, and pressing the plunger.  Did you know that in a pinch you can also use less glucagon to treat a “regular” low, i.e. if you are somewhere without other treatments?  Check with your endocrinologist or certified diabetes educator as to how many cc’s could be used in this case.

glucagonWhat is your go-to treatment for low blood sugar?  I’d like to know!

 


Why All the Fuss About Diabetes Camp?

The first time I learned about diabetes camp – there is such a thing? – was right after our daughter was diagnosed.  Hannah was 8 years old, and we were at our first appointment with the Certified Diabetes Educator aka The Angel.  After reviewing everything that we learned in the hospital (“Wait, we have to carry this red glucagon thing with us all the time?”), The Angel gave us a postcard showing kids canoeing, ziplining and all having the best time ever, ALL WITH DIABETES.  Latching onto this possibly positive aspect of a life-threatening disease, we promised Hannah she could go to Camp Colorado, which happens to be practically in our backyard.  If you are not familiar with one of the nationwide American Diabetes Association camps, do your kiddo a favor and give it some thoughtful consideration.

First, know that these camps are POPULAR.  I know now that registration for camp in July opens up at the end of March and mark my calendar accordingly.  We actually missed the first sign up that first year Hannah was diagnosed and she never made it off the waiting list.  Now I know …. and she reminds me as well.

Second, there is a serious amount of online paperwork you will have to fill out.  These people take the fact that they are caring for your child very seriously, and you’ll need doctors’ information, A1C results, permission from a CDE or endocrinologist, pump serial numbers, type of insulin …. the list goes on.  The neat thing is that you can set up an online account and a lot of information is saved year to year.  When it comes down to it, you want the camp staff to know everything about your kid.

Third, diabetes camp is affordable.  Although the actual cost per camper is very expensive – due to having physicians and nurses on staff – a lot of the cost is underwritten by fabulous donors and sponsors so that the cost to you is in line with a typical week at camp.

Fourth, this is one of the few times that you as a parent can take a breather from diabetes.  Not only can you voice any questions you have during a conference call ahead of time, but every minute of your child’s day at camp is monitored, from the line up of blood sugar checks before meals, to the nightly Juice Fairy visits, to the adjustments in insulin to compensate for the amount of activity they’re doing.  And when you pick up your camper, one of their counselors will review their blood sugar log with you.

Fifth, this is an amazing learning experience for your child.  Do you long for the times before the diabetes diagnoses when your son or daughter was like everyone else?  At camp, they are like everyone else.  Everyone checks their blood sugar.  Everyone has lows and highs.  Everyone gets a shot or a pump bolus.  Many kids have to eat gluten-free.  And the camaraderie encourages kids to try a new injection site, or to wear their CGM.

And finally, if you have a long drive home, prepare for non-stop chatter about how much fun your child had, and about terrific counselors, and making new friends, and things like the Blob and the Vomitron.  And about next year.

 


We Told Her She Could Do Anything, or What Have We Got Ourselves Into?

My daughter was 8 when she was diagnosed with type 1 diabetes.  One of the glaring signs that something was wrong with her – besides the excessive drinking – was that she looked so fragile.  Hannah had been riding horses for 4 years, grooming them, putting on their tack, jumping them over rails, handling temperamental ponies …. and all of a sudden I was worried she was going to fall off.  As soon as we had the diagnoses and started the intense learning process of caring for a child with T1D, we reassured her, “You can still do anything!  Well, you can’t be a commercial truck driver or serve in the military, but you can still ride horses!”

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Boarding a horse is so expensive, we ended up moving to “the country” so we could support her passion.  And I had to learn how to hook up a trailer, load a horse and tow it to town.  Not an easy feat for this child of the suburbs. Then because the all-encompassing horse care apparently wasn’t enough, Hannah started showing an interest in riding motorcycle trials.  If you haven’t seen this, it’s pretty darned cool.  Riding a dirt bike that doesn’t have a seat, the rider has to slowly ride obstacle courses over rocks and logs, while standing, without putting his or her foot down.  Hannah’s inherent balance from riding horses gave her an advantage in riding trials.  And now we have a garage full of dirt bikes, about 20 yards from the horses.  But how could we not support our kid that wants to be active, let alone a great ambassador for learning about T1D?  She can do anything!

sipapu

 

Which brings me to school.  My husband, Joe, is of German descent, still has family in Germany.  So it seemed like a natural choice that our daughters chose to learn German in junior high.  “Learning German is great!  You get to go to Germany!”  (i.e. “You can do anything!).  I can’t quite remember when it occurred to me that sure, she can go to Germany, but um, one of us needs to go with her.  Yes, there would be a teacher and parents with her, but my mind couldn’t even fathom sending her to another country unless accompanied by her parent(s).  Or maybe her endocrinologist or diabetes educator.

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Here are some things we did to make the trip overseas a success and diabetes-related issues manageable:

– Had a note from our CDE that Hannah can carry glucagon, syringes, insulin, etc.

– Packed our completed copy of “Type 1 Diabetes and Babysitting” that has all of her basal and bolus ratios, and walks a person through what to do for lows and highs

– Kept her insulin in its original prescription box

– Had 2 identical bags of diabetes supplies, including insulin, insertion sets, syringes and glucagon, one for Hannah and one for Joe, that did not get checked as baggage (insurance in case a backpack was lost or stolen)

– Temp basal (more insulin) for long plane and train rides

– Changed the time on her pump as she went through each time zone so her basal rates would (in theory) stay the same –

Set up international cell phone plans for outings where Hannah and Joe were not together.  Downloaded free texting apps such as WhatsApp

– Packed a lot of gluten-free alternatives as Hannah has Celiac’s Disease


The Zen of Staying Organized with Diabetes

Last week, as we were preparing for the first camping trip of the summer, I realized that we are in a pretty good place in terms of diabetes organization.  I think it is so important to be on top of supplies, current prescriptions and emergency instructions so that when you are blindsided with a 400+ blood sugar reading, or a 40 blood sugar reading, at least you and the people around your type one kiddo can take care of him or her.  So what can you do to get organized and stay organized?

1.  Have a central location for all of your supplies.  It might be a closet, a cabinet, a shelf, a plastic tub …. whatever you can designate as that sacred space for only diabetes-related items.  This is where you store everything that is not being carried with your child:  pump infusion sets, reservoirs, syringes, insulin pens, alcohol wipes, lancets, test strips, glucagon, batteries, treatments, protein snacks, cake gel, reference materials.

You may choose to keep insulin here as well if the temperature is around 70 degrees.  We keep the current bottle on the counter with our daughter’s meter, while unopened vials are stored in the refrigerator.

2.  Keep your supplies well-stocked and up-to-date.  Both spring and fall (before school starts) I check glucagon kits and make sure they are not expired.  When we open the last box of reservoirs, infusion sets or test strips, I immediately order the refill so we always have enough.  This is one thing I just do not put off!

3.  From our book Type 1 Diabetes and Babysitting: A Parent’s Toolkit, I made a 4×6 notecard from the chapter, What to Carry With You and When.  This notecard is posted above our supply shelf, and when we prepare to go on a trip or anywhere an hour away from home, I simply refer to this card to quickly make sure we have everything we need.

4.  Have insulin doses updated and easily found.  Again, in Type 1 Diabetes and Babysitting: A Parent’s Toolkit there is a place to quickly jot down either pump settings or insulin schedules.  This is REALLY handy when you are out of town, have to call the endocrinologist and they ask, “What are your child’s basal rates?  Carb ratios?”  Help can come much faster when the information is at your fingertips.

Being organized when it comes to diabetes can not only affect your child’s health, but it helps everyone in the family be a part of your child’s care.  And THAT is a very good thing ….


“Once upon a midnight dreary, while I pondered weak and weary ….”

mother and son sleepingSometimes I feel like Edgar Allan Poe knows my soul, as I stumble out of bed to check Hannah’s blood sugar in the middle of the night.

There’s been a progression of the necessity for these midnight checks.  When she was first diagnosed, this whole world of diabetes was brand new to us and our lack of knowledge meant we just did what we were told.  Night after night, I crept into her room, hoping she was still breathing, relieved every single night I could wake her and check her blood sugar.  I’d jump out of bed if the baby monitor picked up the slightest rustle.

Then we started to see patterns in her numbers.  Low at bedtime?  Give her a snack!  Remember the carb counting plan, i.e. 15-30 carbs for a snack?  We got around that with CarbSmart ice cream mixed with peanut butter.  And although our Certified Diabetes Educator gave us permission to forego the midnight checks, we still had that fear of “what if….?”  It only takes one story of a child who had a seizure in the middle of the night to have that nightmare implanted in your brain.

After a while, I felt fortunate that we didn’t have to check Hannah at all in the wee hours…. and then technology reeled us right back in.  New pump?  Gotta check every few hours!  New sensor?  Have to calibrate!  I don’t know about your kiddo, but Hannah  is impossible to wake up once REM sleep sets in.  Our middle of the night checks take at least 30 minutes.  Sometimes more when I end up falling asleep in her bed.

What do you do when you have a sitter, or a grandparent, caring for your child through the night?  Do you every feel like you’re imposing on them?  Or like you’re being thought of as overprotective?  The month before we entered the world of T1D, my motherly instincts were screaming, “Something’s not right with your girl!”  Thankfully, I listened to them, and you should, too.  If your gut is telling you that you – or a caregiver – should wake up your child and check them at 3am, because it’s in the best interests of your child, then do it.  (Now, there IS a time to let loose the reins a little, but that’s another topic…..)  There are some things you can do to make things easier for your babysitter:

  • Have an alarm clock set to the designated time.  I’ve found it helpful to have everything ready ahead of time – meter, treatments, snacks.  No sense in running up and down the stairs at 3am.
  • If the caregiver is going to be drawing the blood – as opposed to waking the child – let them know the best place to poke and make sure they practice ahead of time.  The middle of the night is not the best time to figure this out.
  • Talk with your child about the process.  “When Maggie wakes you up in the middle of the night, please help her check your blood sugar.”  Sometimes just planting that thought makes things go smoother.

I meet parents all the time who check their child’s blood sugar nightly after years of being diagnosed with type 1 diabetes.  My heart goes out to you, because I completely understand why you have to do this.  Here are some ideas that may be new for you, or just different:

Snacks help prevent low blood sugar levels and provide energy between meals. Typical snacks contain 15 to 30 grams of carbohydrate. Below are some low-fat snack ideas to try.

Snacks containing 15 grams of carbohydrate:
1 medium apple or orange
18 small pretzel twists
2 popcorn cakes
1/2 small bagel with fat-free cream cheese
3 cups air popped or low-fat microwave popcorn
8 oz. or 1 carton light yogurt
4 to 5 vanilla wafers
5 to 6 saltine crackers
1 1/2 graham crackers
1/2 cup low-fat ice cream
2 Tbsp raisins
1/2 cup unsweetened applesauce
1/2 cup sugar-free pudding
1 fruit roll-up
1 fruit juice bar

Snacks with 30 grams of carbohydrate:
1 small bagel with fat-free cream cheese
1 oz baked tortilla chips with 1/4 cup salsa
1 low-fat granola bar
1 large banana or 2 pieces of fruit
4 oz individual fruit cup and 1 cup skim milk
1 cup Cheerios with 1/2 cup skim milk
1/4 cup dried fruit
2 caramel corn cakes
1 cereal bar
15 baked potato chips
14 animal crackers and 1/2 cup skim milk
2 fig cookies and 1 cup skim milk

  • Encourage your child to eat fresh fruit rather than juice as a routine snack (unless blood sugar is low).
  • Add sugar-free flavorings (such as sugar-free cocoa or milk flavorings) to milk, if needed.
  • If your child is still hungry after the snack, offer water, popsicles made with diet pop or Kool-Aid, or carrot sticks or celery in a dish with cold water and ice cubes.
  • If low blood sugars happen repeatedly at the same time of day, or if your child exercises for a long time, a snack may help prevent low blood sugar.
  • Bedtime snacks are important for blood sugar control for children with type 1 diabetes. A snack that includes carbohydrate and protein helps to keep up your child’s blood sugar level through the night. A typical bedtime snack should include 15 grams of carbohydrate and 7 to 8 grams of protein. This amount can change based on your child’s age, blood sugar levels, and activity throughout the day.
  • Children who have had an active day should have a bedtime snack no matter what their blood sugar level.

Examples of foods containing 15 grams of carbohydrate and 7 to 8 grams of protein include:
1 slice of bread plus 2 Tbsp peanut butter
1 6-inch tortilla plus 1/4 cup grated cheese
6 saltine crackers plus 1 string cheese
3 cups popcorn plus 1 oz of meat or 1 egg
12 small pretzels plus 2 Tbsp sunflower seeds
3/4 to 1 cup cereal plus 1/4 cup peanuts
5 vanilla wafers plus 1 cup milk*
8 oz of no-sugar-added yogurt*.
*Yogurt and milk provide about 15 grams of carbohydrate as well as protein.

It is good to choose a solid food at bedtime. Solid foods will churn around in the stomach before passing to the intestine where most food is absorbed. Milk or yogurt alone might pass quickly through the stomach, but milk and cereal or yogurt and crackers might pass through more slowly. Adjust carbohydrate amounts based on what the blood sugar is at bedtime. Here are some guidelines to follow:

At bedtime, if your child’s blood sugar is:

  • 150-200 mg/dl (8.3-11.1mmol/L): Give your child 15 to 20 grams of carbohydrate and 7 to 8 grams of protein.
  • 100-150 mg/dl (5.5-8.3 mmol/L): Give your child 25 to 30 grams of carbohydrate and 7 to 8 grams of protein.
  • 100 mg/dl (5.5 mmol/L): Give your child 30 to 45 grams of carbohydrate and 7 to 8 grams of protein.

What is in a name?

The “Horse” in Science Horse Productions

What do horses have to do with diabetes?  In our family, nothing.  And everything.
Our daughter, Hannah, became the quintessential horse-crazy girl when she turned four.  (Before that, she started a tiresome campaign to get a cat and when I told her we couldn’t, she shifted to all things horses.  If I had only known….)  It wasn’t until this horsey thing that I realized that she inherited the one-track mind from Joe:  latch onto an idea, talk about it to anyone who will listen, ALL THE TIME, until they give in.
Of course, after 3 months, we gave in.  I contacted a local barn, spoke with a trainer, and that Christmas we gave Hannah a package of horseback riding lessons.  The trainer Judy, a tiny woman with a large personality, thought we should start out slow.  After all, Hannah was only four.  Now, keep in mind, that I knew absolutely nothing about horses or riding. We showed up with Hannah wearing jeans and her cute little cowboy boots that she wore everywhere.   I’m pretty sure Judy, who teaches English riding as well as dressage, rolled her eyes at me.
After getting a step stool – she seemed so tiny! – Hannah learned to groom a sweet paint horse and soon she was tacked up and out to the arena.  Hannah got it right away.  In 30 minutes, she soaked up the basics of walking, trotting and posting.  “Did you see that?  She already understands posting!”  Judy seemed pleased.  As for myself, I had some pertinent questions like, “Do they always just go in a circle?”  “Am I supposed to learn how to tack up the horse?”  “How am I going to keep my two-year occupied while we’re here?”  All in all, the lesson was a success and I knew we were in trouble when I asked Hannah, “Well, what did you think?”  She replied, “It was too SLOW and too SHORT.”  Oh boy.
Fast forward four years to the diabetes part of the story.  We all have our heart-wrenching tale of how our child was diagnosed, don’t we?  I’m sure we all have a lot in common here.  Hannah was starting to look so skinny (“She’s just going through a growth spurt!”), drinking 32 oz. of water at school in the mornings (“She’s been listening to me talk about being healthy!”), going to the bathroom a lot (“Well, she IS drinking a lot of water….”).  Knowing as much about diabetes as I did horses – nothing – I had no idea of what was to come.
It wasn’t until we went to her weekly riding lesson that I started to think something was wrong.  This kid had been diligently riding for four years now, learning to canter, jump and compete in horse shows.  In first grade, she learned to put the bridle and bit on the horse, something you need a bit of confidence to do, something I still can’t do to this day.  When I asked her how she figured it out, she said, “I just looked at the pictures in my horse books and did it.”  But now, seeing her looking way too frail on her horse, worried that if she fell off that she might just snap in two, I really started to worry.
And here’s where I’m sure our stories converge:  the trip to the pediatrician, the diagnosis, the hospital stay with blood sugar numbers too high to register, the diabetes educator, the endless amount of paperwork, the shots, the log book, the sleepless nights.  And through it all, the resolve that Hannah’s life will be normal.  Diabetes may be relentless, but our message is louder.  You can do anything.  You can ride horses if you want, even if I have to camp out with Smarties and a meter.
Today, Hannah is almost 14, owns and cares for three horses, rides whenever she wants to, and diabetes will never, ever change that.
– Dayna