Friday, October 26, 2012

Insanity 2

Last week, I complained a bit about how in the diabetes world, A + B does not always = C.  Mysterious things happen for what appears to be no apparent reason.  Sometimes in retrospect, we can look back and realize the cause: an impending illness or growth spurt.  Sometimes we'll never know.

We're forced address these issues with whatever information is at hand, even if it is insufficient.

Today, for example, my daughter called at lunchtime (still 10:17 a.m.).  Her blood sugar was 97, but she said she felt like she was dropping.  I suggested she eat first and bolus later, subtracting a few carbs when the time came.  Forty minutes later she called back.  She still felt low so tested before bolusing. She had eaten 51 grams of carbohydrate and now had a blood sugar of 81.

What did I think she should do?

I had no idea what she should do.  Yet I had to come up with a plan for her so she could move on to her social studies quiz. 

Once again, I was faced with solving a medically critical math and logic problem while missing a significant amount of critical information.  My tactic was to err on the side of caution. I heard clearly in my daughter's voice that she felt low and that it was unsettling.  I also reasoned that she could test and correct a resulting high blood sugar before it became astronomical, but that a low blood sugar during the variety of tests and quizzes scheduled for the afternoon would be more problematic.

"Bolus half the carbs. Check in 20 minutes to make sure you're coming up. Or sooner if you feel worse."

It turned out o.k. In 20 minutes she was headed up. She was 180 at 2, and 144 when she got home.

I guess I did the right thing.  I just don't know how.  And I don't know why I had to do it in the first place.

Wednesday, October 24, 2012

Big Blue Crash

We'd just finished a big family dinner which included a very rich dessert.  There was fun music on.  The grown-ups were washing the dishes. 

"I should do the Big Blue Test," my daughter said.

The Big Blue Test is described on its website as follows:

The Big Blue Test is a program of the Diabetes Hands Foundation that encourages people with diabetes to test their blood sugar, exercise for 14-20 minutes, test again and share their experience on BigBlueTest.org. For every test, people with diabetes in need receive life-saving supplies through Big Blue Test grants that are awarded to humanitarian diabetes charities in the US and around the world, made possible thanks to the program sponsor.

In 2012, Roche Diabetes Care, makers of ACCU-CHEK® diabetes products and services, sponsors Big Blue Test once again, to help us touch even more lives. Be part of the 20,000 people who will do the Big Blue Test this year.

Some good exercise for a good cause sounded like a win-win situation.

"O.K.  You've got to check first and after."

She checked.  "I'm 123." 

That seemed a little odd after the big meal we'd just finished, but I figured she was on her way up.  She went off to have her own little dance party in the living room.  The kitchen timer was set.

Fourteen minutes later, the dishes were about done.  She checked again.  "I'm 48."  Juice was administered and the numbers were logged in to the Big Blue Test website. 

She came up very slowly.  Ten minutes later, she was 58.  More juice.  Ten more minutes.  71.  More juice.  Were we overdoing it?   Perhaps, but bedtime was nearing and I preferred to give a little extra juice and correct later, than to wake her up in an hour. 

An hour after starting to dance, she was back up to 102 and ready to get tucked in.  Later checks reassured us the numbers had evened out.

We proved the Big Blue Test's premise that exercise lowers one's blood sugar.  More importantly, by submitting our results we generated a donation to help people with diabetes here and around the world. 

We'll do it as many times as we can between now and its conclusion on November 14th, World Diabetes Day.  I encourage you to do so as well.  Our participation will help generate funds for some fabulous programs.  And focusing on the effect of exercise on blood sugar might give us some helpful insights as well.

To participate, visit www.bigbluetest.org.



Monday, October 22, 2012

Walking to Cure Diabetes

Our little family walk team participated in the Juvenile Diabetes Research Foundation's Walk to Cure Diabetes this weekend.

This was our 9th annual walk.  I suppose it was the 6th or 7th year my daughter walked, having the advantage of a stroller or a wagon for the first few years. 

Our first JDRF walk was about 10 months after my daughter's diagnosis.  We chose a walk in a big city.  Despite the pouring rain and the screaming toddler who clearly thought we were torturing her, it was transformational experience.  We had found a local support group near our home for parents with Type 1 kids, so were fortunate not to be as isolated as some families are after diagnosis.  Yet at this walk, there were several thousand people gathered with the common purpose of finding a cure for this maddening disease we had found ourselves living with.  As we walked, there were people as far as I could see, all of whom were walking 3 miles in the pouring rain because they cared so deeply about a cure.  To this day when I feel beaten down by this disease, I bring that image to mind.

We've walked in several places since then, and I was even part of a walk committee for a small event near our old home.  Each year brings its own meaning.  Sometimes we're bouyed by the  supportiveness of the friends and family who walk with us, or by the notes they send with their donations.  Other years, we're moved by something that's said at the walk kick-off ceremony or in conversation with others attending.  This year my daughter's continued expression of how excited she was to participate drove our enthusiasm.

Every year, though, we set out amongst a sea of people all of whom are walking with great purpose towards the same goal.



A cure.

Friday, October 19, 2012

Insanity

Albert Einstein is said to have defined insanity as  "doing the same thing over and over again and expecting different results."  Those of us in the diabetes community would twist his words a bit. 

To go truly insane, try doing the same thing over and over again and getting completely different results.

Every Thursday for three years now, my daughter has taken a ballet class at 5 p.m.  The class is the same length and includes a similar combination of exercises each week, in about the same order.  The degree of difficulty has increased over the years, but more in terms of balance and flexibility than intensity of exercise. 

Every Thursday she has an after school snack around 3 or 3:30 and save the occasional outlier, begins the class with a blood sugar in the mid-100's.  We go for stretches where that blood sugar holds nicely through the class, with a slight decline of maybe 20-30 points, but nothing significant. 

Then for no apparent reason, the class starts to tank her.  Last week, I thought it was the new site.  The week before I thought was a fluke.  Three weeks in a row seem to point to a new pattern.

She started yesterday's class with a blood sugar of 120.  For a little insurance, she chomped a glucose tab before she headed in the door.  A little snack might have been preferable, but none was at hand. She finished the class at 49.  She'll need a temporary basal rate and/or a semi-substantial snack next week before she begins dancing. 

This has happened before with ballet. We change our pre-class diabetes routine and it works for a few weeks or a couple of months. Then suddenly the numbers will start to creep up during class instead of down.  We'll stop the temp basal or the pre-class snack again, and she'll begin to come out even. 

When I create my revolutionary giant spreadsheet of all possible blood sugars cross-referenced by all possible physiological and environmental factors, cross-referenced by daily routine, I might find an answer.  I could find this issue correlates with growth spurts, a concurrent preference for eating apples, the atmospheric conditions, or when the site was last changed.  It seems just as likely I'd find no cause at all.

It's one of those many diabetes situations to which all I can do is react.  We'll put the stop-gap measures in place which are necessary to keep her safe, and keep checking to see if they've worked. It's a most maddening aspect of this disease.  A + B doesn't always = C.  And the factor which led to a different outcome is often a mystery.

As we left the dance school yesterday, my daughter lamented the situation, but for different reasons.  "I like it best when I'm 75 or 80 when we leave.  Then I can take one of the lollipops from the front desk for the ride home."  A worthy goal for next week, indeed.



Wednesday, October 17, 2012

The Sleepover

The possibility had been brewing for a while.  A sleepover.  At somebody else's house.  It sounded luxurious and terrifying all at the same time.

At the end of the summer, we made it happen.  As part of a friend's birthday weekend, she wanted my daughter to stay overnight at her house.  Could she?  A few factors made us say yes.

1. Of all of my daughter's friends, this one lives closest: one block away.  In case of emergency, we could be there in a flash.  And in terms of every-kid issues, cold feet at bedtime would require only a very quick trip to retrieve her.

2. We've known this family since long before my daughter was born.  They know her well.  She's comfortable in their home. They know the questions to ask before she visits for a meal.  They're comfortable with her diabetes routine.  They wouldn't hesitate to call us at any time for any concern.

3. We'd been thinking about this possibility for a long time.  By 5th grade, most kids have slept over at somebody's house.  We couldn't hold her off forever.  So I had a game plan in my head which we were able to implement.

How did we do it?

I brought her over at 5:30 and spent 20 minutes in the kitchen going over the dinner, dessert and breakfast menu.  I made copious notes for my daughter on portion sizes and carb counts.  Then I kissed her goodnight.

As is the way of diabetes karma, it had been a day of wild blood sugar numbers.  My game plan was to set her up for a bedtime blood sugar in the high 100's so we wouldn't have to worry about the lack of a 2 a.m. blood sugar check, but at this point we were reduced to troubleshooting. She had strict instructions to text us with each check so we could help her address any more outliers.  Or so we could rest easier knowing things were evening out.

Neither girl was one for staying up until all hours, so at 10:30, I got a text. 'Bedtime.  BG is 110.'  Ordinarily, that would be good news, but with no middle of the night check in the works, I had her consume about 15 carbs before going to sleep.  Not ideal diabetes management, but the alternative of walking a block up the hill at 2 a.m. and breaking an entering seemed less desirable, so it's what we did.

She woke up early, as she tends to do.  I was already wide awake, willing my phone to chime, when she texted me at 6:45.  Her blood sugar was 180, and she was reading her book until her friend woke up.  She was o.k.

The luxurious parts of the night were fun. My husband and I enjoyed a leisurely dinner, with wine we'd been saving for a special occasion. It was a gorgeous night to sit in the back yard. It felt very strange to be left home alone. But it was a long night, hard to completely enjoy with a cell phone clenched in one hand at all times. I can't say I slept well. Once I heard from her in the morning, I was able to relax a little to enjoy my coffee and newspaper in peace.

My daughter had a great time, and wants to sleep at other friends' houses now. The second sleepover is coming up in a couple of weeks, at another old and trusted friend's. I'm the weird mom who hopes they stay up late.  I'd love a text of a perfect midnight blood sugar.  Sleep would come easier then.

Monday, October 15, 2012

What Happened?

The call from the nurse's office at 2 p.m. started the mysterious chain of events:

My daughter's blood sugar was 70 after gym, having started at 208 with no insulin given for a correction.  I suggested eating her 15 g. snack and checking again before walking home.

At 3, it was up to 294...an extreme jump.  Uncertain of the cause of this high, and factoring in the coming walk home, I advised giving a little over half the correction.

After a 15 minute walk, she arrived home with a blood sugar of 358.

We made a site change the first order of business.  The cannula area appeared dark red and somewhat crusty.  I'd never seen one quite like it.  When I pulled it, it turned into a gusher.  It required a clever yoga move by my daughter to get her site area above her heart, but this basic first aid tactic did stop the bleeding and allow us to continue.

New site nicely inserted,  I determined that this grusome looking site had simply conked out, causing all of these blood sugar issues. I delivered a hearty correction for the 358 plus a few goldfish crackers. 

My daughter was able to move on to homework, but we lost a precious 20 minutes of our busy Thursday afternoon to diabetes troubleshooting.  Math homework was done in the car on the way to ballet.  Typing of the short story would have to be finished after ballet and dinner, in lieu of watching the baseball playoffs. Very sad.

About 40 minutes into the ballet class, she was next to me on the bench outside her studio.  "I need to check."  She was 49. 

"I guess the new site works," I muttered, shoving the straw into the juice box.  She sat and slurped.  She valiantly returned to her class and participated, resting on the window ledge between exercises.

What happened?  I wish I knew.  There are several possible scenarios:

The site was obviously shot, but maybe not as completely as it looked. Perhaps there was more insulin on board than I assumed when I gave the correction?

Maybe some of the high was from the bad site, but some was from another cause.  Perhaps she was lower than 70 sometime during gym and had a rebound reaction?  Gym or a math quiz might have prompted an adrenaline rush which spiked her blood sugar?  In either case, it would have been prudent to be more careful with the correction.

Maybe our correction factor is way off for that time of day?

Trying to complete a complicated math and logic problem with about half the possible information is nearly impossible.  If we're lucky, we guess the missing information correctly and solve it accurately.  Just as often, we'll guess wrong and have to hope that missing a little bit of ballet class is the worst outcome we'll see.





Thursday, October 11, 2012

Hungry

The phone rang at 10:45 a.m., flashing the school's number on the caller i.d.  It's always with a sense of dread that I answer calls from school.  But, of course, I do.

"Mommy?"

"Yes...hi."  (Who else would be answering?)

"I finished my whole lunch."  (Brunch?)

"O.k.  Good?"  (I was struggling to get the tone.  Was this good news or bad?)

"I'm still hungry.  And the nurse has some pretzels I can have.  But I'm not sure I can finish the whole bag.  And I don't know whether to eat the sticks or the twists. But I'm really hungry.  And I have art club after school that I want to stay for. And then I'll be really, really hungry."

I cut her off before she got too worked up, "O.k.  Look at the label for the twists...they're probably easier to count than the sticks.  How many carbs in a bag?"

"23."

"How many pretzels are in there...open it up and count as best as you can."

"Looks like about 20."

"Ok...well take them and eat what you can and come back and bolus 1 for every pretzel. That should be close enough."

"Ok."

"I'm glad you're hungry!  And make sure you say thank you for the pretzels."

"Ok."

At 11:20, the phone rang again.  School.  "Mrs. Osborne, everything's ok. In fact, I thought I'd call with good news for a change...she finished the pretzels.  I'm so glad she's getting her appetite back."

Me too.  And thankful for the nurse's support, and for how nice her friends have been keeping her company on her many treks to the nurse's office during these first weeks of school.

My wish to provide a balanced brunch snack-like meal which can fill her up is complicated by her aversion to 'cold cheese,' and her wanting to lunch with three friends who are allergic to peanuts. This week we're trying yogurt tube + grapes + crackers or pretzels.  I still contend the cafeteria should serve eggs and toast. 

 

Tuesday, October 9, 2012

Walking For A Cure: My Daughter's Letter




Dear Friends and Family,

On Saturday morning, October 20th, my family will be participating in the JDRF Walk To Cure Diabetes.  The Juvenile Diabetes Research Foundation funds research towards better treatments and towards a cure for people with Type 1 Diabetes.

Lots of things in life are hard when you have diabetes. Here are my top 10 reasons why I want to get rid of it:

1.       I have to visit the nurse at school all the time.

2.       I have to carry around all my supplies everywhere I go.

3.       I can only eat candy on special occasions or when I’m low.

4.       When I’m eating, I have to keep track of all the food I eat so we can bolus insulin for it.

5.       I can only drink juice when I am low.

6.       I have to be cautious about what I do and when.

7.       Sometimes I can’t do things other kids can because of my blood sugar.

8.       I know that lots of other people around the world are going through the same thing I am, and I want them to know they are being thought about and cared about.

9.       Lots of people don’t understand what many people all over the world are going through.

10.   Some people don’t really think about all the people all around the world and don’t realize that donating to the cause (JDRF) could help find a cure!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

If you’d like to walk with us, let us know.  It would be fun to have some friends there with us.

If you’re able to donate to our team, you can do that too!  Just click here.

Thank You,

 (My Anonymous Daughter)

Diagnosed with Type 1 Diabetes on 12/21/02, when I was 13 months old

Monday, October 8, 2012

504 Resources

Last week I met with our school's 504 team and finalized my daughter's plan for this year.  In the past these meetings were somewhat routine.  Going into a new school, with a more complicated schedule and a whole new cast of characters, I felt it important to do my homework and enter the process prepared.

Below are a few resources which might be helpful to parents who are entering the 504 process for the first time, or who are looking to make some significant changes or updates to one which is in place:

The American Diabetes Association has a Safe At School campaign.  This includes a publication which they will send to you and/or your school.  It provides comprehensive information about all kinds of diabetes issues which could arise and ways to handle them.  The Safe At School section of the website provides links to additional staff training resources as well as sample 504 plans, and good advice about working with staff to obtain the best support for your child at school.  There is also a very thorough section on legal resources.  It explains channels through which to proceed should you be unable to secure a 504 plan for your child, or secure the reasonable accommodations you wish to have in there.  Also helpful is a directory of applicable state laws which relate to diabetes in school.

The Juvenile Diabetes Research Foundation puts out a 'School Advisory Toolkit'.  It comes as a hard copy from your local chapter, or is easily requested to download yourself.  It contains an overview of the 504 laws and practical information to help put one in place at your school for your child.  There are helpful samples of 504 accommodations as well as sample forms for different circumstances, such as one for a teacher to leave for substitutes.

Both ADA and JDRF have helpful back to school webcasts which can be viewed anytime through their websites.

Children With Diabetes has a page on Diabetes At School.  It contains links to a multitude of resources.  These include sample plans and forms, legal information, SAT testing rules and advice, and links to a variety of publications and websites which also deal with this issue.  Unique to Children With Diabetes is the opportunity to look at past polls, message board conversations and ask the expert results around this issue.  Reading how real-life situations have been resolved can be helpful in brainstorming solutions for your own.

A common theme throughout these resources bears repeating and emphasizing. Taking the time to make sure school staff understand a bit about Type 1 Diabetes will go a long way.  Educate staff about the effects and dangers of high and low blood sugars and the process of keeping them at bay. Explain, with examples if you possibly can, how diabetes has affected your child's school day in the past.  Use this information as the basis for making your requests regarding how your child's diabetes is handled at school.

Our 504 process ended with a mutually agreeable plan.  More importantly, it ended with our school's staff having a better understanding of Type 1 Diabetes.  Most importantly, it ended with an understanding that my daughter, the school's staff, our doctors, my husband and I are a team working together to keep my daughter's diabetes from getting in the way of a good education. 

Tuesday, October 2, 2012

No D Day...Ha!

George over at Ninjabetic organized yesterday's 'No D Day' event.   Diabetes bloggers were, for a day, to imagine that diabetes was not in the picture and to write about something else dear to their hearts.  The latter was accomplished.  The part about imagining there was no diabetes...no such luck.

It was a diabetes-heavy day.   The school guidance counselor was busy pulling out my daughter's 504 plan.  The e-mail came mid-morning, requesting a meeting this week to review its contents.  This was followed by a flurry of activity. The meeting was set up.  I dug out last year's version for review.  I spent time on the phone with another diabetes mom from the school, comparing notes.  I carefully considered both independently and with my daughter what needed to be changed in this year's plan.

As I was out photographing my zinnias, the phone rang.  A pseudo-low blood sugar had sidetracked my daughter on the way to lunch.  What was my opinion on treating it?  A burst of diabetes-math resulted in a solution.

Envisioning the busy week stretching ahead of us, it became clear that our annual JDRF walk letter needed to be worked on yesterday as well.  My daughter and I collaborated on it after school.  Some serious diabetes conversation ensued, followed by a site change. 

I love the concept of No D Day.  It reminds us that we are multi-faceted people, with wide ranging interests.  It reminds us of our hope for future days and years and lifetimes without diabetes.

Until then, it's always there, and it's rarely up to us when it will demand our full attention. Meanwhile, I'll settle for laughing at the irony of its intrusion on my No D Day, and go outside to weed my flower garden.


Monday, October 1, 2012

Amateur Gardening

 
 
In my spare time, I fancy myself a gardener.  In my imagination, I can create gardens to compete with Monet's at Giverny or those at Hampton Court Palace.  In reality, I'm thrilled when plants survive the combination of harsh conditions and lack of attention to which I subject them.  This season's successes are pictured below:

I had never heard of gazania before I bought a three pack at our local garden center the first year we were in this house.  I bought them solely because I liked how they looked, but they're fabulous in a multi-purpose way. They are one of the few plants which seem to thrive on the south facing desert-like conditions of this front garden.  This year, I filled the space with them, in a variety of cheerful colors.


These roses love it here, which is great since I do very little to nurture them except spray them to keep the deer from eating them.  Right in front of the huge bay window.  They very boldly and carefully eat the leaves and leave the stems and thorns.



The zinnias seeded themselves from last year and developed into this enormous clump of orange flowers encroaching on my front walkway.  I'm afraid that if I tried to move them, I'd kill them.  Fortunately that's not a purple mum they're sharing space with.



 
Next year we plan to add a vegetable garden out back, and I'm looking forward to growing some green beans, cucumbers and lots of fresh herbs. We'll then cultivate not only beauty for our eyes, but salad as well!  What better therapy than creating order out of chaos by weeding and designing a garden? 
 
Want to see more entries or join in the fun of no-d day?  Click here: