I’ve been allowing Elizabeth more responsibility when it comes to managing her diabetes.  Bad mistake!  One thing I have learned from this illness, diabetes is an extremely demanding disease that warrants intensive assistance on the part of a parent or caregiver, especially an adolescent.  The day in and day out management is 24/7, 365 days out of the year can prove overwhelming to a child let alone an adult.  Since Elizabeth is an athlete and the level of activity is extremely intense, it warrants micromanaging every aspect from exercise, tournament matches, food intake amounts, insulin dosing for corrections, modifying basals, and a great deal more.  My documentation looks like a road map!  After I compile everything from the last month, I’ll share it with you.  Well I guess it is a road map to optimal management of her diabetes.  This is new territory that she and I are forging and she is trying to gain a sense of independence but doesn’t understand the level of care is even more important now because of the hormonal fluxuations, and other factors that contribute to making her diabetes management even more challenging.

The doctor had stated some time ago, “Yvonne it will get a little easier once she turns 18.  I know this is a challenging time for both of you in trying to manage Elizabeth’s diabetes because she’s so active.  However, the activity has a positive impact on her diabetes management.  It will get easier.  You’re doing an excellent job.  You’re controlling the high blood sugars now will ward off medical complications from diabetes later in life and that’s the goal.”

Elizabeth competed in two International Tennis Federation Tournaments (ITF) this fall and our typical conversation began, “Hi Elizabeth how is your blood sugars?”

“Good Mom.”

“What are the numbers before and after your matches?”

“Really good like 115.”

“Wow that is good!  How is the cgm working out?”

“Good.”

“Okay that’s really great to hear.”

Now let’s fast forward to her quarterly pediatric endocrinology appointment.  Her visit was scheduled with Dr. Kaufman November 8th.  The routine was the same as before, have a seat until called by the nurse and blood is drawn to test her blood sugar HbA1c for the prior three months.   The nurse inquired about her monitor and she hadn’t received the replacement yet.  Therefore, Elizabeth assumed her glucose records could not be retrieved from her insulin pump.  She was grotesquely mistaken.  The nursed inquired. “Elizabeth where is your monitor?  I need to download your blood sugars.”

“Oh I don’t have it anymore, had to call about a replacement and it hasn’t arrived yet.”  She almost looked relieved!

“Oh, I see.  Well that’s okay, disconnect the pump and I can retrieve your records from your Ping insulin pump.”

Hesitantly she responded leaning forward, “You can?”

“Yes of course.  You can download from the monitor or the pump which is really convenient.”

I noticed the apprehension on her face at the time, but didn’t pay much attention.  Besides, she already told me her blood sugars were great.  I had no worries at all.

I asked the nurse, “May I have a printout of her blood sugars for my record?”  Elizabeth facial expression has now changed to horrified!  She became really quiet and motionless.  I still didn’t pay much attention until the nurse handed me the glucose records.  I was stunned at the records!  Red denotes high and her glucose readings were mainly high throughout the previous three months!

I exclaimed, “What the heck is this!  What is her HbA1c?  All I see is red denoting high blood sugars.”

The nursed said, “Give me a moment and I’ll let you know.  Her HbA1c is 7.9.”

“Oh my God.  You mean it’s that high?  It was only 6.7 three months ago.”

“Wow she really had a spike in it.  It’s much higher now three months ago.”

“No kidding.  Looking at these records it appeared she did a correction for the high and her blood sugars would go dangerously low in the early morning hours.  Upon encountering the low blood sugar he over compensated with too many carbohydrates, which in turn caused her glucose to become elevated again.  In essence she was chasing highs all day and night and bolusing for way too much insulin.”

“Yes you’re right.”

“Elizabeth what the heck is this?  Your blood sugars are horrible!  You told me they were perfect while at these tournaments but that was a blatant lie!  Look at this!”

“What Mommy?  I didn’t think they were that high.” she said hesitantly.

“You didn’t think they were that high?  Do I look like Winnie Foo Foo?”

“Who’s Winnie Foo Foo?”

“None of your business!  Look at this!  This is terrible!  Why didn’t you tell me the truth?  I knew your HbA1c was going to go through the roof  That’s why I wanted a printout  I just couldn’t understand how your blood sugars were a perfect 115!”

“Well, I didn’t want you to stress about my high blood sugars and I thought I could manage it.”

“If I haven’t stressed in 13 years, I don’t think I’m about to do so now.  I need to know what they are so I can help you!  How am I suppose to help you if you don’t tell me the truth?”

There was a moment of silence and she said, “I’m sorry Mommy but you do so much for us and I thought I could handle it.”

“I’m your mother I’m suppose to do for you and Mary you’re my children.  I know how much it takes to balance your diabetes.  I also know you can’t do it alone.  I’m a willing participant in this.  It’s not your fault you have diabetes, nor do I think you should take on the full responsibility of managing it.  This is a partnership.  Do you understand?”

“Yes .  I’m sorry.  It’s just a lot to have to deal with.  You have to keep on it every single minute.  The minute you don’t your blood sugars go high.  It’s hard.  I see everyone eating whenever they want and when I eat one thing my blood sugar skyrocket.  I see the numbers and I know I’m not feeling well, but I don’t want to be a burden to you so I lie about the numbers.  I’m sorry.  I won’t do it again.  I promise.”

“Have I ever told you or gave you the impression that you are a burden?”

“No, but I know you get tired of waking up throughout the night and trying to keep track of my diabetes and recording everything.  I just want to give you a break sometimes.  I want to give myself a break sometimes.”

“Elizabeth you are not a burden.  I’ll do whatever it takes to help you.  You give me a break by being honest so I can assist you in getting your blood sugars under control.  Now the highs are preventing you from doing well in your tournaments.  There was a time you could play through the highs, your body is changing and it will not tolerate blood sugars that are elevated for several hours anymore.  Nothing about this is easy.  It’s just part of life, doing what you must do to remain healthy.  The consequences are way too dire.  Rest assured, I have no problem doing what I do for you.  But in order for me to help you, you have to help yourself and you do that by truthfully telling me what your blood sugars are.”

“Okay I will.”

“Well, let’s go to the examination room.  Dr. Kaufman is going to hit the fan when she see these results.”

“Oh, oh.”

“Yeah, oh, oh.  You should have thought about the dire consequences of having to deal with her as well as me.”

We entered the examination room and shortly thereafter Dr. Kaufman appeared.  She looked at the records and stated, “Elizabeth your HbA1c has really increased; it’s 7.9.”

“Yes, I knew it was going to be higher.”

“What happened?  You last HbA1c was 6.7.  This is way out of control for you.”

“Well, I wasn’t being truthful to my mom about my blood sugars and then when I lost the records in my monitor, I figured she wouldn’t find out how bad my blood sugars are.  Well she did and she was really angry with me.”

“What did you expect?  Why did you assume she wouldn’t find out.  She’s always on top of this.  It’s just a matter of time before the truth comes out.”

“Yes, I see that now.  I figured because my monitor was broken she wouldn’t find out.  She does so much for me, I didn’t want to stress her out.”

Dr. Kaufman turns to me and says, “You know this is too much for her to deal with on her own.  She needs your help on this.”

“Dr. Kaufman, you know I will do anything  and everything in my power to help Elizabeth.  But it is her responsibility to be truthful about her blood sugars and not tell me they’re 115 when in fact they’re 315.  I’ll do what ever it takes to get her back under control.”

“I know you will.  Well, let’s schedule her next appointment for January.  That way you will have enough time to  chart everything and we can make adjustments in her pump settings.”

“Okay, that sounds like a plan.  That will not happen again will it Elizabeth?”

“No Mam, it won’t”

“Good.  Next time I won’t be so calm.  Do you understand?”

“Yes Mam.”

Dr. Kaufman smiles.  “Okay, I’ll see you guys in January and good luck in your upcoming tournaments.  You are one busy teenager!”

Parents the adolescent period is critical and challenging in continued diabetes management.  Each phase of Elizabeth life brings on other challenges.  This is not the time to relinquish control and the mammoth responsibility of diabetes management to your teenager.  Your assistance is even more important now than ever before.  They don’t call this the silent killer for nothing.  The unchecked highs over time will cause medical complication later in life which may lead to blindness, loss of limb(s), kidney failure, heart attack, and stroke.  The child with diabetes needs are totally different from a teenager who has no chronic illness.  Testing blood sugars are essential to maintaining optimal health.  In order to gain control and manage Elizabeth’s diabetes, it means constant recording of glucose levels, activities, food intake, and hormonal changes.  Everything influences her blood sugars whether it’s competition, practice, or a cold.  Therefore it becomes even more important to document everything to determine trends.  This also means awakening during the early morning hours to test glucose levels to circumvent highs and low blood sugars.  It’s a great deal of work but if you want your child to live a healthy life intense management is mandatory.  It’s all about investing in her future.  A future that hopefully will eliminated complications from diabetes later in life.

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We live in a day of diabetes medical technological advancements that are designed to improve the quality of life and longevity of those diagnosed with diabetes Type 1.  When this tragic story was shared with me.  My first question was, “How could something like this happen in this day and age?”  Elizabeth is only one year younger than Matthew.  She was diagnosed at two years ten months and Mathew was diagnosed at two years old.  Matthew like Elizabeth was an athlete.  He loved basketball and Elizabeth loves tennis.  Matthew like Elizabeth wore an insulin pump to administer insulin.  The only difference as far as medical devices– Matthew didn’t wear a cgm (continuous glucose monitor) and Elizabeth wears a cgm during tournaments.  The cgm prescribed by her pediatric endocrinologist greatly assists her to see the speed and direction of her glucose so she can make informed decisions and treat her diabetes proactively rather than reactionary.  Could this device assisted Matthew?  I say resoundingly yes!  Hypoglycemic (low glucose) can lead to unconsciousness, seizures, and even death.  This device can play a pivotal role in saving lives.  Matthew’s death is so tragic in numerous ways because the medical technology is available to save lives and to assist greatly in the management of diabetes.  It demonstrates horrifically how a lack of knowledge or accessibility can have grave and dire consequences. Most importantly death from complications from diabetes can be avoided with a medical device such as a cgm and superior diabetes management.

When Elizabeth read the article, there was a moment of silence.  Tears wailed in her eyes.  I asked, “Elizabeth what do you think about what you just read?”

“Mommy, I don’t want to die.”

I held her hand, “Elizabeth your level of care is impeccable.  I meticulously document everything when it comes to your diabetes.  The present insulin pump settings for your insulin dosing isn’t working because you’re growing and your body is changing.  What worked four months ago isn’t working now.  Modifications to your insulin pumps have been completed to resolve this situation expeditiously.  Now do you understand why I do everything that I do?”

“Yes.”

“Now do you understand why I ask you to test and test often?”

“Yes Mommy.”

“I know it isn’t easy having diabetes.  When you were diagnosed the entire family was effected by this, not just you.  When you played that match the other day.  Her coach Lori asked, `What’s wrong with her?’”  I sat silent because I knew your glucose was still too high, and I was aware you had more than enough insulin in your system to bring you down, but your blood sugars stayed elevated.  That’s why I’m working diligently to resolve this.  I know the longer your glucose remain elevated the more difficult it is to bring it down.  Time is definitely of essence.  I know it isn’t easy to wear two devices while you compete.  But do you think the cgm helps you?”

“Yes.”

“Don’t you realize I know how difficult it is for you to compete against girls who have no health issues?”

“Yes.”

“There you sit on the bench testing your blood sugar, looking at your cgm, and possibly bolusing insulin while they have the time to refocus on their game.  What I’m attempting to do to the best of my ability is to level the playing ground. I perceive diabetes as a mountain that is placed in the path to prevent you from reaching your goals.  I keep my shovel handy and I’m prepared to move that mountain one shovel full at a time.  I guarantee you in time the mountain will no longer exist.  I don’t care how long it takes.  Now think how fast we can both remove that mountain by shoveling side by side and working diligently for better diabetes management?  Together with God’s help we will prevail.  Together we are winning the war even if we lose an occasional battle.  Don’t you understand that?”

“Yes Mommy reading the article on Matthew makes me understand even more why you do all that you do.”

“Elizabeth how do you rate your level of care on a scale of one to ten with ten being the highest?”

“A ten.”

“Why?”

“Because you do everything to help me and encourage me.  I’ll be honest with you, you annoy the heck out of me when it comes to my diabetes.  You ask me over and over again, `Elizabeth what’s your blood sugar?  Elizabeth what’s your blood sugar?’”  She smiles and holds my hand affectionately, “I know I become angry, but keep annoying the crap out of me because it helps me to stay healthy and I appreciate it so much!  You show me every single day how much you love me.  You never complain about taking care of me even when you wake up night after night to test me. I’m so glad you don’t need a lot of sleep.”

Smiling, “Me too. Hey, I get tired, but failure is not an option.  The management of your diabetes isn’t easy but the consequences are far too great.  That’s why I do everything humanly possible to help you because I know as a child this can prove overwhelming especially now because of the growth spurts, adrenaline during your matches, and other factors too numerous to keep track of.  I have so much empathy for this family and for Matthew, I just think this could have been avoided.  You two started out down the same path but yet his life tragically ended prematurely and here you are with no complications 13 years later healthier than some people who have no chronic illnesses.  It’s so sad.  When I look at his picture, he looks so full of life, he had so much to live for.  He had his entire life ahead of him.  So many lives are cut dramatically short too soon before they can reach their full potential.”

“Mom, he was only one year older than me.”  She said sadly.

“Yes I know.  I want you to understand the importance of testing and testing often and wearing both devices during your tennis matches so that you can compete to the best of your ability and eliminate the high glucose levels and the lows. Do you understand?”

“Yes Mommy.”

“Managing your diabetes and testing often is your normal and that’s what you’re going to have to understand.  The importance of maintaining good control every single day will eliminate complications from diabetes later in life.  Diabetes will always knock on your door, but what we’re going to do is let that joker in, and jump his butt!  The two of us together are going to knock out diabetes!”

I rise from my chair and do boxing punches singing.  While Elizabeth laughs and says, “Oh Lord!”

“Float like a butterfly, sting like a bee.  Diabetes will not have a win over me!  We will work everyday to have the final say.  Float like a butterfly, sting like a bee.  Diabetes will not have control over me. I’m in this to the end and I know I can win! “  I raise my hands in triumph with fist drawn tight like Muhammad Ali!

Elizabeth is laughing and says, “How do you come up with this stuff?”

“I don’t know. I think I missed my calling.  I could have been an awesome comedian!”

Chuckling, “Yes Mommy you’re funny!”

“If humor can drive my point then so be it but do you understand?”

“Okay Mommy I do.  I love you and I appreciate all you do for me!”  She gives me a big hug.

“I know you do, wait I need to sit down I’m tired.”

Laughing, “I told you, you need to go running with me.”

“Yeah I know, after I get these blood sugars under control, we can go run together.  I really do need to exercise.  And by the way, I don’t annoy you, I’m trying to help you girl!”

She laughs, “I know but it’s still annoying, but it’s a good annoying!”

“Yeah, right!”

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