Thursday, August 2, 2018

Perfect Storm

August 2, 2018

My boys were diagnosed with Type One Diabetes at age 7.  As crappy as this disease is, it's fairly easy to take the reigns and "control" when the child is young.  My goal, as their mother, educator, and substitute pancreas, was to have them fairly self-sufficient by middle school so managing lunch and their school day was predictable and routine.  Mission accomplished.

I'd been warned all along that once a T1D kid reaches his/her teenage years, things can go haywire.  Hormones, attitudes, sleeping in, wanting to eat junk food, peer pressure, wanting to fit in...all are fabulous set-ups for rebellion and wanting the whole thing to go away.  Preparing myself for how to deal with it, I have talked to parents of teen (or former teen) T1D kids and read books.   I braced myself for the teenage years which arrived last October.

First, this is NOT my first rodeo with a teenage child or a teenage boy.  These guys have five siblings who preceded them into their teenage years.  I am prepared to deal with lovely attitude and my newly discovered stupidity and ridiculousness that accompanies all children into their teenage years.

Foolishly, however, I truly felt we'd be well into the teenage years before the Diabetes rebellion began.  Instead, I think Aiden was 13 years and one day old when it started.
Aiden on his 13th birthday

It started with him lying about checking his glucose level.  Even though he was wearing a CGM, he still had to check at least twice per day.  He would say he checked.  He would refuse to write down his numbers on the clipboard (what I use to monitor trends and adjust insulin doses).  One weekend, when he returned from Memaw's house, he literally had not checked his sugar for the entire weekend.  He relied on the CGM, however, the technology is only as good as the information you give it.   He just was really tired of this after almost 6 years, and he, as a typical teenager, had better things to do. 

I fussed.  Nagged.  Griped.  It didn't change unless one of us stood over him and made him do the right thing.  We spent a couple of months just trying to get back the compliance of the sweet little boy we once had. 

Then, a perfect storm of events changed the tides.

First, that weekend sent me over the mental edge, and Aiden and I had a heart-to-heart.  I excused everyone else, and we drove in the car to pick up the older brother.  During that ride, I told Aiden how incredibly disappointed and scared I was as a result of his behavior.  In summary, I said, "I have dedicated my life to learning as much as possible about this disease so that I can teach you.  I volunteer my time and donate money to help those who can change this for you and Asa!   I have lost sleep, lost money, given up promotions, and shed many tears because of Diabetes.  I would do anything in the world to take it from you, but I can't.  It sucks!  I know it sucks!  But, that doesn't give you the right to hurt and endanger MY SON!  If you keep this up, you'll can lose limbs, go blind, have kidney failure and die at a young age, and I DO NOT want to bury ANY of my children!"   This was all through tear soaked blubbering.  I've always protected their emotions, but this time, he needed to hear it to reach him.

Next, apparently, a long time ago, I told the boys if they got their Hgb A1C levels under 7, they could stay home for the rest of the school day.  In January, Asa's A1C was under 7.  I was shocked!  Boy, they QUICKLY held me to my word.  Ok, Asa gets to stay home for the rest of the day.  Well, by proxy, Aiden thought HE should also get to stay home. Even though Aiden's A1C was the best we'd seen in awhile for him, it wasn't under 7.  Well, that wasn't the deal.  He pleaded. Begged.  Argued.  I took a very sulky Aiden back to school while Asa got to come home and play!  Aiden did NOT like that!  He was mad at me the rest of the day. 

Finally, twice per semester, I lecture to UTA's Pediatrics class for undergraduate nursing students.  I speak on the science, the nursing care, but also the parent perspective.  It's a well-received robust lecture.  In February, I had to take the boys with me to conduct that lecture.  They had a morning dental appointment, and we went straight from there to UTA.  They sat in the back of the room and listened to my hour-long lecture.  They knew I lectured, but I don't think they fully grasped what it involved...My knowledge, but also my heart, out in the open for a lecture hall full of students to see.

Aiden commented on our way out about how much he learned listening to me.  Those three things in short succession, something clicked with him.  All of a sudden, he decided to take his Diabetes care much more seriously. 

Aiden cut out junk and seconds.  He's eating more salad, fruits and vegetables.  He's choosing grilled over fried.  He's diligently counting his carbs and limiting carbs.  He'll choose a drink from Sonic over an ice cream.  He keeps his PDM (device to control his insulin pump) and CGM (device that reads his glucose level) close to the hip.  He treats when things start to get high to keep his numbers in range.  He requests his grandparents cook for them instead of taking them out to eat because he knows how restaurant food impacts him; when he does go to a restaurant, he makes wise choices. Asa has always been easier to manage, for multiple reasons, but he, too, jumped on board and followed suit.

In return, Aiden lost about 20 pounds.  I had to regularly decrease his insulin rates to prevent dangerous lows.   Since his diet was healthier and he was exercising more, his body required much less insulin.  Besides normal teenage angst, his attitude improved tremendously (off-kilter sugars impacts mood big time!).  I complimented him immensely and shifted the focus onto how he feels since his sugars are more steady.  He admitted he felt much better.

In May, at a return visit to the Endocrinologist, Aiden had a record low Hgb A1C of 6.8.  He dropped almost a half point.  Asa's, too, was even lower than last time!  If you don't know, an A1C in the 6's is near-normal, near non-diabetic.  And, every reduction in the A1C level is a big reduction in the risk of complications.  He nailed it.  And, he got to have a day off of school!
Boys at doctor's office, hearing word of record low Hgb A1C levels in May

Some kids are harder to reach than others, and it always baffles me what is the final key to get through those thick skulls.  We worried he would revert to being lazy about Diabetes once he got his day off of school, but he has stuck it out all summer.  He is SERIOUS and gets mad at me if I "interfere" with his dosing.  So, I guess, now, I'm just the supervisor.

I'm really proud of these boys, and I hope the remainder of their teen years are spent managing their craptastic disease with such fortitude.  It will help them succeed into the amazing adults they are destined to become!

Help us support JDRF today as they search to find better treatments and a cure for Type One Diabetes!  Maybe one day, they won't have to worry at all!