Archive for year: 2015

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TMI

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I have always loved data. When I was in 2nd grade, my mom forced me to get a really short haircut because she was tired of trying to get the knots out of my longer hair. She tried to convince me that it was flattering. I decided to prove her wrong by administering a survey to my classmates. I was right. Pretty much everyone hated my haircut. Data do not always tell you what you want to hear, but they do always provide information.

When Dexcom released their Share feature earlier this year, I was ecstatic that I would be able to see Liam’s blood sugar 24/7. I thought it would be reassuring. Yay, CGM data in real time! I did not anticipate how stressful it would be. The first day after we activated Share, my phone registered LOW at just the time I knew he would be boarding the school bus to come home. On more than one occasion, I have sent the school nurse running down the hall with glucagon in hand, and she has found a perfectly safe lad chomping on glucose tabs.

The interesting thing about the Dexcom Share is that it makes Liam both more and less independent. We feel comfortable giving him more latitude in outings with his friends, and we no longer make him check in with the school nurse before lunch and gym class. However, both of his parents are now stalking him every moment of every day. We know every blip on his CGM in real time.

Share creates a similar paradox for us as parents (i.e., stalkers). We are both more confident that he is safe and more anxious about his safety. Knowing Liam’s blood sugar values in real time helps us to ensure his safety. However, what is going on with his blood sugar is sometimes ugly and anxiety provoking.

After the most recent episode of asking the school nurse to check on a boy who had everything completely under control (but wasn’t responding to my texts), we have agreed on a new system of communicating during Dexcom low alerts. Liam has agreed to text me to let me know that he’s taking care of it. If I don’t hear from him, I have reserved the right to sic the school nurse on him.

Written by Susan Ramsey

 

Our worst diabetes day. Ever.

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Our son Liam was diagnosed with type 1 diabetes (t1d) almost 5 years ago. Through a combination of good luck and amazing technology, we have been incredibly fortunate and have avoided the things that we fear most. Most days, t1d is an annoying hassle, but there are days when it takes over our lives and scares the pants off of us.

This past weekend, we were in Boston for a music festival. We took a break from the music festival to climb at a local gym and go out to lunch. When we got back to the hotel, Liam started complaining about stomach pain. His blood sugar was starting to go up after a high carb, high fat lunch. He corrected but continued to complain about his stomach. A few minutes later, he was acting really goofy (not uncommon for our 12-year-old boy). He started to climb onto one of the hotel beds and fell on the floor. We thought he was just being silly until, on cue, all of our devices that receive Dexcom data alerted LOW! Steve picked him up off the floor. He was conscious but covered in sweat. I gave him a bottle of liquid glucose and a tube of glucose gel while Steve mixed the glucagon solution so we would have it ready if necessary. He tested at 30. He then devoured another 40 g of carbohydrate, and his blood sugar started to rise. Several hours later, his blood sugar soared into the 400s. He felt terrible and looked like he had been hit by a bus.

In hindsight, the low probably happened through a combination of an overly zealous correction for the rising post-lunch blood sugar and post-exercise effects (in addition to whatever growth spurt/hormonal factors are currently at play). The incredibly scary thing is how quickly it hit. What if he had been on the school bus at the time? The vulnerability that accompanies t1d is the thing I hate the most.

Lessons learned:

  1. Liam’s lows are not always going to have the grumpy, sluggish, spacey presentation.
  2. Adolescent blood sugars appear to be as labile as adolescent emotions.
  3. After 5 years, we have learned so much yet know so little about how to be a pancreas.

Written by Susan Ramsey

Rock Type 1 Adventure Challenge 2015

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We’re hosting our 2nd Annual Rock Type 1 Adventure Challenge for kids and teens with type 1 diabetes and their siblings on September 19th (with a rain date of September 20th), 2-6 pm, Lincoln Woods State Park, Lincoln, RI. Come climb on real rock with us (we’ve scouted out a bigger and better rock face)! We are planning lots of other fun activities, including hiking through the woods, bouldering for older kids, slacklining, and climbing on Rock Spot Climbing’s portable rock wall. This event is completely free of charge, and absolutely no climbing experience is necessary.

Camp & Comfort Zones

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When our son Liam was diagnosed at the age of 7, the Certified Diabetes Educator who was training us in all things type 1 mentioned a sleep away camp for kids with t1d. I could not imagine that Liam would be ready for a week-long sleep away camp the following summer. I generated about 10 reasons why it wouldn’t work for Liam to go to camp. I contacted the camp director who very patiently addressed each one of my concerns. I relented and registered him for camp. I was a wreck when I dropped him off that first year. Leaving him in someone else’s care for the week was miles outside of my comfort zone, and it was one of the best parenting decisions we have ever made.

For one week out of the year, Liam is with kids who face the same challenges he does. Everyone has to do a blood glucose check before eating. Everyone has to count their carbs and bolus. Everyone has to be on the lookout for highs and lows. There is a level of understanding among his fellow campers that we just can’t provide no matter how hard we try.

I think about that decision to send him to camp every time we’re faced with a new t1d situation that falls outside of my comfort zone. It’s a reminder of how important it is for me to be brave and allow him the space he needs, particularly as he approaches adolescence.

Steve and I now skip across the parking lot when we drop Liam off for camp. We know he is going to have a blast and will stand a little taller (literally and figuratively) at the end of week. As a bonus, Steve and I get time to ourselves and 5 nights of uninterrupted sleep. No alarm clocks set for the middle of the night. No Dexcom alerts. Sleep.

Thank you, Camp Surefire!

Written by Susan Ramsey

Too Many Variables…Swimming in Mustard

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I have my cocky days. My days when I believe that if I can just be smart and prepared enough in managing Liam’s T1D everything will be fine. My “T1D is a manageable hassle” days. Then, I get blindsided by blood sugars that don’t make sense and keep not making sense for days. We had a string of those days on a recent trip to the Midwest. Liam’s blood sugar kept spiking, and it made no sense whatsoever. We ran through the usual culprits.

  1. Is it a bad pump site? We changed his site 5 times over 5 days.
  2. Did the insulin get too cold when we went for a walk in the frigid temperatures? We tried a vial of insulin that had not been exposed to the cold.
  3. Is he sick? He had no symptoms except the general crappy feeling of having high blood sugars. He was also negative for ketones.
  4. Is it the weird food he’s eating? (How many grams of carbohydrate are in a cheese curd?) He had a huge spike after a Greek yogurt, which is the same brand and flavor he eats at home without incident.
  5. Is he growing/having a hormone surge/whatever else happens to an 11-year-old boy? We just had to throw our hands in the air in response to this question.

When Liam was diagnosed, a very wise diabetes educator warned me that sometimes the numbers just wouldn’t make sense. I do research for a living. I thought that I could approach it methodically and force it to make sense.  Our recent trip was a reminder of how humbling this condition can be. For now, I’m very happy to be back to confidence restoring blood sugars and nights that aren’t interrupted by the constant buzzing of the continuous glucose monitor.

 

Written by Susan Ramsey

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