I'm occasionally reminded of how thankful I am that when she was 13 months old, my child was diagnosed with diabetes.
She'd been fussy since Friday, wanting to be in our laps or close to us. She wasn't sleeping well. Saturday evening, she cried a lot. Saturday night, she threw up. By Sunday morning, she was lethargic, and seemed dehydrated. The pediatrician told us to go to the local emergency room.
What seemed like gallons of blood were taken from her screaming little body. It felt like hours before a vein was found for the IV. Neurological tests were done. Urine was taken. We were then taken in a room by the e.r. doctor and told that our daughter was 'extremely ill,' and that he did not have a diagnosis. He requested permission to perform a spinal tap to look for meningitis and possible other causes. We agreed. What choice did we have? A couple of hours after our arrival, lab results arrived showing a high blood sugar (in the 800 range if memory serves) in addition to other chemical imbalances. The hospital team continued to search for a diagnosis, unable to comprehend that a baby could have diabetes. Four hours after our arrival, we were in a helicopter on our way to the regional children's hospital. That is where insulin was first administered, mostly I believe to this day, because the medevac team insisted upon orders to do so before they transported her. Upon our arrival at the children's hospital, treatment for diabetic ketoacidosis was intense and thankfully successful.
Ten years later, I still hear stories like mine. A previously healthy child is brought to the pediatrician or the emergency room with symptoms which include lethargy, thirst, weight loss, stomach discomfort, headache, and exhaustion. A wide range of diagnoses are handed out, and too few of them are diabetes. Some of these kids are properly diagnosed in a day, a week, or longer. Some are not.
What if emergency room and doctor's office protocol for a child exhibiting 'flu-like symptoms' included a blood sugar check with a glucometer as part of the initial set of vital signs?
What if medical personnel were systematically educated on the signs and symptoms of type 1 diabetes onset in children? What if they knew it was entirely possible and increasingly likely for babies to develop diabetes?
What if posters or flyers or e-mail blasts about the signs and symptoms of type 1 diabetes were regularly provided to medical offices for staff and patient education?
Tom Karlya of Diabetes Dad is currently collecting stories about kids who were lucky enough to be diagnosed when things could have turned out even worse. These will be carried to Washington in hopes that some funding can be earmarked for an awareness campaign about Type 1 signs and symptoms. Nobody deserves to have diabetes, but every kid deserves to have diabetes if the alternative is death.
It's been quite an adventure raising a now-teenager who was diagnosed with diabetes just after her first birthday! Please realize that what you'll read here is not intended as medical advice; it's just the ramblings of a sleep-deprived mom. Always consult your medical team about your treatment options, but do stop by from time to time for a bit of perspective.
Survival
A recent school trip involved a variety of outdoor activities and team building exercises. As a parent chaperone on this overnight adventure, I had the opportunity to reflect on some of the programs while trying to keep my feet warm in the great outdoors.
One of the classes was called 'survival.' The activity was to build a make-shift shelter from branches, insulating it with snow and leaves, but first a conversation took place. What do we need to survive? How would we obtain the basic necessities if lost in the woods and needing to camp overnight? What should we keep with us when hiking; 'just in case?' The kids learned about water purification tablets and foraging for food. They learned about the rule of threes, which states that (loosely speaking) one can go without air for 3 minutes, without water for 3 days and without food for 3 weeks.
There I ironically stood, weighted down by the backpack I had been carrying since we'd arrived. It contained 2 juice boxes, 2 packs of cheese and crackers, 2 water bottles, 2 tubes of glucose tabs and whatever candy happened to remain in the meter case when we left home. It also contained the meter, 2 vials of test strips, a lancet, spare batteries, and glucagon. There was a large stash in our cabin from which to restock.
For this particular class within sight of the dining hall, this collection of things might have been excessive. For the 2 hour, 3 mile hike up the mountain, it could have been life saving.
For my daughter, no matter where she is, every hour is a survival challenge. Insulin, food, water, exercise and more must be carefully coordinated. Our goal is to balance these for her optimal health, long life, and sense of well being. Yet without constant focus, things can get out of kilter quickly, providing a real threat to her survival.
Without insulin, she will not survive.
Given too much insulin, she will not survive.
If she spends years with consistently high blood sugars, she will not survive as long as her peers.
Imagining an unlikely night lost in the woods is not a prerequisite to considering what my daughter needs in order to survive. We must consider those needs every day and every night of her life.
One of the classes was called 'survival.' The activity was to build a make-shift shelter from branches, insulating it with snow and leaves, but first a conversation took place. What do we need to survive? How would we obtain the basic necessities if lost in the woods and needing to camp overnight? What should we keep with us when hiking; 'just in case?' The kids learned about water purification tablets and foraging for food. They learned about the rule of threes, which states that (loosely speaking) one can go without air for 3 minutes, without water for 3 days and without food for 3 weeks.
There I ironically stood, weighted down by the backpack I had been carrying since we'd arrived. It contained 2 juice boxes, 2 packs of cheese and crackers, 2 water bottles, 2 tubes of glucose tabs and whatever candy happened to remain in the meter case when we left home. It also contained the meter, 2 vials of test strips, a lancet, spare batteries, and glucagon. There was a large stash in our cabin from which to restock.
For this particular class within sight of the dining hall, this collection of things might have been excessive. For the 2 hour, 3 mile hike up the mountain, it could have been life saving.
For my daughter, no matter where she is, every hour is a survival challenge. Insulin, food, water, exercise and more must be carefully coordinated. Our goal is to balance these for her optimal health, long life, and sense of well being. Yet without constant focus, things can get out of kilter quickly, providing a real threat to her survival.
Without insulin, she will not survive.
Given too much insulin, she will not survive.
If she spends years with consistently high blood sugars, she will not survive as long as her peers.
Imagining an unlikely night lost in the woods is not a prerequisite to considering what my daughter needs in order to survive. We must consider those needs every day and every night of her life.
Text Guessing
My daughter recently attended a 'dinner and a movie' birthday party. They first spent an hour at the birthday girl's house, with chips and chatting. The next stop was the theater, inclusive of popcorn. The evening concluded at a pizza parlor.
Below is a transcript of the evening's texts:
Her: 169 bolused all of it w/popcorn (Before the party, we had discussed a carb count for this theater's smallest popcorn.)
Me: Ok. Have fun.
Her: luv u!!!
Me (smiling): Luv u too. If u feel funny during movie check. If u can't see and need to go out, ask someone to come with you.(2 hours in a dark room where nobody was paying attention to her made me a bit nervous. Her alone in the lobby of the movie theater...ditto.)
Her: kk (Why does this now mean 'o.k.?')
Her: (2 very long hrs. later) 226 pizza coming soon
Me: Ok 35 per slice unless it seems thin, then 30. Add bg. Hope you're having fun. (It was a new-to-us pizza place, but pizza in the web picture appeared avg. not too doughy.)
Her: kk i will bolus soon
Her: how many carbs is a small garlic knot?
Me: (clueless) I'll guess 5 ;-) (disclaimer...this remains a completely random guess and is most likely quite inaccurate.)
Her: luv u (even nicer than 'thank you!')
Her: how many carbs is a piece of ice cream cake?
Me: I don't know how big??? Guess 35? (I knew she was coming straight home, allowing for post-cake damage control.) (Disclaimer: did not see ice cream cake coming as the birthday-girl is a professed brownie-lover and all logic led us to assume brownies would be served.)
Her: kk
By the time she got home, she was 218, tired, and happy. Her ability to participate in social events on her own makes me thankful for the technology we have for communication, internet research, and diabetes management. Looking ahead at those dreaded teen years, I hope she continues to realize that her responsible use of these tools allows her to go out and have a safe, fun night with her friends.
Below is a transcript of the evening's texts:
Her: 169 bolused all of it w/popcorn (Before the party, we had discussed a carb count for this theater's smallest popcorn.)
Me: Ok. Have fun.
Her: luv u!!!
Me (smiling): Luv u too. If u feel funny during movie check. If u can't see and need to go out, ask someone to come with you.(2 hours in a dark room where nobody was paying attention to her made me a bit nervous. Her alone in the lobby of the movie theater...ditto.)
Her: kk (Why does this now mean 'o.k.?')
Her: (2 very long hrs. later) 226 pizza coming soon
Me: Ok 35 per slice unless it seems thin, then 30. Add bg. Hope you're having fun. (It was a new-to-us pizza place, but pizza in the web picture appeared avg. not too doughy.)
Her: kk i will bolus soon
Her: how many carbs is a small garlic knot?
Me: (clueless) I'll guess 5 ;-) (disclaimer...this remains a completely random guess and is most likely quite inaccurate.)
Her: luv u (even nicer than 'thank you!')
Her: how many carbs is a piece of ice cream cake?
Me: I don't know how big??? Guess 35? (I knew she was coming straight home, allowing for post-cake damage control.) (Disclaimer: did not see ice cream cake coming as the birthday-girl is a professed brownie-lover and all logic led us to assume brownies would be served.)
Her: kk
By the time she got home, she was 218, tired, and happy. Her ability to participate in social events on her own makes me thankful for the technology we have for communication, internet research, and diabetes management. Looking ahead at those dreaded teen years, I hope she continues to realize that her responsible use of these tools allows her to go out and have a safe, fun night with her friends.
The Meter Case
This is may daughter's project for Diabetes Art Day. It's made entirely from test strips sourced from her meter case yesterday afternoon.
Animas Animal
What better, I thought, to make primarily with Animas supplies, than an animal?
This is my creation. Check back this week to see what my daughter makes. And click on the link below to view a fabulous collection of d-art from around the world.
Diabetes Art Day
Diabetes Art Day is THIS MONDAY, February 4th.
Artists in my life have taught me that there is great value in expressing oneself through the visual arts.
Though the finished product may not be museum quality, the experience of creating is the valuable part. You'll use parts of your brain you may not ordinarily access. You may be surprised where the process takes you.
So I encourage you to take a few minutes this weekend, or on Monday, to create art. It could be a complicated sculpture. Maybe you'll create a multi-media collage. Or it could be a simple drawing with pencil and paper when you find a few moments to sit quietly.
Take a photo of your art and follow the link above to share it with the Diabetes Online Community. There you can also see what was created by others who live with diabetes.
You'll be glad you did.
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