Caring for children with type 1 diabetes and celiac disease: A story from an RN who is also a mom

May 11 is National School Nurse Day, and SunButter appreciates school nurses, who help keep kids safe—including kids with allergies, diabetes, celiac disease and other conditions. One of newest acquaintances is Wendy, who chronicles her family’s journey at www.CandyHeartsBlog.com. Wendy is also a Registered Nurse, and here, she shares her story as a mom to a daughter with type 1 diabetes and celiac disease. Wendy also pays tribute to school nurses. As Wendy says, “We heart school nurses!” We heart you, Wendy, and appreciate you sharing your story here.A story from an RN who is also a mom

July 25, 2005 was a Monday.  

On that day, I took my then 24-month-old daughter to her pediatrician for an evaluation of some concerning symptoms I had been noticing over the previous weeks.  When I went to get her from her bed that morning, she was very weak.  Hardly able to stand, she cried and moaned…and I knew in my heart that something was drastically wrong.

A few hours later, the paramedics were called to her pediatrician’s office.  We were rushed into a packed Emergency Room, and I found myself pushed against a wall trying to see her through the crowd of doctors and nurses that surrounded her little body.  She was covered with wires, tubes, IVs, and needed arterial lab draws several times an hour.  Eventually a helicopter arrived, and I was forced to kiss her good-bye before making the treacherous drive in rush hour traffic, across a busy bridge, into the next state over.

Today that daughter of mine is a healthy, thriving, vibrant seven year old girl.  If you saw her from a distance, you might never know of the battle we waged for her life, or the constant balancing act that seems to consume her existence at times.  If you look a little closer, however, you would probably notice something that does set her apart:  The insulin pump she wears around her waist 24 hours a day, 365 days a year.  Today my daughter has been living with Type 1 Diabetes for almost six years.

I’ve been a Registered Nurse since 1995, and really didn’t understand the complexities of Type 1 Diabetes until I was forced to raise it.  The truth is that Type 1 Diabetes is very misunderstood.  It’s commonly lumped together into one big “Diabetes Pot” and people generally don’t understand what sets it apart from its counterpart, Type 2 Diabetes.  Simply put, Type 1 Diabetes is an autoimmune disorder in which my daughter’s pancreas stopped producing insulin.  Type 2 Diabetes is a metabolic disorder in which the body still produces some insulin, but the body cannot use it effectively.  Insulin is necessary for survival.  In the case of Type 1 Diabetes, insulin must be replaced via shots or an infusion.  Without insulin, my daughter will die.  Managing insulin from the outside is a tricky task of constantly balancing carbohydrates, exercise, stress, illness, and growth spurts (just to name a few variables).

As you might imagine, sending a child with Type 1 Diabetes to school is a challenge.  And, THAT brings me to the point of this entire post: I HEART OUR SCHOOL NURSES!

May 11, 2011 is National School Nurse Day.  My daughter’s school nursing staff takes impeccable care of her throughout the school day.  They are able to interpret the numbers, consider the variables, and work efficiently to minimize missed class time.  They know when it’s a P.E. day (exercise impacts blood sugar), double check the lunches I pack, and communicate with her teachers every day.  They have learned how to manage unexpected birthday celebrations on a whim, and rush to her side with fast acting sugars in hand when a low blood sugar is suspected.  They have also learned how to operate and interpret data from the technology devices we’ve chosen to manage her diabetes.  All the while, their goal is to help my daughter be a CHILD first and a child with diabetes second.

But there’s more…

That same daughter was diagnosed with Celiac Disease in 2008.  It is estimated that ten percent of the Type 1 population will also develop Celiac…and, you guessed it…LUCKY US!

So, in addition to everything it takes to manage her school day with diabetes, her nurses are also on constant guard for gluten.  They have taken care to educate themselves, read labels, and make sure that school staff understands the importance of clean surface areas, and good hand washing techniques. They keep track of the gluten free snacks I send to school, and take care to notify me when things are getting low.

That girl of mine is completing the First Grade this year.  I cannot help but to be excited about what her future holds.  I know she’s going to take this world by storm one day.  Six years ago, I was afraid to leave our house for fear that a blood sugar issue would creep in, and I wouldn’t know how to handle it while out of my comfort zone.  Four years ago, I was back in the game of life, but afraid to let her leave my sight. Two years ago, I dropped her off on her first day of Kindergarten, but refused to leave a 2 mile radius of the school.  Today, the love, care, and compassion shown by her school nurses have played a major role in my ability to let her soar into life with confidence.  (And, by the way, I’m going to get a pedicure before her school day ends!)

Whether you are a parent of a child with allergies, celiac, diabetes, or another health issue….please remember to hug your school nurse on May 11th!

LEARN THE SYMPTOMS OF TYPE 1 DIABETES:

*** Regardless of current health status or family medical history,

No child is immune to the risk of developing Type 1 Diabetes!***

 

Extreme Thirst, Frequent Urination, Vision Changes, Weight Loss, Fruity Odor on Breath, Sugar in Urine (Sticky), Increased Appetite, Drowsiness, Lethargy, Unconsciousness, Labored Breathing

Call your doctor if you suspect any of the symptoms listed above.

 

LEARN THE SYMPTOMS OF CELIAC DISEASE:

Abdominal Cramping/distention, Chronic Diarrhea and/or Constipation, Anemia, Weight Loss, Fatigue, Bone/Joint Pain

Call your doctor if you suspect any of the symptoms listed above.

Wendy and her husband, Jason, have been married for 10 years.  They have three daughters, ages 7, 5 and 4.  The family resides in the Sonoran Desert with their rescue dog, Ivy.  You can follow their journey at www.CandyHeartsBlog.com.

Do you have other tips for parents of children with health conditions? What’s your story? What works for you? We’d love to hear about it. Comment here or on our Facebook page

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Food can be fun for children with food allergies

Food is fuel. Food is also fun! One of our weekly highlights is seeing photos of what Keeley McGuire packs in fun bento lunches for her lucky daughter, who also happens to have a peanut allergy. We’re proud Keeley shares her story here, and we love watching her daughter thrive. Thanks, Keeley! Look at this lunch: My name is Keeley and I have a little site called Keeley McGuire Blog. When I started blogging last year, I didn’t really know what direction I was headed – I just knew I needed a creative outlet. I started sharing some crafts, recipes, my love affair with my crockpot, and what I called “silly sandwiches” for my daughter, aka Little Miss. If you’re a mom looking to spice up your kiddos’ lunches, start simple. Use a cookie cutter on the sandwich! It takes the same amount of effort to cut a sandwich into a fun shape with a cookie cutter as it does to cut it in half. Then, get as clever as you’d like.

Guest Blogger: Back to School with SunButter

We’re grateful when parents of kids with allergies tell us how SunButter® helps them. Jenny is the mother of two girls, a freelance writer and the author of “The Nut-Free Mom” blog, where she writes about parenting with nut allergies. SunButter® makes school lunch fun again It’s back-to-school time and like every other mother of an elementary school child, I’m asking myself what to pack for lunch. And since I’m the mother of a child with severe peanut and tree nut allergies, I’ve had to be creative at lunchtime. This isn’t always easy with a busy schedule. While I’ve done my best to offer non-peanut butter lunch alternatives (all kinds of deli products for sandwiches, pasta salad, veggies and yogurt dip, etc.), sometimes I’ve found myself wishing I could turn to peanut butter. Of course, that’s not an option for us.

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  • http://www.candyheartsblog.com/ Wendy

    Thank you for helping me honor the School Nurses I have come to love! Our family LOVES SunButter and we’re looking forward to a healthy future with a jar of SunButter as a staple in our fridge :)

  • http://www.mydiabetic-child.com Lora

    What an awesome post Wendy!! We love.love.LOVE our school nurse. She is the only reason I am sane during the school day.

  • http://betabuddies.blogspot.com Reyna

    Wendy is rock in the Diabetes Online Community. She is also a wonderful resource for Celiac Families. Her compassion never ceases to amaze me. Here she is, once again, thinking of others. Happy School Nurse Day Nurses!!!