Wendy Rose On Managing Her Daughter's Type 1 Diabetes

Name: Wendy Rose

I’ve been married for 11 years and have three daughters, ages 8, 6, and 4.  I’ve been a registered nurse since 1995, and currently work from home as a pediatric telephone triage nurse. My daughter was diagnosed with type 1 diabetes on July 25th, 2005, at the age 24 months.  It was three weeks after her second birthday, about 6.5 years ago.

Can you tell us your diagnosis story?  How was your daughter diagnosed?

For several weeks prior to her diagnosis, I had been noticing that my daughter was saturating through her diapers several times a day.  At first I thought it was the diapers we had been using, so I gradually tried every other brand I could get my hands on, but nothing seemed to resolve the problem.   Exactly one month prior to her diagnosis, I remember asking my friend if her same-aged daughter was experiencing anything similar.  She wasn’t.  That was the first time I entertained the idea that my daughter could have diabetes.

I mentioned my concerns during her two year wellness visit the following week, but was told that I shouldn’t worry because our family didn’t have a history of diabetes.  I found reassurance in the fact that her pediatrician wasn’t concerned, and did my best to avoid overreacting.

Three weeks later, she woke up very weak, and I knew in my heart that something was drastically wrong.  I called the office for an appointment.   Shortly after our arrival, an ambulance was summoned followed by transport to a PICU via helicopter.  She was in diabetic ketoacidocis, and probably wouldn’t have survived another night had we not gotten help when we did.

What life changes were made to get to the point you are at now?

As a family, everyone is aware of the signs of a blood sugar problem.  Her younger sisters (ages 4 and 6) understand the urgency a low blood sugar presents, and often try to help by getting a juice box or gathering her testing supplies.  Her sisters have never lived a day when diabetes hasn’t been present in their lives, and they understand quite a bit.

In my marriage, we have learned the true meaning of teamwork.  It’s not always easy, but my husband and I depend on each other to make sure the needs of our family – and diabetes – are being met.  Most nights this means that one of us checks Adalyne’s blood sugar around midnight, 3 am, and whenever else it may be necessary, depending on each result.  We’ve only had a handful of date nights since her diagnosis 6 years ago, because it’s hard to find a babysitter who can manage diabetes for an entire evening.  More than anything, however, we’ve found great strength through our faith.

What are some of the biggest challenges you have faced living with and caring for diabetes?

When a child gets flushed or feels warm, a mother might check her temperature.  I check a blood sugar.  When a child has a temper tantrum, a mother might send her child to her room.  I must rule out a blood sugar problem first.  When a child is thirsty, a mother would offer something to drink.  I must consider that her blood sugar could be too high.

I cannot send her to school, church, or a friend’s house without considering how her blood sugar will be managed while she is not in my care.  The school nurse and I are in contact every day, sometimes several times a day.  I keep my cell phone quickly accessible at all times, and don’t often stray more than a 20 minute radius from wherever she is.

As her mother, I want to see her participate in all that life has to offer.  I’m constantly walking a fine line between managing her diabetes myself, and allowing her to gain more independence.  She must live with this for the rest of her life (unless there is a cure), and I don’t want her to suffer burnout, especially at such a young age.

I also find that I’m constantly battling stereotypes because many people don’t understand that type 1 diabetes is an autoimmune disease that could not have been prevented.  She cannot manage her blood sugars using diet and exercise alone, nor can she take an oral medication instead of her insulin infusion.  She CAN eat sweets and desserts, but we must make sure her body gets the insulin it needs to convert those carbohydrates into energy.

What kinds of complications come with the combination of celiac disease and diabetes?

As far as long term complications go, each diagnosis carries it’s own risks.  To name a few, diabetes threatens blindness, kidney failure, stroke, and heart disease while Celiac increases the chances of osteoporosis, infertility, and GI cancer.  Between the two, each and every organ and/or system in her body is at risk of a complication.  Combined, there is always the concern ofceliac causing poor food absorption, which can lead to hypoglycemia from her insulin infusion.

Have you had any particularly scary moments or times that you could share with us?

When she was very young, there was a period of about 12–18 months that her blood sugar would drop very low, causing her to pass out and hit her head.  These episodes were completely unpredictable, and seemed to happen about once a week.  As you might imagine, it was quite frightening to witness, and very worrisome wondering when the next episode would strike.

Fortunately, her Animas Ping insulin pump allows us to administer insulin doses much smaller than we could via syringe.  These episodes stopped once she began pumping insulin.

There was also one episode in 2010 when we had to administer a small dose of glucagon, because her blood sugar was very low and she was not responding well to oral glucose.

How does diabetes affect your daily life?  Do any of your other family members also have diabetes?

There is no known family history of any type of diabetes on either side of our family. Managing a child with type 1 diabetes is a constant balancing act between insulin needs, carbohydrate intake, physical activity, growth, hormones, stress, and illness.  Blood sugar levels can be unpredictable and change suddenly.  For this reason, Adalyne must test her blood sugar eight to ten times a day.  Sometimes it feels like we live life in 2 or 3 hour increments, and each test result reveals what happens next.

What are some essentials in your diabetes management and care?

1)  A positive attitude.  There are no “good” or “bad” numbers over here.  Each number is just another piece of data to help us decide what needs to be done next in order to keep our daughter as healthy and happy as possible.

2)  Her Animas Ping insulin pump.  I can’t imagine life without it!

3)  The Insulin On Board (IOB) feature of her insulin pump.  This feature keeps track of all active insulin circulating from both correction and food boluses.  I credit IOB as being one of the primary reasons we were able to stop those horrible low blood sugar episodes I mentioned earlier.

What are your top three health and fitness tips for other people caring for children with type 1 diabetes?

1)  Sleep.  Yes, I realize it seems impossible at times, but try to do it anyway.  Make every attempt to get in bed at a reasonable hour, and avoid becoming distracted if you are getting up to monitor your child’s blood sugars through the night.  Sleep as much as you can, whenever you can.

2)  Fit in exercise.  Make the time to go to the gym, take the dog for a walk, or attend a group fitness class.  Exercise is good for the body and rejuvenates the soul.  Your child is watching you, and learning to manage exercise with diabetes is a life skill your child will need.  Set the example.

3)  Eat well first.  Strive for six servings of fruits and/or veggies a day.   Once you’ve filled your body with the nutritious foods it needs, THEN allow yourself something indulgent.  I’m the last person who would ever suggest that you cut out sweets and desserts all together, because I have a WICKED sweet tooth.  Even still, managing diabetes is a never ending job.  You’ve got to give your body the fuel it needs to maintain the strength and endurance to go the distance.

As a diabetes blogger and advocate, what is your message to all the people out there living with diabetes?

To all people who are living with diabetes – whether you are a caregiver or a person with diabetes – I’d just like to say that YOU are NOT whatever number shows up on the meter.  You are so much more, and those numbers cannot define you.

I started CandyHeartsBlog.com in 2008 when I was looking to connect with other mothers who are raising children with type 1 diabetes.

I strongly believe that mothers must take care of and look out for each other.  I believe that we’re all doing the best we can to raise healthy families and productive children.  If there is a mother anywhere out there who feels alone in the face of a type 1 diabetes diagnosis, I want to find her and help empower her to face the challenges ahead with confidence.

Wendy's D-Blog: http://www.candyheartsblog.com/

Email: candyheartsblog@gmail.com

Facebook: http://www.facebook.com/WendyRoseRN

http://www.facebook.com/pages/Candy-Hearts/109492502440055

Twitter: @MrsCandyHearts

Tags: blood sugar,juvenile diabetes,insulin pump,type 1 diabetes,celiac disease,gluten intolerance,Animas Ping,Insulin on Board

Category: Interviews