Hope

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Posted by Mark on 13:49:17 2008/04/24

In Reply to: Worst Burnout So Far. posted by Marie

Marie,
I feel your pain. My daughter is 13 now and was diagnosed when she was 5. I made my mind up the day she was diagnosed that diabetes was not going to become the enemy for our family and most of all for my daughter.

When we started there was no such thing as Lantus and there were no pens with insulin cartridges. It was NPH and fast acting insulin to deal with diabetes or you had to get a pump.

After a couple of years we gave the pump a try. Within a month of getting a pump I could see that for my softball, basketball, volley ball playing daughter, the pump was going to be a disaster. I let her choose if she wanted to continue with the pump or give Lantus and Insulin pens a try. She chose Lantus and Pen.

My wife and I have modeled for our daughter how to deal with her condition. We never refer to diabetes as a disease. We watch what she eats in that we count carbs with as much precision as we can. If she wants a milkshake she gets a milkshake. If she goes to a birthday party or a sleepover she eats what the others eat. The only difference is she knows she has to count carbs.

We chart her blood sugar checks and carb intake with a passion. Since she is just 13 we still take responsibility for keeping up with this information. She has checked her blood sugar no more than 6 times by sticking her fingers. She always checks by sticking her arms, thighs or calves of her legs. There is nothing better than a Freestyle glucose meter with an LED light on the tip for checking a sleeping kid during the night.

We do require our daughter to let us know what and when she is eating and what her current blood sugar is. If ever there were a piece of technology that was perfect for dealing with diabetes, it is the cell phone with unlimited text messaging. When it comes to checking blood sugar at 2:00 am when she is at a sleepover, the phone has an alarm to wake her and she can text us her blood sugar. If a correction is needed then we text back the correction. Texting does not have an attitude and because these kids love to text each other, it's just one more text message to add to the 20 they send each day.

For the past 2 years we have encouraged our daughter to help us determine each insulin dosage and carb correction for a low. When she is at school she will text or Instant Message her carbs. I or my wife will send back what we think the insulin should be and then based on her upcoming activity, she may suggest a higher or lower dose. Once we agree on a dosage she dials it up on her pen and injects the insulin into her arm. Because the entire process has been handled on either our cell phone as a text message or with Instant Messenger we have a record to go back and record the numbers at the end of the day with.

She checks no less than 6 times a day and most of the time 8 times a day. When a sport is involved she may wind up checking 3 times during a game. She's learning that when she is above 250 and going higher or below 100 and going down, her attitude is terrible. When her attitude is bad then everyone around her is unhappy.

My daughter has had a few meltdowns like you describe with your son. The first time this happened was when we were trying the insulin pump when she was 7. She dreaded every aspect of dealing with the pump. Other than the instance with the pump, at the time of the other meltdowns I found when I checked, that in each case she was fighting a low or high.

For 7 years now my daughter has been going to the Endo every 6 months. Her A1C had never reached 7. It's always between 6.4 and 6.8. This tells me it's not anything to do with what my daughter eats and it has everything to do with counting carbs. We have lows every week. We deal with highs every week. We are not dealing with infusion sets, little buttons on a pump, twisted lines, pumps falling out and hitting her in the head while hanging upside down on the monkey bars and all of the other issues that came with a pump.

On the other hand, if my daughter wants to eat 120 carbs while visiting the state fair, then she can be just like everyone else and do the same. She counts the carbs and dials up the insulin in her pen and that is that until she wants to eat again.

Last year my daughter was given a school assignment to write a paper about something that had happened to her which changed her life. She came home all frustrated because she could think of a single thing to write about. Her diabetes diagnosis, a two day stay in the hospital along with thousands of blood sugar checks and needles sticks over the years didn't even register negatively enough for her to think about her diabetes as a topic to write about.

When I started typing this post I stated that I felt your pain and you might think that based on my experience with my daughter that I have no idea what you are dealing with. My father has type 1 diabetes and he is 77 years old. He's had it since he was 14.

Even though I have never taken the first insulin shot, I have lived with this disease 24/7 my entire life. With my father we used to take him to the emergency room at least twice a year. Crashes where he fell and injured himself were common. Tension between us as a family because of what diabetes was to deal with back then was unbelievable. Diabetes was truly the enemy.

Before there were blood glucose meters, disposable syringes and now insulin pens, there were syringes you boiled and strips you peed on to get some rough guesstimate of what your blood sugar was. It used to be about every spoon full of food you put in your mouth and the calories in that food.

Compared to what my father has lived with to get to 77, it's just a small inconvenience to deal with diabetes today. When my daughter is in a horrible mood because her blood sugar is really high things like glucose meters and insulin pens don't help me deal with her attitude. Remembering how it used to be and thinking about the possibility of a cure does help some.

I know I will have to help my daughter through tough times as she continues to grow. I don't look forward to college and we pray for a cure every day. We also feel like the Freestyle glucose meter, Lantus long lasting insulin, insulin pens and cell phones with texting are like answered prayers.

MP

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