Photo: Portrait. Caption: Julie and Nikki DeFruscio.
From the Editor: Although insulin infusion therapy (the insulin pump) is known
to be effective, unobtrusive, and perhaps the closest thing to a healthy pancreas
available at this time, how early can it be started? The author knew the benefits
of pump therapy - but her diabetic daughter was a toddler.
This is the story of a three-year old and her pump, and just incidentally the story of a new company set up to supply clothes for very young pump users.
Our daughter Nikki Tyler DeFruscio was diagnosed on June 19, 2000 with Juvenile
(type 1, insulin-dependent) Diabetes. Like so many other families, this was
the day our lives and the lives of our family changed forever.
One day we were a happy well?adjusted family and the next we were struggling with the highs and lows of managing this illness. Our family's life was basically on hold while we tried to revolve everything around Nikki's diabetes. I mention this because I think it is important to recognize the siblings in a family of a diabetic child are very much affected. Nikki has two brothers who have had plans canceled, games missed, or needed to participate in events without one of their parents being able to attend. As their parent, I think this has hurt just as much as Nikki having diabetes.
We became a family that counts every carb, measures all Nikki's food and constantly tried to predict when the insulin would peak and how much food Nikki should be eating. We also were dealing with the very unpredictability of a 2 ½ year old Nikki Tyler. One minute she would want to eat and the next she would refuse to eat. We were on an emotional roller coaster with no end in sight.
I would become very frustrated when Nikki's HbA1c's would go up rather than down, and I would take her numbers as a personal reflection on my ability to control her diabetes. Grasping for support, I started to attend local support group meetings, trying to gather as much information about diabetes as I could, anything out there that could help us.
We discovered that many children in the 10 to 12 age group were using insulin
pumps. Their parents, I found, were reporting better BG numbers and greater
flexibility in their lives. So when I took Nikki to her next doctor's visit,
I inquired about the insulin pump. At that time the doctor we were seeing would
only put older children on the pump. Everything I read and everything I was
told led me and my husband to believe that we could gain better glucose control
with Nikki on an insulin pump. Why should we have to wait until she was 10 years
old? For us that would be seven years away. Seven years of this emotional roller
coaster. Seven years of blaming ourselves because we just could not bring the
numbers under control. After a lot of thought, investigating and consulting
with other parents, we decided to switch doctors.
When we first went to the new doctor, we mentioned the pump but didn't really pursue it. Then came Nikki's next three?month checkup, and her numbers had climbed yet again. This time our doctor asked us if we were still interested in going on the pump. When we said yes, she told us she would be willing to work with us to get Nikki on the pump.
The first thing I did was to have the pump rep come to our home and put me on a pump, with saline solution instead of insulin. I wanted to know what it would be like — and what kind of pain Nikki would be feeling during an infusion site change. This really helped us make the transition for Nikki. Nikki watched me wear the pump for two weeks. My wearing the pump made Nikki want one too! Of course she had no idea what it really would mean. For her just knowing mommy was wearing it was enough.
Finally it was her turn to try it. We had Nikki on the trial saline solution for close to three weeks. We then started with the insulin. I have to say Nikki adjusted to wearing an insulin pump in a matter of a week.
It took me much longer. It was like when she was diagnosed, all over again. At first we had good numbers, then we had high numbers, we had alarms go off on the pump, then we had infusion sites come out, and I almost want to say we came across just about every problem you could think of all within our first three months.
One of the most difficult problems for us was where to put the pump. At three years old we didn't want Nikki to have access to the pump, yet I wanted her to be able to look like a kid and be able to wear all her pretty dresses, the outfits she liked so much.
The pump rep had given us a very medical looking harness to hold the pump. This item looked terrible and was not acceptable to Nikki, or to me. I still remember the first day I put this harness on her. I cried all day. On top of dealing with all the pump mechanics we had to look at our beautiful daughter wearing this very medical looking item.
So I started having a friend take Nikki's favorite t?shirts and put pockets
on the back of them. This gave me easy access to the pump, and Nikki could wear
what ever she wanted and still wear the pump. When you now look at our daughter,
and if she is wearing one of our undershirts, you don't even know she is on
an insulin pump. This made my best friend and me think: “why should Nikki
and every other child wearing an insulin pump have to wear unattractive items?”
Why items that call attention to the fact that she has to wear this pump for
life support?
Why not make wearing insulin pump a positive experience for children and for their parents? Why not offer parents a place where they can show their children items that will hold their insulin pump — and look fun and cool?
That's the reason for us creating Pump Wear, Inc., www.pumpwearinc.com. It's a company where we want kids to be kids. These children and families already have so much going on in their lives they shouldn't have to deal with where to hold an insulin pump.
Today Nikki Tyler is enjoying better BG numbers, greater flexibility, and our family finally feels like it has some control on the situation. Yes, we still have our ups and downs, but the insulin pump has given us a way to control those ups and downs. It's allowed us a freedom we thought we had lost forever. If Nikki wants to sleep in the morning, we can now let her. If Nikki doesn't want to eat at 11:30, she doesn't have to. If Nikki wants to have cake at her brother's birthday party, she now can. The insulin pump is allowing us to gain better control for Nikki, now, so hopefully in 10 years we can avoid complications we all fear. We are so thankful to our wonderful doctor and our diabetes educator for giving our daughter and family the opportunity to bring back some normalcy into our lives.
It's important to note life on the insulin pump is not the answer to Juvenile Diabetes, and we still have plenty of ups and downs. A small child like Nikki has to be tested even more often on the pump, to ensure we don't hit lows and highs. Anyone thinking the insulin pump is the answer or cure for Juvenile Diabetes will sadly be mistaken.
However if you are a parent or caretaker willing to put in the
time and dedication needed to make the pump successful, I have no doubt you
will be pleasantly surprised at the results. The insulin pump has afforded us
better control, flexibility and allowed us to recover something very precious
to us: our life as a family.