Voice of the Diabetic

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NIKKI AND HER INSULIN PUMP

by Julie DeFruscio

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.

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