Back to Parents' Voices Marissa Gets a Pump
Brenda's Perspective

On October 2, 1998 Marissa began using a Disetronic insulin pump. She was anxious to begin, but had plans to attend a scavenger hunt with a friend so I agreed to go with her. I was a bit nervous about her playing dodge ball and concerned that her blood sugar would be too low, but I had taken some food and the kids were going to be eating ice cream sundaes and cupcakes. Her blood sugars were great! Getting up during the night those first few nights was quite tiring, but we knew that we had to test her blood sugars every hour to see if the basal rates were set appropriately. It took about 3 days to determine that we had to increase the basal rates for the period just before she had breakfast through lunch. In general, she was happy with the ease of the pump and would bolus without even looking at the buttons, which made me nervous. Marissa was not happy at all with the size and weight of the pump and often spoke of returning to injections. We tried to convince her to continue with it since, in the long run, she would have much better control over her diabetes.

One of the problems she has encountered twice has occurred after she has disconnected and showered, despite putting large bandages over the site; upon subsequent boluses she has felt a burning sensation. We are not sure why this is and are working out a way to have her shower shortly after using the EMLA cream, but before inserting a new tender. The cream has been the best thing we ever found, so far! And the help we have received from all our friends on the internet has been wonderful. When Marissa had a low reading a school one afternoon, several pump moms advised me on how to deal with the situation. Speaking of school, the nursing staff has been extremely supportive the nurse even gave my mom her home phone number should any problems arise during the short time Jeff and I were out of town recently. We have been in contact with a CDE via phone and fax and she has been very helpful with the minor adjustments we have had to make.

In general, I am pleased that Marissa is using her pump and hope that she will continue to use it. I understand her frustration with carrying it around, but I am hoping she will eventually feel comfortable enough with it to use it as long as necessary. I can't take away her diabetes and I can't cure it, but I can do my best to see that she will live a long, healthy life and the pump seems like one positive step towards this goal.

  Jeff's Perspective

Marissa had diabetes for nine years when she decided to try an insulin pump. She had just turned 11 and the prospect of sleeping late and eating differently convinced her. No one she knew wore a pump, so she was taking a big leap of faith to give it a try.

I decided to go with a Disetronic pump after many discussions with both pump makers, as well as health care professionals and other parents who have kids with diabetes. After taking care of the insurance issues (my policy covered the pump), the local Disetronic rep met Marissa and I at her pediatric endocrinologist's office on the appointed start date. Marissa and I decided she'd pump saline for a day or two and then switch to insulin, after she'd gotten a feel for working the pump.

We all went through basic pump operation, which was a refresher for Marissa and I, since we'd received the pump several days earlier and had gotten good at operating it. (Pumps are reasonably simple to operate.) After loading saline, it came time to insert the infusion set. That's when everything just about came to an end. We decided to use a Tender infusion set, which uses an introducer needle to insert a Teflon canula. The needle is removed, leaving only the canula. However, inserting the needle into my muscular daughter hurt, so bad that it brought her to tears. Had we had Emla cream, it would have been painless. Needless to say, we took home a prescription for Emla and have used it ever since.

Wearing the pump with saline proved to be a mistake. Marissa experienced all of the problems associated with a pump -- you're connected to a machine 24 hours a day -- without any of the benefits. Plus the saline burned, unlike insulin. She got fed up with the pump after about a day and a half and took it off. It looked like our attempt to try a pump was over.

About a week later, she agreed to give it another try, this time with insulin. We started at our house with the help of a diabetes nurse educator provided by Disetronic. Once "plugged in," Marissa was off playing as usual. We kept in contact with the nurse via fax and telephone, updating her basal and bolus rates over the next couple weeks. Being used to diabetes care and comfortable with telecommunications, this worked well for us.

Now, a month later, I believe that Marissa has benefited from using a pump. While she still has high and low blood sugars, they are not as frequent as with injections. We feel more comfortable letting her eat food with higher sugar content than before, and we've figured out how much insulin to bolus to cover just about everything she eats. Her blood sugars appear to be much more stable, without the swings we used to see with injections. She'll go to bed at 100, be near 100 in the middle of the night, and wake up at around 100.

Marissa still hasn't completely embraced the pump. She's quite petite, and the pump is very obvious regardless of what she's wearing. As she enters adolescence, that might be an issue. I hope that she'll find inspiration in Miss America and other young adults who have diabetes and wear insulin pumps, and will continue to use her pump until there is a cure.

November 1998

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Last Updated: Wednesday March 16, 2005 16:44:50
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