From Pewaukee, Wisconsin, USA:
My daughter was diagnosed with type 1 diabetes in early October, 2006. She is 10 years old and is very independent in her care. She has given herself all her shots since diagnosis. In fact, the nurse said that, in her 16 years, she has never seen a child give themselves their first shot. We go to the Diabetes Clinic at Children's Hospital in Wisconsin. We see the doctor every three months as recommended and have attended all the required classes (self-management), a total of six within the first three months of diagnosis. We have been doing research and educating ourselves on the options she has to manage her diabetes. As parents, we feel it is our job to investigate and advocate for the highest quality of care. We feel our daughter would benefit from an insulin pump.
The clinic requires our daughter to be diagnosed for one year before they will consider her a candidate for the pump. They require several "steps" you have to take before they will prescribe the pump, steps that we are more than willing to take, but would like to start now so that when her one year arrives, we are ready to go on the pump. They again require you to attend classes and group pump training courses (a total of three). We requested to sign up for the classes this summer in preparation for her one year date, but they refused to put us on a list until my daughter reaches her one year date. We found out the classes are full until the end of December as of two months ago, so our fear is if we wait until her one year date she will most likely be waiting closer to two years before actually getting a pump. We are torn between advocating for what we believe is best for our child and the inflexibility of the clinic we attend. Isn't my daughter entitled to an insulin pump based on the fact that she has a diagnosis of diabetes? Do most doctors or clinics follow this one year rule? As parents who are actively involved in the care of an independent, well adjusted, active child with diabetes, what would you recommend our next step be?
Many centers do have a one year before on pump rule. This is because it may be easier to transition to a pump after having adjusted to diabetes, gotten through any honeymoon period, and after children and caregivers have learned how to do carbohydrate counting and corrective doses. That said, your request to get some of the foundation laid prior to your one year anniversary seems reasonable.
From your letter, it sounds like your diabetes team may be trying to catch up with a backlog of kids and families wanting pumps. In those cases, priority is usually given to those who have been waiting longest and to the kids who are getting ready to transition out of the house to college.
While you're waiting for a pump, I'd work on teaching her the skills she'll need to be successful at pumping (calculating her own doses, troubleshooting through illnesses), etc. Pumping with diabetes is more challenging than shots, because of the constant vigilance necessary when dealing with only short-acting insulin on board. Personally, I usually encourage families of school age kids to wait until children want the pump and are able consistently and safely to assume much responsibility for pump care themselves. I find this usually happens for girls around the age of 12 to 13.
Original posting 22 Jul 2007
Posted to Insulin Pumps
Last Updated: Tuesday April 06, 2010 15:10:11
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