Diabetes buddies: Voices of experience and hope

Mary's diabetes story:

     I've been involved with the Outreach Program for JDRF (formerly known as the Juvenile Diabetes Research Foundation) for about 10 years.   A family lives near me in a MetroWest suburb of Mass. and I visited them with one of our Bags of Hope, a care package designed to encourage children and their adult caregivers, help ease the transition of a new diagnosis of type 1 diabetes, and introduce the family to JDRF.  You go to the home and bring the bag with you and meet the child who was just diagnosed, and their parents.  The bag has a lot of information about diabetes, Rufus the Bear with Diabetes, a blood glucose meter…

     This family had a son, Joe, who was six.  My son Nick was diagnosed with diabetes at age 8.  Nick, who was 12 then, was just there with me.  There wasn't a lot of connection right then, but the young boy later wrote Nick a thank you note.  It meant a lot for Nick to get that.  Nick had just gone onto an insulin pump at age 11 or 12, and Joe was interested in learning about the pump.  So Nick went to visit again and showed Joe his pump; that interaction fostered more of a connection between them.

     When Joe got older, he went to Camp Joslin (now part of the Barton Center for Diabetes Education), where Nick was a counselor.  Nick had been on his high school football team, which Joe, who was in middle school by then, was very interested in.  They had this history in common, so they talked, and Nick told him about hiding his glucose tablets in those tight football pants.  

     When Nick was in college, he met another boy in our town, Mike, who'd recently been diagnosed with diabetes, who was about the same age as Joe.  The mothers arranged for Joe and Mike to go out for lunch with Nick, to ask about drinking and drugs and whatever.  That happened several times.  So the buddying about diabetes rippled out from that.  

     I ran into Joe two weeks ago.  He's now a senior in high school.   Joe is interested in delivering Bags of Hope to newly diagnosed children and in becoming a diabetes mentor for JDRF and being that voice of experience.  It's all circled around.

     The boys' mothers saw Nick's mentoring as a source of support, encouragement, and chance to see an older boy who was doing well living with Type 1 Diabetes.  They both also mentioned that for them as mothers it was comforting and helpful to see an older boy negotiating through the teen years and college well.

     That circled around another way, too.  Joe's mother is a captain of a large Walk Team in Boston [for the annual Walk to Cure Diabetes, JDRF's biggest fund-raising event].  That all started from that first Bag of Hope delivery.  As people get more comfortable with the disease and how to manage it, they get more involved with JDRF and its fund-raising side.  Building engagement like that is a process that takes some time.  For some families, it’s immediate; for others it takes a year or two; with others, it doesn't happen at all.  

     Read another story about how buddies help others with diabetes, and see the JDRF's New England Chapter - Bay State Branch website.  Thanks to Lauren Shields of JDRF for arranging the interview with Mary.

What's risky for teens is parents: Insulin pumps for controlling diabetes

Many newspapers described the FDA study by Dr. Judith Cope and others in this month's issue of the medical journal Pediatrics on the risks to teenagers of insulin pumps for their diabetes. Here’s the reaction of Reagan Schweers' mom, from her blog:

"Insulin Pumps Risky for Teens" was the title of an article I read in the Dallas News this morning. Right next to the article was a picture of my son's insulin pump.

I read the article with a fairly open mind. I know that the idea of a headline is to grab attention. Ok, so I was grabbed. The article wasn't especially informative so I got online to check out the "study" that was mentioned. The study was from a well-known medical journal, Pediatrics. Since I worked in pharmaceutical sales and have read MANY medical articles, I'm not afraid to wade through the data to figure out what the study really said.

 So here's my take on things.

What the FDA found over the course of 10 years of data was that teens do risky things and aren't the best at caring for their $6000 medical device. Many of the incidents that had occurred were due to teens doing stupid things - dropping their pump, ignoring error messages, ignoring alarms, not checking their infusion lines. Of course, my question in all this is, since when is it the sole responsibility of the TEEN to do what the PARENT should be doing? Folks, diabetes is a serious long-term disease. Why would you not review your teen's blood sugar numbers? Why would you not make sure they are using their pump properly? This is a matter of life and death and you are FOOLISH as a parent to ASSUME that your teen is doing everything perfectly.

 I must admit that my son takes care of his pump and his diabetes 100% himself. He is FASTIDIOUS about keeping his blood sugar in control. But my husband and I always check behind him. His endocrinologist checks behind him. The diabetes educator in the endocrinology office checks behind him. And his HbA1C doesn't lie. If it's off, then we know he's not controlling his blood sugar or something is amiss with the pump.



In order to get a pump in the first place, the endocrinology office made Reagan test drive a pump for 4 days to see if he'd like it or not. You also have to go through their training program to even be considered for a pump. Then the pump manufacturer representative came to our house to train us extensively for using the pump. Reagan and I both reviewed the materials that came with his pump.



What we have had with his pump is MUCH better diabetic control of his blood sugar. This means (and is scientifically proven) that he will have less chance of losing his eyesight, losing a kidney or even a foot later in life. He has more freedom to live a "normal life" than he did giving himself multiple injections per day. We are able to closely titrate his insulin dose round the clock with the pump - much closer than we could with multiple injections of insulin.

AND...we just got the new continuous glucose monitoring system and he will be trained on that on Wednesday. He will be able to tell 24/7 - anywhere - anytime - what his blood sugar is. I can't tell you how important that is given the fact that he is will soon be driving solo. Or how important it will be when he's participating in a marching band competition and can't carry his blood sugar test kit with him everywhere. And, NO, insurance wouldn't even pay for it...(but that's a blog for another day).



I guess what makes me most frustrated is that this now gives insurance companies more ammo to say "no" to a device that has given many teens and their parents enormous freedom and peace of mind. In fact, the majority of teens who use an insulin pump will live longer and healthier lives - check that 10-year study. Honestly, what's risky for teens is parents who aren't involved in their lives. It's a partnership with your teen and the endocrinology staff. The pump is the best thing that's happened to Reagan as a diabetic.

Advice: Managing your child's diabetes calls for a partnership of you, your child, and the endocrinology staff.

Read another story about partnership in diabetes care.

Thanks to Reagan Schweers' mom for the source story in her blog, "A little of this and that."