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AACE Presentation
March 7, 2003

Good afternoon. I'm honored to be here to offer you my thoughts on being the parent of a child with type 1 diabetes. I hope that my experiences, however small and personal, will help you understand better the unique challenges that come with parenting a child with a chronic illness.

First of all, it's important that you know that I'm not a doctor, and that I don't play one on TV or on the Internet. I'm just a dad, though I have always had more than a passing interest in medicine. I worked in a pharmacy while in high school and college, spending more time talking "modes of action" and pharmacokinetics with the pharmacists than tending to customers. I also worked in a pharmacology lab at the Medical College of Wisconsin during my college summers. Hundreds of mice gave the supreme sacrifice that summer, though I doubt that medical science grew in any appreciable way.

I found myself drawn more to mathematics and computer science than medicine, so I completed a bachelor's in math and headed out into the high tech world. I moved to the Washington, D.C. area in 1982 and served in the US Government until 1988. While traveling the world, I met my wife Brenda in Africa. She too worked for the US Government. We married in 1984 and Marissa, our first child, was born in August 1987.

Marissa, who is now 15, was diagnosed with type 1 diabetes in September 1989 when she was 24 months old. I remember just a few things from back then, mostly feeling very guilty about how I reacted to her repeated requests for water during the night in the days before we knew that she had diabetes. I also remember her pediatric endocrinologist, Allen Glasgow, saying, "We can make a huge difference in her life," which I took to be a positive statement. My wife and I agreed that diabetes would never interfere with Marissa doing whatever she wanted.

From Dr. Glasgow, nurse Joe Ward, and others at Children's Hospital here in Washington, D.C., we learned how to do blood tests and inject insulin. We also quickly learned how to adjust Marissa's insulin doses. All of that - the technical management of diabetes -- was the easy part. The hard part was learning how to share our home and our daughter's life with a most unwelcome visitor - type 1 diabetes.

Back then, in 1989, there was very little support offered to parents. There were occasional support group meetings at hospitals or churches, but with my wife and I both working, we could never manage to attend. We struggled with so many things, including Marissa learning quickly that food was a powerful weapon; Marissa running around the house to catch her to giver her an injection; Marissa experiencing two very frightening lows (17 mg/dl). And we did this essentially all alone.

As Marissa grew up, our difficulties fighting with diabetes slowly diminished. When she was 4 1/2, Marissa attended Camp Glyndon, just north of here near Baltimore, and gave herself her first injection. My wife and I were very proud. Think of what it means for parents to be proud of a four-year-old for doing her own shots.

Marissa no longer fought us about shots or argued about food. In fact, she has been exceptional regarding her diabetes care. She tests her blood sugar a lot - now over 10 times a day. She's worn a pump since she was 11. Whatever we were doing seemed to be working.

In the summer of 1995, finding myself gainfully unemployed, I decided to launch a new web site called Children with Diabetes. I thought that the Internet was the perfect medium to build a virtual support group, open 24-hours a day, for families who had kids with diabetes. As history has shown, I was right.

If you want to understand what it means to be the parent of a child with diabetes, you need visit CWD. You need to listen in on the parents chat room, subscribe to the parent's mailing list, read the stories that parents send in, and laugh at the slivers of humor that we all find in our daily battle with diabetes. I sent an e-mail to the parents list in which I asked for their thoughts about what I should say here today. I asked, "What would you want every pediatric endocrinologist to know?" Here are some of their suggestions, along with my own.

Family Impact

When a child has type 1 diabetes, it impacts the entire family. Parents will see their sleep patterns change forever. Siblings will complain about favoritism and lack of attention. For kids using NPH insulin, mealtimes take on a militaristic regimentation, resulting in enormously unhealthy tension and inflexibility.

My daughter Kathryn complains that all our vacations now are related to diabetes, since we attend the many CWD conferences. Last summer, not five minutes after checking into our hotel in Pasadena, she met a half-dozen other kids her age - all siblings, all sharing the same "why is everything diabetes" feelings. Of course, she had a wonderful time and continues to exchange e-mail with many of these new friends. This shows how siblings are impacted too.

A mom wrote:
Last night, I was fighting a migraine. When the alarm went off at 2 a.m. to test Sam, I gave my husband Neal a little shove and asked him to do it. He sat up, walked into Sam's room, and started fiddling. It seemed to be taking an awfully long time - and I didn't hear any "beeps" coming from his meter - so I wondered what was going on. After a couple of minutes, Neal walked back in, and said, "I can't figure out how to test him."

Uh oh. I said, "What are you talking about? The meter is right there on his desk. You used it right before you came to bed. Sam was low. Go test him." Neal said, "Oooooh! Never mind." And he walked back in. I heard the beeps, Sam was a little high, and needed a correction. Figured I better go in there with the way Neal was acting. The bottom line? Neal was trying to figure out how to test Mo, our yellow lab, and he couldn't get the meter through the hair.

How Do You Measure Success?

How do you measure success for your patient? I assert that there is more to life with diabetes than a low HbA1c. That marker may be what a diabetes team focuses on, but there has to be more to life than that. Families want to know how to live their life the way they want, as if they didn't have diabetes, and it's your job to help them. That is Job 1.

I will assert that a major reason that pump therapy is so popular is the schedule freedom it affords, and not just improved blood sugars. Being freed from the tyranny of NPH is liberating. Remember that.

A mom wrote that you know you're a parent of a child with diabetes when you base your entire self-worth on your kid's last A1C. That's simply not right.
A dad once wrote:
Last night, I grilled up a couple Porterhouse Steaks. Since Nicky loves steak, he asked for a small piece. So we asked him if he wanted to dip it in a little sauce (Peter Luger Sauce or A1, etc.), and said "Yes, I want to dip it in A1c sauce!"

A Blood Sugar is Just a Number

There is no such thing as a bad blood sugar reading. It's just a number. I urge you to instill this notion in every family. Blood sugar readings are the only empirical data we have to help us manage diabetes. If kids equate a blood sugar of 240 with being bad, you'll never see it. They'll wait until their blood sugar is in a range you all agree is "good," then they'll reprogram the date and time on their meter and run a dozen tests. Don't believe me? Ask your teens.

Managing diabetes is like pushing a wet rope. It's just short of a miracle that we get anything remotely resembling good control with the tools we have today. Given that, remember that a blood sugar is just a number. Let's be sure we get the real data.

A mom wrote: Due to our moving into our new home and everything, I've been so tired lately that it's unbelievably ridiculous. Last night, at 3 a.m., I'm sitting on Eric's bed and I look down at the meter and see his number is 16! I start to panic when suddenly something strange happens. He's not 16, he's 15! No, he's not 15, he's 14! He's dropping fast! This has never happened before? What do I do? We need juice fast. Finally I woke up enough to realize that his meter was still counting down.

Get Pumping

Insulin pumps are for kids of any age. Period. Nothing frustrates me more than to hear from a mom who says that her doctor won't prescribe a pump for her child until he's 10 or 12 or some other arbitrary age. The fact is, when a child is young, the parent is in charge of diabetes care, whether it's syringe, pen, or pump therapy.

Some doctors won't prescribe a pump until a patient is in excellent control. That's like telling someone who's starving that you won't give them food until their hunger is sated. Pump therapy is often the only way for some people to get their diabetes in control. Why would anyone not give a patient the best tool available?

Going back to the importance of schedule freedom, the pump is the single most liberating management tool you can offer to your patients. Being freed from the tyranny of the clock is life changing. Why would anyone hold back on a pump when it offers such a dramatic difference in people's lives?

Food

There is no such thing as a forbidden food. With carb counting and insulins like Novolog and Humalog, if a kid wants to eat Frosted Flakes for breakfast, show them how. (I usually suggest a little half-and-half with it.)

You may be able to get a family to limit foods for a while, but you'll never get a teen to do so. Your job is to teach carbohydrate counting, covering foods with fast-acting insulin, correcting when high, and the impact of alcohol on blood sugars. That's real life, and that's what the families are living. Help them.

A mom writes:
The other morning my four-year-old diabetic son asked for a cookie for breakfast. I said, "You can't have a cookie for breakfast." He replied, "Yes, I can. Just give me more insulin!" I now know shots are not a big deal for him! [The boy is right!]
Another mom writes:
My six year old son was diagnosed with Type 1 on April 1 (of all days!) 2002. He is an avid Pokemon fan. We were teaching him how to read the nutrition labels and find out how many carbs are in various foods. One day he picked up a can of light lemonade and said "Mom, this does 2 points damage, can I drink this?" So now we track our carbs by how many "hit points" or how much "damage" a food will do.

Who is Really in Charge?

The patient - or the parent - is in charge of their diabetes care. Her diabetes team - the doctors, the nurses, the dietitians - they are there to help her, but in the end, it's the patient's life to live. The best gift that a diabetes team can offer to a patient is an understanding of how to live life in spite of having diabetes. Then the patient will have the skills and tools and the confidence to succeed in life.

The Internet has changed medical care in profound and permanent ways. Take diabetes, for example. I have always maintained that diabetes management is 90% information and 10% insulin. Perhaps that's my mathematical background, but I posit that it's true. The proof is borne out in the enormous amount of traffic that CWD enjoys - millions of hits every month from hundreds of thousands of users from every country in the world with access to the Internet - even Greenland and Antarctica.

These people are hungry for information to improve their care. CWD satisfies that hunger, and in the process changes completely the nature of care and people's expectations of care.

I would like them to know that we parents are more intelligent than they often make us feel. We need guidance and support, but not lectures. It is far different to read about diabetes in a book than it is to live with it. Each family is different in it's perspective, background and current situation with diabetes. Each child is different from how they accept diabetes to how their body responds to insulin. The parents as the biggest part of the "team". We are there 24/7, we are there at 2:00am, 4:00am, we are there at the basketball game when they are low, we are there at the party when they aren't allowed to have both cake and ice cream. We are there when the A1c is higher than it should be. We are there when the child gives his first injection himself.

One dad writes to another:
Steve - After I got off the CWD.com chat board I followed your advice and called Dr. P's office and we got Jake in this morning. WOW! What a great doctor!

He immediately stopped the insulin program he was on (and stated he was very uncomfortable with administering Humalog at night!) and put Jake on five units of Lantus starting this evening. Marina and I haven't felt this good since leaving the hospital. Nothing against our old doctor, but Dr. P is exactly what we need. I'm so glad I followed your advice and got Jake in today instead of Thursday. Thanks again.
A mom from the Netherlands wrote:
I felt SUCH a relief when I finally connected with other parents of children with diabetes. Only then did I find that I was not alone in this disease and that my concerns and frustrations were perfectly normal. Not to mention ALL that I have learned at CWD and ALL the friends I have made!

Two moms exchanged thoughts about CWD's Parent's Chat Room:

Linda - Mom of Andrew, 11, dxd at 8, pumping / Fri Feb 28 2003 17:02:50 Eastern US I understand that Beth...until I found this chat room (when I got my computer)...I was a basket case, kinda living in a daze, barely functioning. I feel myself getting stronger though. It's about time. Past couple of years have been hard for me too.

Beth (IA) Rea 17, dx'd 7/98, pumping / Fri Feb 28 2003 17:01:10 Eastern US Linda, I am not sure about that, If it wasn't for the people in this chat room, I never would have made it thru the last 2 yrs.

I share these with you to help you understand that parents will do anything to get the best care for their children. In this case, one parent offered advice to another, and it resulted in a dramatic improvement in care for a child. The two moms in the parents chat room felt that they could not have survived without it.

The days of blind adherence to the pronouncements of Marcus Welby are gone. Study after study has shown that a majority of people who use the Internet search for healthcare information. Your patients will find CWD as soon as they search for "diabetes" online - we're #2 in Google, after the ADA. Once they find us, and the many other web sites about diabetes, they will meet thousands of other families and will learn very quickly about Lantus, Novolog, Humalog, the evils of NPH, 504 plans, and the unimaginable liberation that is possible with an insulin pump. They will also find shoulder after shoulder to lean on or cry on. They will realize that they are not alone in this struggle. They feel that they will survive, that their children with thrive. They need this affirmation.

I urge you to be prepared, to be accommodating, and to be proactive in your embrace of the good that the Internet has to offer. You have to be, because your patients will be online, and they will learn.

I want to leave you with a couple of additional humorous notes that families have shared at Children with Diabetes, because they show that even in adversity we can find humor:

A mom writes: My son James has had diabetes since he was 14 months old. I attend a diabetes support group and the subject came up of giving the child with diabetes control over their diabetes. One example they gave was to have the child decide where they wanted their shot (e.g., arm, stomach, thigh, buttocks). The next morning, with his bother Thomas at the table, I asked James, who was 3 at the time, "Where would you like your shot today?" James' response was, "IN THOMAS".
Our 4-year-old son Willy, who was diagnosed when he was two, has been judging how low or high his blood sugar is feeling. One day I asked him if he was feeling like his blood sugar was low or high. He held his hand at his shoulder level and said, "I think it's about here".
My son Jacob was diagnosed at 20 months and is now just about 4 years old. Today our family went to our local JDRF chapter "Walk for a Cure." Jacob asked where we were going and I told him we were walking to find a cure for his diabetes. He thought for a few seconds and then asked me: "What's it look like?" I said, "Excuse me?" This time, he didn't miss a beat and said: "If we are walking to find the cure, we need to know what it looks like so we will know if we find it."

And I'd like to conclude by simply saying that we parents and patients are all looking for the cure. Until it's found, we'll work and walk and worry and pray for our kids. We deeply appreciate our doctors' help and advice, and your caring and sharing attitude. Thank you.

10 March 2003



                 
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