Letter to the Editor: Reader Responds to Laura Plunkett’s Diabetes Health TV Interview

Laura Plunkett, the author of “The Challenge of Childhood Diabetes,” shared her story of coping with her son's diabetes on Diabetes Health TV. A viewer Bonnie Wright sent her thoughts on after viewing the the video to Laura and Diabetes Health. After her letter, you can read Laura Plunkett’s response.

Bonnie Wright and her family. Her oldest son, Bruce, was diagnosed with type 1 five years ago.

Nov 17, 2008

Dear Laura,

I just finished viewing your clip online.  You seem like a very intelligent and involved mom who decided it was time to take charge.  I applaud you, and I agree with many points you make, but I disagree with your position on food.

When my child was diagnosed with diabetes five years ago, he was 13. He is now 18.  It came from nowhere.  There was no diabetes on either side of my family.  My son was always a good healthy eater and very much an athlete.  However, I was not going to remove cookies and ice cream from my house.  I believe that a carb is a carb. What is different is how fast that carb hits the bloodstream and how many points that carb will raise the body's blood sugar.

Fortunately, my son was always into body image and nutrition.  The thought of McDonald's makes my whole family sick. However, a Carvel ice cream cake on birthdays and having cookies available is not something I will restrict. I was determined to make diabetes fit into our lives, not the other way around. 

I developed a detailed chart, and we filled it out religiously to learn my son's insulin-to-carb ratio.  It was a bit of a roller coaster for a while, especially the first year when his pancreas was obviously spitting out sporadic amounts of insulin.  My chart was a-week-at-a-glance, with detailed itemization of times, insulin doses, activity levels, and injection sites for morning, mid-morning, lunch, afternoon, dinner, post dinner, evening, late evening, and early morning. It allowed us to see how the delicate balance of carbs, activity level, and insulin affects blood sugars.

I checked my son's blood sugar every night for the first five years. The fact that he was on two basketball teams throughout high school was an added challenge for potential delayed lows at night. I was terrified of Dead in Bed syndrome. DIB is/was more of an emotional challenge for me than keeping one step ahead of diabetes itself.  I am slowly coming to peace with DIB Syndrome that is associated with diabetes.  Now at 18, if my son has an extremely active day, I may check him, but the juice, crackers, and glucose tablets are right next to his bed.

I was not going to demand a treatment plan in school. Several moms I met online advocated for a special plan (i.e, What if his blood sugar is high before a test? What if his blood sugar is low before a test?  Don't you think he has the right to take the test again if he does not do well? Yada, yada.)  To my mind, putting that psychological crutch in a child's mind is wrong.  Putting that potential label in teachers' and peers' minds is wrong. Of course I was diligent in quietly watching his grades. Of course I was diligent in ensuring that his blood sugars were in range before he walked out the door to school.

Of course we had a private verbal agreement and plan with his teachers and the school nurse - and meetings each year. But documentation, no way. Documentation produces ignorant opinions and labels, in my opinion.  Documentation in school for diabetes is often paralleled with special needs labels.  Not for me. Not for my son. I recall having to politely remind the school nurse to never use the words "disease," "disability," or "diabetics" in front of my son. I informed her that it is what it is, but we choose to instead call it "a challenge" and "an inconvenience." He is not a diabetic, he is a child who has diabetes. Jargon has always mattered to me.

I was diligent in ensuring my son's preference for managing his diabetes in private.  I made sure that all key teachers knew what diabetes means and what they needed to do and let happen if my son asked to be excused to go to the rest room or pulled out tablets or gatorade in class. The most important thing to my son was privacy and staying one step ahead of diabetes.

My point is that because of and in spite of diabetes, my son has and will continue to succeed and excel without any special accommodations or fanfare.  Adversity is a motivator.

I am so thankful to have had an endocrinologist in the hospital when my son was first diagnosed who said, "If you want to eat M&M's for breakfast, go ahead-it's not the healthiest breakfast in the world, but just make sure you turn over the package and look at the carbs and dose appropriately." My son counts every last crumb of food that he eats and doses his proper insulin-to-carb ratio. We have never had to restrict any food because we have learned what his insulin-to-carb ratio is.

Five years later, we can look at food and the portion size and estimate how many cups it is and how many carbs are in it. Key for us is carb counting every morsel of food, regardless of the food item-no restrictions.  His A1c's have always been in range.  He checks his blood sugar about 10 times per day.  He is not interested in the pump and continues to take Lantus with a syringe and Humalog at all meals  and snacks with a pen. It's so discreet and looks like a Sharpie marker!

I appreciate you letting me email you and the time you took in reading this.  I am very disheartened when I hear parents and educators tell children that they must change their diet and restrict items because of diabetes. It does not have to be that way. 

Thanks.
Bonnie Wright
Mom of Bruce, Jr. (age 18, diagnosed with type 1 at 13), Brittany, 17, and Brandon, 13

 

Laura Plunkett on Diabetes Health TV

Here is Laura Plunkett's response to Bonnie.

Thank you for your thoughtful letter. You sound like a wonderful mother with a terrific son. 

The video you saw was edited and doesn't give the whole picture. My son also eats ice cream and cookies on occasion, but for the most part, those foods don't work for him. My intended point was that if something isn't working, pay attention, listen to yourself and your family, along with your doctor, and make changes. 

In our case, if my son were to wake up and eat M&Ms for breakfast, even on the pump, he would be high and then low, dangerously low. Some children can eat whatever they want as long as they count carbs (which I do mention on the video). No matter how hard we worked with our endocrinologist to make a hamburger and French fries an acceptable dinner option-Danny's meter would invariably read HI (over 500) regardless of counting carbs or bolusing early. Now if he wants a hamburger for dinner, he skips the roll and fries OR he'll have it for lunch when he can watch his numbers throughout the afternoon.

I think we as mothers need to be as kind as possible to one another, supporting each other as we face our unique set of circumstances in long-term situations. In the last two years, I have met thousands of parents of children with diabetes, and I am humbled and awed by the creativity, wisdom, and love that has fueled their decisions.

Thank you for your thoughts on both food and school. I'm glad it all worked out as you wanted it to.

Laura Plunkett

Click Here To View Or Post Comments

Categories: A1c Test, Blood Sugar, Diabetes, Diabetes, Endocrinology, Food, Glycemic Index & Carb Counting, Insulin, Lantus, Letters to the Editor


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Comments

Posted by shosty on 18 November 2008

I think it is important for parents of kids with diabetes to respect each others' choices, which are often based on differences in the children's responses to diabetes, insulin, food, and so on, as well as personality and emotional factors. It is good to tell others how we do things, but we should never feel that our way is the only way.

Bonnie, your child does fine on the Lantus, but our daughter's life was a nightmare when she was on shots. The pump restored some sanity to her life, but I still needed to get up twice a night most nights to check her. Her blood sugars have always been extremely variable, partly because of other conditions that she has. A 2 pm walk around the block would send her sugars plunging at 1 am.

We also had a complicated charting system, and all kinds of complicated ways of dealing with food, exercise and illness, and her HgA1C's were in the 5's and 6's when young, but she absolutely had to be on the pump!

I agree with you on the food issue, and, I think, so does Laura. We never have had sweets around much for any of our kids, but for special occasions, they enjoy things like birthday cake or pumpkin pie. More importantly, we let our child's appetite guide her intake of nutritional carbs (she also has food allergies). Periods of growth, and athletics, like your son's sports, also require a lot of carbs.

If you don't mind, I would like to comment on your ideas about accommodations at school. Accommodations are geared to leveling the playing field, and are not "special fanfare" or a "crutch." In some school systems, a 504 plan is absolutely essential, teachers need to be informed, and everything needs to be spelled out on paper, to avoid emotional, educational or health disasters for the child.

You DO have accommodations for your child. He is allowed to leave class to test, for instance. In some schools, unless this is put in a 504 plan, the child is not allowed to leave, or gets yelled at for doing what he or she needs. This can be dangerous as well as unpleasant.

We advocated strongly for our child, who was diagnosed at age 4. She is now at an Ivy League College, where we also worked on accommodations with the office there. Our child rarely uses accommodations: I believe that in 15 years, she has postponed a test once. But justice demands that she have that chance, if it is needed.

We needed to spell out, on paper, that our daughter would not be penalized if she was late to school or class, if she left class, if she needed to postpone a test, and that she should have make-up help (she never used the latter, either). We had a meeting with teachers every year, and taught them about lows and highs. We had a playground monitor to keep notes on exercise at recess, which was a very necessary response, after our child almost passed out after playing soccer. We had to spell out how field trips and extracurriculars would be handled, and make sure someone was around to do glucagon. We also worked with College Board for permission to test and snack in the SAT's. Some accommodations were for safety, and some for academic fairness.

I wrote the plan, brought it in for a meeting, and the principal and nurse signed it. It was pretty simple, but it protected our daughter and reminded the school of their obligations every year. The meetings were friendly and collegial.

The need for privacy is up to the child. Our daughter did all her diabetes care in the classroom, and a nurse or aide came to the classroom when she was younger, to test and respond to her blood sugar. Obviously, by high school, she was doing this herself.

The other kids grew up being very matter of fact about the diabetes, along with our daughter. We felt she had a right to not miss out on her education through frequent trips to the nurse. Instead, the nurse came to her and she missed nothing. This way, her education was equal to others'. Ironically, this meant less need for the accommodations described above.

I totally understand that some children would not want this, and that many approaches can work well for children with diabetes in schools. It really depends on each situation. Our child required a lot of tests when she was little. If a child only needs one test in the morning, for instance, a trip to the nurse would not affect learning as much as it would for a child who tests 3 times.

Talking about privacy can sometimes be the same as talking about shame. We all need to continue to examine our feelings about our child having an illness. There is grief, and anger, and acceptance: but we also have denial, which can feel like hope. Having diabetes is nothing to be ashamed of, and people with diabetes can certainly approach living a normal life.

But hey, testing 10 times, doing shots, and a mom getting up because she is afraid her child might die overnight, are NOT normal life. There is pain in recognizing this, I know. We have diabetes magazines with people climbing mountains all the time, in reaction to this issue of "disability": I am less interested in my daughter accomplishing feats like climbing Mt. Everest, and more interested in making ordinary life work well!

We know enough not to rely on the understanding and cooperation of institutions, or people in general. Having a 504 plan has some teeth, and can protect children from being penalized for having an illness that takes time and attention to manage.

For legal reasons, it is important that diabetes continue to be defined as a "disability," which offers protection at school and on the job.

Tight control was new in 1995, when our child was diagnosed. We have had to be trailblazers at times, as diabetes care changed in schools and elsewhere. In any advocacy that we have done, we tried to also keep in mind the kids with diabetes who might benefit down the road from our actions.

I have met Laura, and she and her child benefit from a very supportive extended family, and receive a lot of respect from the doctors and schools that they use. However, I think Laura is aware that not everyone has that kind of support, and respect, and every time a well-supported person does a 504 plan, the family that is isolated and struggling also benefits from it.

Posted by Anonymous on 18 November 2008

I appreciate Bonnie's interest in her son's right to live a "normal" life but it appears as though a little nutritional education would benefit her son more than compromising his "inconvenience" with things like thinking that finding an endocrinologist who thinks that having M&M's for breakfast is OK.
It is not ok for people with diabetes and it is not ok for anybody who is interested in promoting good health. As the increase in sweets & virtually all processed / refined foods increases so does the disease rate. (check the facts - look at NHANES from the early 70's to date) There is a direct correlation between the amount of refined carbs and many chronic diseases. Especially for people who have a "challenge" to begin with, adding more "inconvenience" seems to be counter intuitive. I know Bonnie loves her son and believes she is doing the right thing -I do not doubt that. But I believe that looking at the science supporting a low carb, whole food diet will change the way she thinks about what is good for her son.
I wish them both well.

Posted by Anonymous on 18 November 2008

Great article, but I think both mothers are missing the point with eating-as are so many others without diabetes! Everyone, whether they are diabetic or not should be looking at their diet and trying to eat well. Having M&Ms at breakfast or anytime of the day is absolutely wrong! You said your child is an athlete and a very good one at that. What is he repairing his body with when it is being torn down with all that exercise? Fries, cokes, and m&m's? If you don't put back into the body good whole nutrition after a workout, you are doing more harm than good. The body needs good whole food nutrition to function properly.
Why do we feel that it is so important that we give our children junk food in the first place? Food that has no value whatsoever.
My son has had type 1 diabetes for 10 years. It was a shock for us too, being that he was a top athlete and no history of diabetes in our family. When assessing the situation, I knew that we had to make some changes to all of my family eating patterns, not just my sons or down the road we are all going to be sick.

Posted by Tams on 18 November 2008

I read all of this and it amazes me. When I was diagnosed at 4 years old, that was 31 years ago I was urine testing(finger poking was not available then) and not eating any sugar at all. To give you an idea, when I was diagnosed the dietition told us that Cornflakes cereal should be avoided because it was too high in sugar. Boy have times changed! There was no talk about eating sugar at all. I couldn't have it I was a diabetic. Having b-day cake, M&M's, pumpkin pie etc. wasn't even an option. I didn't have the luxury of humalog, lantis etc. If I had a high blood sugar my mom and I walked around the block for 2 hours to bring my sugar down. When I read all of these things I sometimes wonder if it was easier when Diabetes meant not having sugar. I lived a healthy, successful life without the b-day cake. Diabetes is a different "challenge" now than it was 31 years ago. I guess what I am trying to say is, I wouldn't make a big deal out of food. Sometimes I think too much emphasis is put on being able to eat all the garbage that diabetics can now eat. Don't eat it and you will be healthier for it diabetic or not.

Posted by shosty on 18 November 2008

Just to clarify: I agree with a healthy diet. Our family already had a health diet, before our daughter was diagnosed. But I also agree that food should not be a big issue, and having seasonal, holiday treats is, in fact, possible. But the emphasis, for everyone, should be the gathering of people and the reason for the holidays, with the food as a sort of accessory!

The bigger change for people with diabetes does not have to do with sugar and treats, but the idea that healthy carbs can be eaten in whatever quantity is healthy. Potatoes, brown rice, whole grain bread and pasta, used to also be limited for people with diabetes.

Tams, I understand what you are talking about. In 1970 I had a job taking care of a retired Harvard professor with type 1 diabetes, who had gone blind and had a lot of other problems. I was only 22, and not a nurse. I had to do the urine strip and draw up the insulin based on that, a method that would be considered so primitive today (there is such a time lag between urine and blood sugar, of course). His diet was strict, but I would find him sneaking a stream of sugar into his tea!

Even when our 4 year-old was diagnosed in 1995, things were so different. On shots, she could not have anything with sugar, and things like bagels, potatoes and bananas shot her too high, no matter what dose shot she had. For some reason, on the pump, she can eat anything without that effect, although she does know to dose a little higher for meals with certain foods.

Tight control is a mixed blessing. The lifestyle is tough, if people really pay attention to numbers and test a lot. Running close to normal blood sugars can bring parents and kids a lot of anxiety about lows, especially overnight.

My father's cousin got type 1 in the 1920's. She had a shot in the morning, and they hoped for the best. When they, as kids, played hide and seek, sometimes she would be "found" behind a bush, passed out.

Eating healthy is good for everyone, but, with kids, being too strict and too dogmatic can backfire. This mom didn't give her son M& M's for breakfast, and the doctor was trying to make a point. Too many people think diabetes means restrictions. This mom put a lot of effort into figuring out how to enable her son to eat well, with choices, and it sounds like they did a great job.

At the same time, if Laura's son does better with a low carb diet, I believe her, and support her. Her ideas, and others', about keeping insulin amounts down in response to carb reduction makes a lot of sense, and her son and family have tolerated it.

Our daughter now has multiple food allergies. I wish we were back in the days of debating about how many carbs she should be eating!

Posted by Anonymous on 18 November 2008

Shosty,

Testing 10x a day and having a mom worry that her child may have a low at night due to DIB is very normal. An athlete, especially young high school boys basketball teams practice 2-3hours a day 6 days a week which does not include away games and travel. Times this by 2 basketball leagues and testing 10x per day is very normal to keep in touch with blood sugars.

Additionally, privacy does not mean shame as you have eluded. One must look at the age of a child who is diagnosed. Being diagnosed at 4 years old versus being diagnosed at 13 is very different. It seems 5 years later, this mom's son obviously is aware that his name and story will be published, thus has moved past total privacy desired during high school years.

Its important to listen to our children and support them. Its important to not pass judgement. It is obvious that both Bonnie and Laura are two very good mom's who care enough about this issue to let their experiences and passions go to print.

Posted by Anonymous on 20 November 2008

"shosty" stated, "But hey, testing 10 times, doing shots, and a mom getting up because she is afraid her child might die overnight, are NOT normal life."

Are you serious? Any elite athlete checks his/her blood sugar at least 10 or even 12 times a day...just ask Adam Morrison (NBA player for the Charlotte Bobcats) or Jay Cutler (pro quarterback for the Denver Broncos)

"shosty" you are an example of how ignorant people can be.

Posted by Anonymous on 21 November 2008

Dear Anonymous on November 20th,

Thank you for your post. Thank you SOOO MUCH!

Posted by Anonymous on 4 January 2009

I think you have to find a balance. For a parent of a child I think you have to be careful of the emotional side of being so restrictive. Rebellion can be a dangerous side effect years later. Our endo was more concerned with covering carbs with insulin and not so much worrying about being so restrictive when our teen was diagnosed. This proved to be a healthy approach. Our son is conscientous, independent, and has a good A1C in his twenties now. Let us not forget about the emotional impact of type 1.

Posted by Deseentesmate on 13 March 2009

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I do not know the right sort of a link and it is not clear to you at the forum how to do it.
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