Tis the season for giving

October through December is unofficially known as “the giving season” by non-profit corporations. According to Winter 2011 issue of the Nonprofit Fundraising Survey, over half of non-profits say they receive at least a quarter of their donations during this time and 16% of organizations in the survey said they receive closer to half of their annual contributions during these last three months of the year.

Making charitable contributions has a lot of benefits. Not only does donating to a non-profit make you feel great, but it allows you to have an impact on a social issue you care about. And let’s not forget the tax benefit. Generally, you can deduct 100% of cash donations from your adjusted gross income–the amount of earnings you must pay tax on) up to 50% of your AGI.

If you are looking for a way to reduce your tax bill and feel great about supporting a worthy cause, consider contributing to an organization dedicated to improving the lives of those living with Type 1 Diabetes, or supporting one of the many research projects seeking a cure or improved medical treatment for T1D. Here are some great options:

JDRF (Juvenile Diabetes Research Foundation)–JDRF is one of the only non-profits dedicated to funding research on Type 1 only (not Type 2). Charity Navigator rates the organization 3 out of 4 stars and notes it directs 78.8% of its donations to research and education. To donate, go to http://www.jdrf.org.

The American Diabetes Association works tirelessly to raise awareness of all forms of diabetes…many in the T1D community (myself included) have been critical of the ADA because it often conflates Types 1 and 2 in its Public Service Announcements (PSAs). Still, its cause is worthy. Charity Navigator rates the ADA 3 of 4 starts and notes it spends 67.1% of its revenue on its programs. To donate, go to www.diabetes.org.

Diabetes Action Research and Education Foundation (that’s a mouthful) funds medical research related to diabetes. Charity Navigator rates the organization 4 of 4 stars because more than 96% of its contributions are given as research grants to universities and independent researchers working in diabetes. Two of the projects DAREF has helped fund include Dr. Faustus’ research of a generic prescription drug to reverse Type 1 and Virginia Tech’s research investigating whether a gluten allergy might trigger T1D. To donate, navigate to www.diabetesaction.org.

Joslin Diabetes Center, affiliated with Harvard Medical School, was established in 1898 and has dedicated itself to prevention, treatment, and cure research ever since. It has been at the forefront of diabetes research for over 100 years. It is ranked 3 of 4 stars and 78% of its funding goes toward research. To donate, go to www.joslin.org.

One Walk, 2015

The cooler weather (yay!) means one thing…well, actually it means lots of things, but what I am most excited about is the upcoming JDRF One Walk! One Walk is a fundraising walk-a-thon to support and raise money for the Juvenile Diabetes Research Foundation. There are many organizations committed to raising awareness of diabetes, but my family chooses to support JDRF because it one of the only organizations committed solely to Type 1, or Juvenile, Diabetes instead of both Types 1 & 2, and because the organization spends its money in ways that are important to us.

Cole cuts the ribbon to begin the 2014 Walk in Front Royal, Virginia.

Of the organizations $215 million in annual expenditures, about 80% does toward education and research related to T1D. Some of the projects JDRF funds include the bionic pancreas project out of Boston University, University of Virginia’s artificial pancreas project, Viacyte’s stem cell encapsulation, and UNC’s smart insulin patch research.

Last year was the first time my family put together a team–Team Crazy for a Cure–and participated in the walk. It was such a great experience for Cole because he was able to meet other kids and teens with Type 1 Diabetes. And he was chosen to cut the ribbon to begin the walk, which made him feel like an important member of this awesome T1D community.

Team Crazy for a Cure will be walking again in Front Royal, Virginia to raise money for JDRF. If you’d like to join us, email me at marti2cs@gmail.com. And if you’d like to donate to our team fundraiser, please click here!

We appreciate your support in whatever form it comes!

Food Rewards, Part II–Fun and healthy alternatives!

Parents and babysitters everywhere are rejoicing! The school year is just around the corner and so I thought I’d revisit an issue that I’m rather passionate about–food rewards in the classroom. Last school year, I wrote a post about how food rewards can have an opposite effect than intended for students with Type 1 Diabetes or any food allergy or dietary restriction. I’d like to follow that up with ideas for alternatives because rewards in the classroom are important. If used correctly, they can motivate students and give them something to work toward by rewarding good behaviors and successes. So here’s my top ten list of classroom reward ideas, none of which include food or candy!

  1. Free Homework Pass–ah…who doesn’t want a day off from homework? This is great for younger and older students!
  2. Extra Recess Pass–for the younger kids! Arrange the extra time with another class and reciprocate for that teacher’s students! Or use as a whole class reward when the entire class meets a goal, such as meeting a reading goal or passing a test.
  3. Classroom Helper/Teacher’s Pet for a Day–all ages can help by passing out class materials, giving instructions for assignments, etc. Ask the student what she/he would like to do to help out!
  4. Spirit Day–If the entire class meets a goal, host a spirit day for the class–funky socks day, crazy hat day, dress as your favorite book character day…the kids will come up with a lot of creative and fun ideas!
  5. Free iPad/Game Time Pass–Allow the pass holder to use the classroom iPad during down time.
  6. Movie Time–If the entire class meets a goal, reward the students with a movie one day. Let them vote on the movie selection!
  7. Local attraction coupons–Ask local businesses to donate free passes or discount coupons. Great ideas include bowling, skating, miniature golf, batting cages, and more!
  8. Funky school supplies–Keep a stash of fun erasers, pens, and other items kids of all ages might enjoy–after holiday sales are a great time to stock up. ABC catalog and Oriental Trading also have great deals when you buy in bulk. Keep a treasure chest in class for those reward occasions.
  9. Auction Day tickets–One of Cole’s teachers hosted an auction at the end of every grading period. Throughout the period, students would receive tickets for good grades and good behaviors. At auction time, the teacher asked parents to donate items and the kids used their tickets to bid on items. Hands-down, this has been the most successful rewards program Cole’s experienced. He loved it! It also teaches students about consumerism and economic value!
  10. Water/Snow Day–in warmer climates or toward the end of spring, host a water fun day if the entire class meets a goal. Pick up water shooters for a $1 each at the dollar store, as well as some water balloons. Hook up a sprinkler and let the kids have fun! On snowy winter days, allow the kids to have recess or play time in the snow. Have a snow sculpture contest–even the older kids will love this!

What other ways do you have for rewarding children in school? Share them in the comments!

Happy 2nd Anniversary

July 9th marked the second anniversary of my son’s diagnosis of Type 1 Diabetes. For about a year or so after my son was diagnosed, I often thought of our lives in terms of two distinct stages–there was life before diagnosis and there was life after diagnosis. Learning to manage the disease while undergoing a huge lifestyle overhaul was challenging, to say the least. But it has gotten easier in the last year.

I honored the momentous day–not just two years with diabetes, but two years of successfully managing diabetes–by going to the doc myself and getting an annual checkup, my first since Cole’s diagnosis. I know, I should be ashamed, but to be honest, I had kind of put my own health on the back burner while I focused 100% on my son’s health and medical needs. Turns out, I have something else to celebrate! My blood work came back and it was pretty fantastic! Since my last check up (Which was June 2013), my cholesterol dropped from 177 to 125 and my HDL was squarely in the normal range (it had been too low previously). What’s more, my fasting glucose was 94, down from 106 previously. I had also lost 12 pounds.

I think about our family lifestyle before diagnosis, and remember eating out at least 4 nights a week, baking cookies and sweets weekly, and keeping a candy jar stocked. That all changed on July 9, 2013, of course. If not for my son’s disease, we would probably have two diabetics in the household–a Type 1 and a Type 2. I would probably be on cholesterol meds and may have even weighed more instead of having lost weight.  I hate to say it, but my son’s disease may have saved my life.

Diabetes is a horrible disease and I wouldn’t wish it on anyone, but at least in this household, it has delivered some benefits, such as enforcing a healthier lifestyle on the entire family. How has diabetes changed your life?

122+90+12+35/12=birthday party insanity

As a parent of a child with Type 1 Diabetes, I have had to become many things–a nurse, a dietician, a mathematician, and more. The math, believe it or not, is almost always the easy part because there’s only one possible answer to 2+2. I have memorized carbs for many of my son’s favorite foods, but when I use a recipe,  

 especially one that I am making for the first time, I have to add up all the carbs in the recipe and divide by the number of servings to determine the number of carbs in each portion. Once I do this, I can add the food, serving size, and carbs per serving in my son’s Omnipod PDM.

Every once in a while, however, the numbers fail us. My husband learned the hard way that nutrition labels can be very confusing.mrhe label on many pancake and baking mixes, for example, will list the calories, fat, carbs, and protein in dry mix and prepared mix. However, the serving size weight applies only to the dry mix. On Mother’s Day, my husband and my son made pancakes for breakfast. They weighed the pancakes and calculated the carbs based on the prepared carb value provided by the label–they came up with 72 carbs for three pancakes and delivered insulin to cover that many carbs. When my son’s BG tanked 45 minutes later, I realized their error. The actual carb count was about 17 carbs per pancake. My son ate three, so he should have administered insulin to cover 51 carbs instead of 72.

Lessons like this are tough ones to swallow. It sucks to realize you’ve made an error that causes potential harm to your child. Really sucks. But, those mistakes become valuable learning tools and they remind us that diligence is necessary 24/7 because diabetes never takes a break.

Product Review: Dexcom with Share

This morning, I was awakened at 7:10 by my iPhone. It wasn’t my alarm clock; it wasn’t a text. It was my Dexcom Follow app telling me my son’s BG had been under 90 mg/dL for 30 minutes and he needed to treat his low blood glucose levels.

The Dexcom is a Continuous Glucose Monitor that operates by inserting a wire-like sensor under the skin to detect BG levels. It sends a BG reading to a wireless receiver every five minutes. Share is a new program that enables the Dexcom receiver to send the BG readings to an iPhone via Bluetooth. The wearer’s iPhone runs the Dexcom Share app which sends the readings to iCloud, and my app, Dexcom Follow, grabs those readings 24/7. The Follow app comes with two alarm settings–one alerts after the main user’s BG is under a certain number for more than 30 minutes, and the other, an emergency alarm, alerts immediately when the BG falls below a certain number. The defaults for each are 70mg/dL and 55mg/dL, but I changed my settings to higher numbers for peace of mind.

The alarm this morning demonstrates why I LOVE the new Share program. My son does not wake when his BG is low, nor does he hear the alarm on his Dexcom, which is set to alert at night as soon as he goes below 90mg/dL. I am able to sleep soundly knowing that my phone app will sound an alarm if my son is not treating his low BG. So far, the app has alarmed twice–this morning and last weekend when my son was at a sleep over (his first since diagnosis in 2013!). On that occasion, I telephoned the host’s parents (at 5:30 AM 😒) and they woke my son and gave him juice. Both times, Share intervened before my son dropped to dangerously low BG levels. Medical technology at its best!

The app has operated without a hitch for the most part. When we first started using Share three weeks ago, there were a few times when iCloud or Follow lost the readings, but that issue seems to have been addressed with the most recent system upgrade (note this was not an app upgrade, but a service upgrade that resulted in Share being down for several hours during the day). We received notification via email that the service would be down for six hours  two days before it happened. At first I was annoyed the upgrade was happening during the day, until I remembered that the real value for users and their followers is probably at night, so yeah…thanks for being on top of it, Dexcom! The upgrade took less than the anticipated 6hours and service resumed without us having to do anything.

The other issues we’ve encountered have been primarily with the Dexcom, not Share, and my son’s youth. BGs in children can drop quickly, really quickly, like 5+mg/dL per minute. The Dexcom can detect readings dropping 3+mg/dL but it really cannot keep up with faster drop rates. So when my son is dropping 30 points in five minutes, the Dexcom loses accuracy. Dexcom is aware of this, but there’s not much to be done until the technology improves. In fact, every time we insert a new sensor (every week), our new receiver that supports Share flashes a warning that in Pediatric trials, Dexcom caught fewer than half the low BGs. This is why we’ve set alarms at higher numbers, and it seems to work for us. The Dexcom catches more of my son’s lows than it misses–though it does miss lows weekly–but it is still worth it, especially now that Share is available.

Pricing for Share varies based on insurance. If you are getting a Dexcom for the first time, the receiver that supports Share is included and will set you back a bit over $1000 plus the cost of the transmitter and receivers. The entire package is close to $5,000 but most insurance companies will cover a portion. After insurance, we paid a little over $800 for the receiver (prior to release of Share), the transmitter, and a three month supply of sensors when we first got the Dexcom a year ago. When we upgraded to the receiver with Share last month, we were eligible for a reduced price of $199–this was not covered by insurance, which will replace a receiver once every 3-4 years only.  If you want to upgrade your old receiver, watch the Dexcom website for special promotional offers through the summer.

Note this is an unsponsored, unsolicited review.

Coaching an athlete with T1D? This post’s for you!

Cole pitching for the first time during fall ball.
Cole pitching for the first time during fall ball.

Cole was a pretty active kid before his diagnosis, but now that we know exercise makes insulin “work” better, we keep him active all year long–spring and fall baseball, basketball, swim team, and archery. Less than a week after his diagnosis in Summer 2013, he was back in the pool, competing in a swim meet (yes, I was a nervous wreck!). We were fortunate because his swim coach was familiar with the disease and did all she could to ensure Cole was safe. But not all the coaches we had were that caring. Most have fallen somewhere between mildly accommodating and indifferent. Thankfully, no one has been outright unsupportive (though I do think his baseball coach this spring was less than thrilled when I told him Cole could not slide into base because he’d rip his CGM out). I don’t think these are bad coaches…they just don’t know anything about Type 1 Diabetes, and many likely confuse the disease with its more vilified namesake, Type 2 Diabetes.

I’ve started giving my son’s coaches an information sheet on Type 1 and a list of tips for coaching an athlete with Type 1 Diabetes. Here’s what I include on the sheet.

About Type 1 Diabetes

Type 1 Diabetes (T1D) or Juvenile Diabetes is caused by an autoimmune response in which the white blood cells attack healthy beta cells in the pancreas, eventually destroying all pancreatic function, including the ability of the pancreas to produce insulin. Individuals with T1D must rely on insulin therapy to live—this includes injecting or pumping insulin throughout the day. The disease most often strikes in childhood through early adulthood. It is NOT caused by lifestyle or obesity.

Managing T1D involves monitoring blood glucose levels numerous times a day to avoid hyper and hypoglycemia. Hyperglycemia occurs when the glucose levels in the bloodstream are too high. It might result from a problem with insulin delivery, miscalculation of or a missed insulin dose, or eating a meal that is high in fat (which slows the processing of carbs). Symptoms of hyperglycemia include headaches, fatigue, irritability, frequent urination, and extreme thirst. If not treated, hyperglycemia can lead to ketoacidosis—a condition in which the high levels of glucose in the blood make the blood acidic. Ketoacidosis can occur after only a few hours of elevated glucose levels, and if left untreated, can lead to seizure, kidney failure, brain damage, and more.

Hypoglycemia, or low blood sugar, has more dire short-term consequences for those living with T1D. Hypoglycemia may be caused by increased activity level (exercise makes the body process insulin more quickly), or a miscalculated insulin dose. Symptoms include weakness, headache, loss of motor coordination, hunger, fatigue, and blurred vision. Hypoglycemia requires immediate treatment, such as drinking juice, eating candy or something sweet, or taking glucose tablets. If left untreated, a diabetic experiencing hypoglycemia can pass out, have a seizure, or even die.

Medical technology has made the management of Type 1 Diabetes easier than ever before. Insulin pumps can be worn on the body and drip insulin constantly throughout the day and night. Some pumps, such as the Omnipod, can be worn 24/7, including while in water.

Continuous Glucose Monitors (CGMs) are also worn on the body and take live blood glucose readings every five minutes. The reading is transmitted wirelessly to a receiver, which also shows trends such as falling or rising blood glucose levels. CGMs are not perfect and readings are generally about 5 minutes behind. In children, readings tend to be delayed more simply because glucose levels can drop or rise quickly (more than 5 mg/dL per minute).

 There is no cure for T1D, but medical technology makes living with the disease as unobtrusive as possible. Still, there is no substitute for vigilant monitoring and good disease management. This includes eating a healthy, balanced diet, getting plenty of exercise, monitoring blood glucose levels regularly, and injecting or pumping insulin daily.

Tips for Coaching an Athlete with Type 1 Diabetes

  1. Educate yourself about T1D! Some great resources include the American Diabetes Association website, Juvenile Diabetes Research Foundation website, and the Diabetes Research Institute website.
  2. Learn to recognize the symptoms of hypoglycemia:
    • Paleness (especially in the lips)
    • Weakness
    • Fatigue
    • Hunger
    • Dizziness
    • Loss of Motor Coordination
    • Headache
  3. Know what to do if you suspect your athlete’s blood glucose is low:
    • Check BG by doing a finger prick
    • Administer glucose (tablets, juice, candy) if BG is under 80 mg/dL
    • Provide a protein/carb snack if BG is under 100 mg/dL
    • Delay exercise until BG is above 110 mg/dL
  4. Seek training in glucagon administration in case of emergency (parents can be a great source!)
  5. Understand that your athlete will need to check his/her BG before, frequently during, and after exercise. Provide a designated space for the athlete to keep his/her glucose monitoring and treatment supplies during practices and games.
  6. Make sure your athlete stays hydrated—diabetics are prone to dehydration, which can lead to ketoacidosis, even with normal BG levels.
  7. Talk to your athlete and his/her parents to learn how they are managing the disease. Find out if the athlete uses an insulin pump or CGM. Ask about how activity level affects the athlete. Discuss the athlete’s symptoms of hypoglycemia.
  8. Ask your athlete how you can support him/her!

Diabetes and 504 Plans

It’s 504 season…If you have a child living with Diabetes, now is the time to create or update a 504 Plan for the 2015-2016 school year.

504 Plans establish accommodations that teachers, school nurses, and administrators must provide to ensure the medical and educational needs of qualifying students are met. This educational plan was established by Section 504 of the 1973 Rehabilitation Act, which made it illegal to discriminate against those with disabilities, long-term illness or a physical impairment. For years, those living with T1D were often denied protection under 504, but in the last ten years, the Office of Civil Rights, the federal office that fields complaints of violations of 504 and the Americans with Disabilities Act, has included diabetes in its list of diseases that warrant protection.

Often times, people think 504 is redundant of the Individuals with Disabilities Education Act, but this is inaccurate. Whereas the IDEA specifically offers rights and accommodations to individuals with learning disabilities, Section 504 extends accommodations to those who do not have learning disabilities, but who may need accommodations for other reasons.

A typical 504 Plan for a student with Diabetes should include mandates that:

  • there be a staff member trained in glucose monitoring, insulin administration, and glucagon administration at all times.
  • the student with Diabetes be permitted unrestricted access to the bathroom and water fountain–staying hydrated is crucially important in preventing ketoacidosis, especially during periods of high blood glucose levels.
  • the student with Diabetes be able to eat without restriction to treat low or falling glucose levels.
  • a trained staff member accompany the class on field trips and all off-site evacuations and drills.
  • the student not be penalized for missed classwork due to medical treatment (such as treatment for low blood glucose).
  • the student be given flexible testing dates if he or she suffers a hypoglycemic episode up to 2 hours before or anytime during a test–this is really important because it can take up to 18 hours for a person experiencing hypoglycemia to recover cognitively.

My son’s 504 plan also includes the following accommodations:

  • The student can leave for lunch up to 10 minutes early so that there is time to dose insulin in the nurse’s office before lunch.
  • The student can have extended time for lunch if he or she is not finished eating at the end of the class lunch period.
  • The student can travel to and from field trips in a parent’s car to allow for restroom breaks.
  • The teacher will inform the parent 24 hours in advance of any food treats or parties with food so that arrangements for insulin administration can be made.

504 plans are so, so important for a child with Diabetes, as they ensure the child is not penalized for class time missed due to medical care. Two years ago when my son was diagnosed, I met with a lot of resistance from school administration when I requested we do a 504 plan. I spent a lot of time educating the principals and the school psychologist, all of whom felt accommodations were unnecessary. However, now that they understand how high and low glucose levels affect physical and cognitive functions, they are 100% on board and have even initiated 504 plans for the three students at the school who have been diagnosed with T1D since Cole was diagnosed.

My next post will be about Diabetes and sports–Cole is very active in baseball and swimming. Unfortunately, we haven’t always had positive experiences with coaches because they don’t understand diabetes. I’ll post an information sheet I now provide my son’s coaches that helps them understand T1D and teaches them how they can support Cole and all athletes with T1D.

Ketones 😨

 When glucose levels in the blood become too high, ketones develop. Ketones are a byproduct of the body burning fat for energy instead of carbohydrates. In diabetics, this happens when there is not enough insulin to deliver carbohydrates to the cells to convert to energy. Ketones are dangerous for diabetics–Type 1s, that is–because they cause the blood to become acidic, a condition called ketoacidosis. Ketoacidosis over a prolonged period (weeks to months) can lead to kidney disease and other life-threatening problems.

This morning is the first time my son has had ketones since he was diagnosed in 2013. The only reason we can think that this happened is that his pump site has gone bad–this means scar tissue has formed around skin where the cannula (a hollow needle that delivers insulin) enters.

Treatment is straight forward–remove and replace pump, inject insulin every three hours, and drink plenty of water until there are no ketones. And if this doesn’t work…to the Children’s Hospital we go.