After my child was diagnosed with type 1 diabetes last year, I was shocked, devastated, frightened, angry and overwhelmed and desperately searched for Type 1 diabetes tips and tricks. Even though one of my best friends had diabetes when I was growing up and I knew what a low blood sugar was, I truly had no idea this disease was so complicated. Since I had a reporting and health-writing background, I immersed myself in research as a way to gain control over the situation. I also joined online support groups and learned a lot from the wonderful parents who had been in the “diabetes trenches” for much longer and were so generous about sharing their experiences. Thankfully, I found some products and resources that have made our lives so much easier. In honor of National Diabetes Month in November, I am listing them below. Here is the list I wish someone had handed me in the hospital. Most of the resources will be helpful for adults with type 1 diabetes in addition to children.
1. Dexcom Continuous Glucose Monitor – We ordered the Dexcom a few months after diagnosis upon hearing glowing endorsements from parents. The Dexcom shows a new glucose reading every 5 minutes for up to seven days of uninterrupted wear-time to show where glucose levels are, where they have been and where they are going. Although you still need to take finger stick tests, boy, does it give you a lot more information! You’ll see an approximation of what the blood sugar number is along with arrows telling whether the blood sugar is steady or dropping, rising and how fast. Even better, an alarm will give you a heads-up about lows and highs which is especially great at night, when a child is in school, or playing sports.
Sometimes it acts almost like a crystal ball, giving forewarning about a low before it becomes an official low. Is it foolproof? Of course not, no machine is perfect, but it’s a wonderful tool and number one on my list. In our eyes, managing diabetes without one is like a plane flying without radar. I just wish insurance would cover it for everyone. Dexcom also has a new companion device available, Dexcom SHARE. Through secure wireless connections, Dexcom SHARE allows remote viewing of glucose levels, trends and data between the person with diabetes and their spouse, grandparent or other loved ones from an Apple iPhone or iPod Touch.
2. Blood ketone meter – Endocrinologists are still sending home families with prescriptions for urine ketone strips. People with Type 1 Diabetes need to monitor ketones when they have high blood sugar and/or whenever symptoms of illness are present, such as nausea, vomiting, or abdominal pain. These symptoms may mean you have diabetic ketoacidosis, a potentially life-threatening condition. Most of the time, ketones can be treated at home under the guidance of your diabetes team but it’s important to be on top of the situation.
So let’s say your child has a stomach bug and you need to check for ketones throughout the night. Which makes more sense: take a simple blood test while the child is sleeping and get immediate results about what the ketone level is right now? Or wake up the child, ask the sleepy child to urinate into a cup on demand, and then the results of the urine test tell you what the ketone level was two hours ago. As long as your insurance will cover the test strips, then a blood ketone meter is the way to go. Here is information and reviews on the Precision Xtra NFR Blood Glucose Monitoring System.
3. Insulin pump – When we first started this journey, I had no idea that children wore insulin pumps. Several months later, once we had a pump, we went to a non-diabetes doctor’s appointments at a world-renowned hospital. The doctor was chief of his department and was shocked to see a child with an insulin pump. However, pumps are actually very popular among children with diabetes. This stuff isn’t common knowledge, though, unless you happen to know someone with diabetes. Insulin pumps do have a steep learning curve and the family needs to make a commitment to learning. They aren’t for everyone, however, many people prefer them to shots. Pressing a button on a pump is much more convenient and discreet than giving a shot. Ours, the Animas OneTouch Ping, even comes with a meter that doubles as a remote control to give insulin. When you’re at a birthday party, you can point it at your child and discreetly give insulin while they socialize.
Insulin pumps also have the advantage of giving more precise doses and delivering insulin in smaller increments. This can lead to tighter blood glucose control. Describing the pros and cons of insulin pumps, how they work, and comparing the different manufacturers is beyond the scope of this blog post, but that leads me to number 4 on the list.
4. Pumping Insulin: Everything You Need to Succeed on an Insulin Pump – This is an excellent book and a must-read for anyone considering going on an insulin pump. I recommend the print version so that you can use a highlighter to mark it up. Warning: it took me two months to read and digest it but it was worth the effort. The book teaches you new ways to find your TDD (total daily insulin dose), basal rates, carb/correction factors and boluses and provides ways to stop high & low blood sugars. You will also get the best information on duration of insulin action, bolus on board, and bolus calculators to avoid insulin stacking. It also contains information on continuous glucose monitors.
In addition, Animas offers an excellent series of free webinars on topics such as successful pumping in schools, infusion sets and site success, and using advanced features for smart pumping. These classes provide free in-depth handouts along with a live telephone call where you have the opportunity to hear a lecture and ask questions of a diabetes educator. On their website, click on Community and then type your state in the Find Events in Your Area box. This will bring up the schedule of their upcoming webinars. If you read the book and take the classes, then you will gain a broad understanding of how to get the most out of an insulin pump and it can also help you decide whether a pump is the right decision.
5. EatSmart Digital Nutrition Scale – Professional Food and Nutrient Calculator – Accurate carb counting is essential for management of Type 1 Diabetes. I tried a regular scale purchased from a department store and had no clue what to do with it. Then I heard about nutrition scales. The EatSmart Digital Nutrition Scale analyzes the nutritional content of any food by portion size and was designed by a team of medical professionals. The database stores the nutritional values for approximately 1,000 foods, which have been carefully selected to reflect fresh, whole foods Americans eat. The scale will instantly calculate the following cardiovascular nutrients essential for overall well being: Calories, Carbohydrates, Fiber, Sodium, Potassium, Magnesium, Total Fat, Saturated Fat, Cholesterol, Calcium, Protein, Vitamin K.
Since all I need to know is the carbs, that’s the only function I use. This is a great scale for measuring fruit and vegetables. You can also weigh a serving of broken potato chips or a pancake for example and find out exactly how many carbs are in that serving. There are other nutrition scales on the market, but this is the one that I have used and can wholeheartedly recommend.
6. Diabetes Bag and Pump Cases – Parents of children with diabetes need to be prepared at all times with a glucose meter, test strips, ketone meter, syringes, insulin pens or extra pump supplies, glucose tablets, juice boxes and packaged snacks just to name a few. I tried a diaper bag but it was bulky and not exactly discreet. Then I ordered a tote bag online but it was huge and much better for vacations. My purse isn’t enough because I need something my husband can carry if I’m not with him.
Finally I read about the eBags Piazza Day Bag on a diabetes blog and it saved the day. It’s small but has an amazing number of zippers and pockets. My family was stunned that everything that went in the diaper bag also fit into this compact day bag. It even fits a water bottle. As far as pump cases for children to wear, I like the cases at Pumptastic.com as they have zippers. They also have a great case for the Dexcom which can be worn on the same belt. They come in cute colors and patterns and we can even fit a few candies or glucose tabs for lows.
7. 504 plan and individualized health plan – Parents will need to make sure they work with their child’s school to meet the special needs of a student with diabetes. The 504 Plan sets out an agreement to make sure the student with diabetes has the same access to education as other children. It is a tool that can be used to make sure that the student, the parents and school personnel understand their responsibilities and work through challenges or misunderstandings to avoid problems. The American Diabetes Association has great resources on 504 plans. The individualized health plan is developed as a result of a cooperative effort between the family, health care providers and school personnel. The IHP should address how diabetes medical management for an individual child will be implemented in the school, including details about the who, what, when, where, and how of blood-glucose testing, insulin dosing, monitoring food intake and physical activity. It should also list the student’s typical symptoms and prescribed treatment for both hyperglycemia (high blood glucose) and hypoglycemia (low blood glucose). For more information, visit the American Diabetes Association web site. JDRF also offers excellent resource for managing diabetes in school.
8. Hope that things will get better – I am so glad we are dealing with diabetes now and not years ago before CGMs, insulin pumps and blood ketone meters. I admire everyone who got used to dealing with this disease without all the high tech gadgets that are available today. And things are poised to get even better, which I didn’t know when we were first diagnosed. For me, hope comes from the knowledge that the Bionic Pancreas is under development. It isn’t ready yet but it’s on the horizon. Engineers from Boston University have developed a bionic pancreas system that uses continuous glucose monitoring along with subcutaneous delivery of both rapid-acting insulin (to lower blood glucose) and glucagon (to raise blood glucose) as directed by a computer algorithm. The bionic pancreas automatically makes a new decision about insulin and glucagon dosing every five minutes; that’s 288 decisions per day, 7 days per week, 365 days per year. They have trialed it on adults and children and from what I’ve heard, the results have been amazing with test subjects staying in their target range more frequently and being able to follow a less restricted diet. You can find out more information here.
I hope you found these Type 1 diabetes tips and tricks helpful. For other Type 1 diabetes posts and reviews, visit the Character Crossroads page.
Do you have another Can’t-Live-Without product? Please leave it in the comments, or if comments are closed email me through my contact page if you would like me to consider adding it to the list.
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Stacy Juba has written sweet and sassy chick lit novels, mysteries about determined women sleuths, and entertaining books for young adults and children. Her books include the Storybook Valley chick lit series and the Hockey Rivals young adult sports novels.
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Stacy, the best network on the globe involves moms standing in the gap for their kids. They are as fierce as crusaders arming themselves against an often invisible foe. Your post is well presented and may help many.
I am sending this to a friend whose child was just diagnosed. And I love that you included #8. Super important!
Thanks so much for coming by, Georgia. I totally agree. Beautifully put! I’m so glad you sent it to you friend, Paula. That is exactly what I was hoping to accomplish with this post. The research was so overwhelming and I wanted to make it easier on other parents of recently diagnosed kids, giving them a list of leads to explore. People think they know what Type 1 Diabetes is but they really don’t understand how complicated it is until they are going through it – that went for me also. It’s so stressful to do research when you’re trying to adjust to the daily tasks of managing lows, counting carbs and giving injections.
I am the friend of Paula. Our 9 year old daughter was diagnosed 3 weeks when she was admitted to the ICU with diabetic ketoacidosis. We became suspicious when her thirst could not be quenched and her sudden weight loss (from 70lb to 60lb in about a week.) I picked up a box of ketone strips at the drug store and when we tested her she was off the charts. It has been a whirlwind since then given all the information that we have had learn in a short period of time. Your post will certainly prove to be very helpful in our journey. Thank you Paula for bringing this blog to our attention and thank you Stacy for sharing.
I’m so sorry, Rob. That must have been so scary for your family. Good for you being on top of things. I didn’t even know what ketone strips were back then. I know what a whirlwind it is and what a shock. It’s like a nightmare at first but thankfully it can be managed and you will adjust to a new normal. And thankfully they are coming up with more and more advances. If you have any questions, don’t hesitate to email me. The one positive side of all this – these kids become so assertive, tough and disciplined which will serve them well as they get older. Also check out Diabetic Danica on You Tube – she has lots of informative videos and is a great role models for kids. https://www.youtube.com/user/DiabeticDanica