My daughter was 8 when she was diagnosed with type 1 diabetes.  One of the glaring signs that something was wrong with her – besides the excessive drinking – was that she looked so fragile.  Hannah had been riding horses for 4 years, grooming them, putting on their tack, jumping them over rails, handling temperamental ponies …. and all of a sudden I was worried she was going to fall off.  As soon as we had the diagnoses and started the intense learning process of caring for a child with T1D, we reassured her, “You can still do anything!  Well, you can’t be a commercial truck driver or serve in the military, but you can still ride horses!”

Boarding a horse is so expensive, we ended up moving to “the country” so we could support her passion.  And I had to learn how to hook up a trailer, load a horse and tow it to town.  Not an easy feat for this child of the suburbs. Then because the all-encompassing horse care apparently wasn’t enough, Hannah started showing an interest in riding motorcycle trials.  If you haven’t seen this, it’s pretty darned cool.  Riding a dirt bike that doesn’t have a seat, the rider has to slowly ride obstacle courses over rocks and logs, while standing, without putting his or her foot down.  Hannah’s inherent balance from riding horses gave her an advantage in riding trials.  And now we have a garage full of dirt bikes, about 20 yards from the horses.  But how could we not support our kid that wants to be active, let alone a great ambassador for learning about T1D?  She can do anything!

Which brings me to school.  My husband, Joe, is of German descent, still has family in Germany.  So it seemed like a natural choice that our daughters chose to learn German in junior high.  “Learning German is great!  You get to go to Germany!”  (i.e. “You can do anything!).  I can’t quite remember when it occurred to me that sure, she can go to Germany, but um, one of us needs to go with her.  Yes, there would be a teacher and parents with her, but my mind couldn’t even fathom sending her to another country unless accompanied by her parent(s).  Or maybe her endocrinologist or diabetes educator.

Here are some things we did to make the trip overseas a success and diabetes-related issues manageable:

– Had a note from our CDE that Hannah can carry glucagon, syringes, insulin, etc.

– Packed our completed copy of “Type 1 Diabetes and Babysitting” that has all of her basal and bolus ratios, and walks a person through what to do for lows and highs

– Kept her insulin in its original prescription box

– Had 2 identical bags of diabetes supplies, including insulin, insertion sets, syringes and glucagon, one for Hannah and one for Joe, that did not get checked as baggage (insurance in case a backpack was lost or stolen)

– Temp basal (more insulin) for long plane and train rides

– Changed the time on her pump as she went through each time zone so her basal rates would (in theory) stay the same –

Set up international cell phone plans for outings where Hannah and Joe were not together.  Downloaded free texting apps such as WhatsApp

– Packed a lot of gluten-free alternatives as Hannah has Celiac’s Disease

Last week, as we were preparing for the first camping trip of the summer, I realized that we are in a pretty good place in terms of diabetes organization.  I think it is so important to be on top of supplies, current prescriptions and emergency instructions so that when you are blindsided with a 400+ blood sugar reading, or a 40 blood sugar reading, at least you and the people around your type one kiddo can take care of him or her.  So what can you do to get organized and stay organized?

1.  Have a central location for all of your supplies.  It might be a closet, a cabinet, a shelf, a plastic tub …. whatever you can designate as that sacred space for only diabetes-related items.  This is where you store everything that is not being carried with your child:  pump infusion sets, reservoirs, syringes, insulin pens, alcohol wipes, lancets, test strips, glucagon, batteries, treatments, protein snacks, cake gel, reference materials.

You may choose to keep insulin here as well if the temperature is around 70 degrees.  We keep the current bottle on the counter with our daughter’s meter, while unopened vials are stored in the refrigerator.

2.  Keep your supplies well-stocked and up-to-date.  Both spring and fall (before school starts) I check glucagon kits and make sure they are not expired.  When we open the last box of reservoirs, infusion sets or test strips, I immediately order the refill so we always have enough.  This is one thing I just do not put off!

3.  From our book Type 1 Diabetes and Babysitting: A Parent’s Toolkit, I made a 4×6 notecard from the chapter, What to Carry With You and When.  This notecard is posted above our supply shelf, and when we prepare to go on a trip or anywhere an hour away from home, I simply refer to this card to quickly make sure we have everything we need.

4.  Have insulin doses updated and easily found.  Again, in Type 1 Diabetes and Babysitting: A Parent’s Toolkit there is a place to quickly jot down either pump settings or insulin schedules.  This is REALLY handy when you are out of town, have to call the endocrinologist and they ask, “What are your child’s basal rates?  Carb ratios?”  Help can come much faster when the information is at your fingertips.

Being organized when it comes to diabetes can not only affect your child’s health, but it helps everyone in the family be a part of your child’s care.  And THAT is a very good thing ….

Sometimes I feel like Edgar Allan Poe knows my soul, as I stumble out of bed to check Hannah’s blood sugar in the middle of the night.

There’s been a progression of the necessity for these midnight checks.  When she was first diagnosed, this whole world of diabetes was brand new to us and our lack of knowledge meant we just did what we were told.  Night after night, I crept into her room, hoping she was still breathing, relieved every single night I could wake her and check her blood sugar.  I’d jump out of bed if the baby monitor picked up the slightest rustle.

Then we started to see patterns in her numbers.  Low at bedtime?  Give her a snack!  Remember the carb counting plan, i.e. 15-30 carbs for a snack?  We got around that with CarbSmart ice cream mixed with peanut butter.  And although our Certified Diabetes Educator gave us permission to forego the midnight checks, we still had that fear of “what if….?”  It only takes one story of a child who had a seizure in the middle of the night to have that nightmare implanted in your brain.

After a while, I felt fortunate that we didn’t have to check Hannah at all in the wee hours…. and then technology reeled us right back in.  New pump?  Gotta check every few hours!  New sensor?  Have to calibrate!  I don’t know about your kiddo, but Hannah  is impossible to wake up once REM sleep sets in.  Our middle of the night checks take at least 30 minutes.  Sometimes more when I end up falling asleep in her bed.

What do you do when you have a sitter, or a grandparent, caring for your child through the night?  Do you every feel like you’re imposing on them?  Or like you’re being thought of as overprotective?  The month before we entered the world of T1D, my motherly instincts were screaming, “Something’s not right with your girl!”  Thankfully, I listened to them, and you should, too.  If your gut is telling you that you – or a caregiver – should wake up your child and check them at 3am, because it’s in the best interests of your child, then do it.  (Now, there IS a time to let loose the reins a little, but that’s another topic…..)  There are some things you can do to make things easier for your babysitter:

• Have an alarm clock set to the designated time.  I’ve found it helpful to have everything ready ahead of time – meter, treatments, snacks.  No sense in running up and down the stairs at 3am.
• If the caregiver is going to be drawing the blood – as opposed to waking the child – let them know the best place to poke and make sure they practice ahead of time.  The middle of the night is not the best time to figure this out.
• Talk with your child about the process.  “When Maggie wakes you up in the middle of the night, please help her check your blood sugar.”  Sometimes just planting that thought makes things go smoother.

I meet parents all the time who check their child’s blood sugar nightly after years of being diagnosed with type 1 diabetes.  My heart goes out to you, because I completely understand why you have to do this.  Here are some ideas that may be new for you, or just different:

Snacks help prevent low blood sugar levels and provide energy between meals. Typical snacks contain 15 to 30 grams of carbohydrate. Below are some low-fat snack ideas to try.

Snacks containing 15 grams of carbohydrate:
1 medium apple or orange
18 small pretzel twists
2 popcorn cakes
1/2 small bagel with fat-free cream cheese
3 cups air popped or low-fat microwave popcorn
8 oz. or 1 carton light yogurt
4 to 5 vanilla wafers
5 to 6 saltine crackers
1 1/2 graham crackers
1/2 cup low-fat ice cream
2 Tbsp raisins
1/2 cup unsweetened applesauce
1/2 cup sugar-free pudding
1 fruit roll-up
1 fruit juice bar

Snacks with 30 grams of carbohydrate:
1 small bagel with fat-free cream cheese
1 oz baked tortilla chips with 1/4 cup salsa
1 low-fat granola bar
1 large banana or 2 pieces of fruit
4 oz individual fruit cup and 1 cup skim milk
1 cup Cheerios with 1/2 cup skim milk
1/4 cup dried fruit
2 caramel corn cakes
1 cereal bar
15 baked potato chips
14 animal crackers and 1/2 cup skim milk
2 fig cookies and 1 cup skim milk

• Encourage your child to eat fresh fruit rather than juice as a routine snack (unless blood sugar is low).
• Add sugar-free flavorings (such as sugar-free cocoa or milk flavorings) to milk, if needed.
• If your child is still hungry after the snack, offer water, popsicles made with diet pop or Kool-Aid, or carrot sticks or celery in a dish with cold water and ice cubes.
• If low blood sugars happen repeatedly at the same time of day, or if your child exercises for a long time, a snack may help prevent low blood sugar.
• Bedtime snacks are important for blood sugar control for children with type 1 diabetes. A snack that includes carbohydrate and protein helps to keep up your child’s blood sugar level through the night. A typical bedtime snack should include 15 grams of carbohydrate and 7 to 8 grams of protein. This amount can change based on your child’s age, blood sugar levels, and activity throughout the day.
• Children who have had an active day should have a bedtime snack no matter what their blood sugar level.

Examples of foods containing 15 grams of carbohydrate and 7 to 8 grams of protein include:
1 slice of bread plus 2 Tbsp peanut butter
1 6-inch tortilla plus 1/4 cup grated cheese
6 saltine crackers plus 1 string cheese
3 cups popcorn plus 1 oz of meat or 1 egg
12 small pretzels plus 2 Tbsp sunflower seeds
3/4 to 1 cup cereal plus 1/4 cup peanuts
5 vanilla wafers plus 1 cup milk*
8 oz of no-sugar-added yogurt*.
*Yogurt and milk provide about 15 grams of carbohydrate as well as protein.

It is good to choose a solid food at bedtime. Solid foods will churn around in the stomach before passing to the intestine where most food is absorbed. Milk or yogurt alone might pass quickly through the stomach, but milk and cereal or yogurt and crackers might pass through more slowly. Adjust carbohydrate amounts based on what the blood sugar is at bedtime. Here are some guidelines to follow:

At bedtime, if your child’s blood sugar is:

• 150-200 mg/dl (8.3-11.1mmol/L): Give your child 15 to 20 grams of carbohydrate and 7 to 8 grams of protein.
• 100-150 mg/dl (5.5-8.3 mmol/L): Give your child 25 to 30 grams of carbohydrate and 7 to 8 grams of protein.
• 100 mg/dl (5.5 mmol/L): Give your child 30 to 45 grams of carbohydrate and 7 to 8 grams of protein.

If you are familiar with Type 1 diabetes then you are familiar with ketones. If at least for the only reason that periodically you have needed to pee on a stick to see if you have them. But what are they really.

Ketones are the by-product of using protein as a main source of fuel for your body. Glucose is the main source of fuel for your body, it comes from foods such as sugar, carbohydrates, or fructose. In uncontrolled diabetes insulin cannot get glucose into your cells for fuel. This is from a lack of insulin or resistance toward insulin at the cellular level. When this happens your body starts to break down protein to use for fuel. During this process the body then creates an acid as a byproduct of breaking down protein. In small amounts occasionally you may not notice this. When uncontrolled diabetes and blood sugars are running high for long periods of time then the acid starts to build up in the blood causing ketones in your urine. This can eventually lead to coma and death without treatment and a myriad of other symptoms.

If you have ever had high ketones you know how awful you can feel. You get a headache, nausea, vomiting, and not really with it mentally. Treatment for ketones is insulin and fluids. Insulin controls blood sugars and the fluids to flush the ketones from your body If you have a hard time  keeping fluids down because of vomiting then you should see medical treatment. The act of vomiting alone can create more ketones as well as exercise. Treating ketones at home for a diabetic is difficult. Type 1 diabetes requires vigilance and drink plenty of fluids. and check you blood sugar and ketones at least every two hours. Until blood sugars and ketones are back to normal.  If you have not received a guide from your endocrinologist about a sick day guide then you should get one. It will spell out exactly how to treat your blood sugars and ketones when you are ill or your sugars are running to high. Type 1 diabetes can cause many issues and understanding what the underlying cause is to problems with diabetes, like ketones, will help you treat it better at home.