9876051_sMy youngest child, a non-diabetic child, is allowed to stay home at a younger age than my older diabetic child.  She does not have a chronic illness to attend to while alone.  But my type 1 child was not allowed that privilege until after he was 13 years old.  Call it helicopter parenting, but he was not quite ready to attend to his low blood sugars without a responsible adult around.  My main concern was that he needed to have very good awareness of his low blood sugars and how to treat them properly.  He has always been able to notice a change in his blood sugars, but being able to treat his low blood sugars is a whole different animal.  Once I started to feel that he had a solid grasp on this I began to let him stay home alone for short periods of time.  I would run an errand, or stop by the grocery store.  As I began to be more confident, my husband and I would venture out to the local restaurant for dinner.  Now that he has earned our trust to stay home during the day without adults, he calls or texts me with issues with his blood sugar.  He is now able to treat and care for his blood sugars for short periods of time.  In turn this will eventually help him grow into an adult.

Each child is different. Some questions to help you determine when he or she can stay home are:

1. How mature is your child?

2. How does he or she recognize low blood sugars?

3. Is your child able to treat low blood sugars and follow up with a snack?

4. How far away will you be from the home?

Once you are satisfied with these key points, start with short trips from home.  You should have a successful transition to leaving your child at home while feeling comfortable about the blood sugars.

Type 1 Diabetes and Staying Home Alone: When is the Right Time?


Type 1 Diabetes Fundraising – Why Should We Do It?

The Fundraising

You have heard of the Diabetes walk, Ride the cure and plain donations for fundraising. Each aspect of research for diabetes is supported through fundraising and donations. The major body of fundraising for type 1 diabetes comes from JDRF, although American Diabetes Association  (ADA) also has fundraising activities. Although the ADA does have fundraising it is to Diabetes as a whole, Type 2 and type 1. SO lets focus on what JDRF actually spends the money you raise on

According to the JDRF website (http://jdrf.org/about-jdrf/fact-sheets/research-funding-facts/) this is what the money you raise goes too!

  • “JDRF is the leading global organization funding T1D research with more than 100 U.S. locations and 6 international affiliates.
  • Since inception, JDRF has contributed over $1.9B to T1D research and including $98M in 2014.
  • JDRF is currently funding 45 human clinical trials of potential T1D therapies.
  • Approximately 80% of JDRF expenditures directly support T1D research and research-related education”

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This is amazing. One day we will be able to cure diabetes and every year has so many new medical discoveries to allow our children to live as a normal child. We are blessed to have such a foundation advocating and working to cure our kids!

 

Keep up the fundraising and hopefully our children will not have to live with this disease life long!

To donate

 

 http://jdrf.org/get-involved/ways-to-donate/

 


All Work3a118a835fd0d6d253f49acc9ed5697a and No Play

How is life going?  Have you found yourself recently trying to do all diabetes all day and night?  Has your child been ill, leaving no room for anything (even a shower)? Or are you just trying to be the best parent/caregiver you know how and that means an A1c less than 7!images

This can mean living with too much stress and creating a more clinical environment for your type 1 child.  What has your family done recently that has been fun and not structured around diabetes (at least to the best of your parental abilities)?  Or structured around diabetes as a learning experience or game?

Here are some Ideas to try for a week

  • Diabetes is never fun, but sometimes it’s good to change things up a bit.  For example, only do the basic things for meals like carbohydrate counting and giving insulin.

 

  • The whole family checks their blood sugar – new lancets!

 

  • Everyone does a site or CGM insertion

 

  • Different treatment, see post on treatments

 

  • Low-key approach to lows and highs, be calm

 

  •  The other parent takes charge: spa day!images

All Work and No Play Can Make Diabetes Unbearable


The “Weekend Away”

The Weekend

Here it is our first real out-of-state vacation without the kids.  My mother-in-law took them for us while we scooted off to Seattle, WA for five days.  This would mark our first “BIG” trip without the kids.  We have had others: to the mountains for a night or they have scooted over to friends’ houses overnight.  But to go out-of-state without me being in complete control of Quincy’s diabetes for five days (and he was not at camp)?  My feelings: excited, scared, curious to see if I could do it and not go psycho crazy and need to control everything! So I plotted my obsessive need to control all the details.spaceneddle

The details

Five days at grandma’s house.  She had a mini-trips planned with the kids.  This meant I needed to plan and discuss what is expected for Quincy when you are more than 30 minutes from home, staying in a hotel, and then going on a fabulous train ride (which was way more exciting for my kids than going to some silly city!).  I, of course, have the “travel overnight” and not being at a hotel down to a “T” with skiing.  But I actually had to think my steps through and decided what a non-routine caregiver would need to do for a fun-filled grandparent weekend.

The steps

We do use our book for our son.  Now that he is a young teenager he does quite a bit on his own with lots of supervision.  He needs his travel bag and then several smaller bags for the train ride.  The travel bag consists of several pump site changes, insertion device (it is never fun to leave this at home), insulin, Lantus (just in case the pump fails all together), syringes, test strips, glucagon (in every pocket imaginable), alcohol wipes, sugar, and an extra glucometer.  That is the big bag.  Now experience has taught my family that taking one to two extra glucometers is a must, and keeping things in several places is a must.  So my mother-in-law had a baggie with a glucometer and sugar for her purse, and my son took the site change (only one) in his diabetic bag on the train. Then came special training about keeping all diabetic supplies from being too hot or too cold in the event they may not function right.

The result

We had an exceptional time in Seattle.  The kids had fun with my mother-in-law.  Mobile phone communication was mostly about our trips and very little about blood sugars until the last day and that will be the next post.  My mother-in-law utilized the book when she needed to and it kept everything running smoothly.  It’s amazing how a full scope of knowledge helps care for your child! Everything she needed to take care of Quincy was right in the our book, “Type 1 Diabetes and Babysitting: A Parent’s Toolkit”.


Diabetes educators: Who are they and what do they do?imgres

Likely every type 1 child and their families have seen an educator: at the hospital, for insulin management, to start on a pump, or for school paperwork.  But what do you really know about your diabetes educator and what are their backgrounds?

The Definition

According to the American Association of Diabetes Educators (AADE):

A certified diabetes educator (CDE) is a healthcare professional for diabetes or people at risk for diabetes with behavioral goals to achieve better clinical outcomes.  So what exactly does that mean? The idea is an educator helps a child with diabetes (or family members, in the case of children) with eating habits, exercise habits, insulin dosing, sick day management, and basically the day-to-day activities for a child that affects blood sugars and A1c levels.  A diabetes educator’s background is varied.  He or she may have a background as a registered nurse, a nutritionist, a pharmacist, a physician, or a mental health professional, to name a few.  He or she must take a certification exam to become an educator.  The basis for their education revolves around what the AADE calls the 7 self-care behaviors:  healthy eating, being active, monitoring and taking medications, problem-solving, healthy coping, and reducing risks.

Who Pays to See a CDE

Typically a person with diabetes can see an educator more often than the endocrinologist; however, this is based on insurance coverage.  Insurance coverage for an educator will differ between plans (so check your insurance plan out).  Usually you need a referral from the endocrinologist.  After the referral is made you can typically see the educator more often than the endocrinologist depending on the reason for seeing the educator.

How do you use your educator in your community?  Is he or she helpful or is the endocrinologist you see more helpful?  Have you seen your educator lately?

Here is the link to the American Association of Diabetes Educators with a full-page on what an educator is:

http://www.diabeteseducator.org/export/sites/aade/_resources/pdf/Definition_Diabetes_Educator.pdf

What Exactly Does a Certified Diabetes Educator Do?


Last Night’s Phone Call and Other Dealings of a T1D Parent

Last night, around 10:30 pm, my cell phone rang.  I was actually holding the phone, about to power it down with 7% battery left, and a number I didn’t recognize popped up on the screen.  Who’s calling me at 10:30?  As a parent of a child with type 1 diabetes, you learn to just answer the phone.  And then came the words that sent my heart racing, “Hi Dayna, this is Michelle from diabetes camp.”

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Now Hannah’s been going to camp for 6 years, a remote place in the mountains of Colorado, where cell phones don’t work, there is no contact with your child for a week, and THEY NEVER CALL.  That’s the beauty of diabetes camp – your child is surrounded by med staff and counselors and doctors and other adults with T1D.  By the time you “drop your kid off” you have filled out 20 forms three months ago, had your endocrinologist sign off that your kid can go, and filled out 10 more forms in the last week.  As you arrive, you shuttle from station to station: nurses station to check for fever, non-diabetes med station, pump settings station, CGM station, pump supply station… So you feel darned good about leaving your kid in capable hands.

Hannah was fine, Michelle assured me, but her insulin pump was not.  The funny thing was she kept telling me it had a “motor error” and I kept thinking she was saying it had a “murder error”.  Either way, the pump was dead, the $4,000 device that keeps my kid alive.  Michelle, as it turns out, not only has T1D herself, but is a rep for Medtronic, the pump’s manufacturer.  She happened to have a spare pump that Hannah can use for the next few days, and gave me instructions to call Medtronic and have a replacement overnighted.  I assumed she wanted me to call in the morning, but no, Medtronic has a 24-hour 800 number and it is manned by Very Helpful People.  Hannah’s replacement pump will arrive the day she gets back, and the best part…it’s under warranty.

I started thinking about how the phone takes on a whole different sense of urgency when you’re a T1D parent.  When Hannah was in elementary school, the nurse would call me at least 3 times a week when Hannah’s readings were either very high or very low.  For years, my cordless phone and my cell phone were always within reach: in the bathroom, in the garden, while I was vacuuming….and at the gym, my cell phone was at the base of my spin bike so I could see it when it lit up.

Then there was the phone call from the endocrinologist with the results of her yearly screening for Celiac’s disease.  We never had that follow-up call until it came back positive.  That was a rough day.

All in all, I am more than grateful that my daughter is surrounded by doctors, school nurses, pharmaceutical reps, certified diabetes educators, endos….so many people working to make sure her life is good and healthy and practically normal.  And I promise to always answer the phone.


Type 1 Diabetes and Growth Spurts

Growing children seem to eat parents out of house and home.  There is never enough food for them!  For example, my type 1 13-year-old is eating me out of house and home!  And the result is a three-inch growth spurt about every three months.  The problem (beyond the obvious sugar control!) is that he wants to eat all day long.  Waiting until the next meal might as well be giving him a “death sentence”.  The recommendations we received was to eat every two hours.  He is able to have an entire meal every two hours.  I thought what a great compromise!  But he still wants to graze all day long like a cow in pasture!  So I try to help him eat good food and sometimes fun foods to encourage eating well.

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So why is it a big deal for him to eat constantly?  It has to do with insulin, whether via shot or pump.  Eating more often requires insulin.  Each time he takes insulin he is stacking it on the last dose and essentially giving himself mega doses of insulin, setting himself up for a low.  Rapid insulin like Novolog or Humalog have about a 3-4 hour active time in the body. The insulin works quickly but does not leave the body quickly.  It basically means we can expect many and frequent lows.  Eating every two hours helps with this but does not necessarily eliminate stacking of insulin.  But for us it works.

Growing and grazing.  Eat, beef up and grow taller.  Type 1’s can navigate this easily without negative consequences.  Go forth and chow down!

Portrait of a boy holding fruits

Growing and Grazing


The Barbara Davis Center for Diabetes

The Barbara Davis Center in Denver, Colorado has been a center for all people with diabetes to receive care. The center began as a way to help underprivileged children with type 1 diabetes to receive care and supplies. Over the years the center has developed and written several books and added programs like classes for grandparents, for families of persons with diabetes.

One popular book that you may be familiar with is Understanding Diabetes by H. Peter Chase, otherwise known as the Pink Panther book.imagesThis one of the books in the Bag of Hope that many children with type 1 diabetes receive when they are newly diagnosed. What a great book it is!  The Pink Panther book is an essential reference to understanding all things diabetes.

The Barbara Davis Center mission statement is:

Our mission is to provide state-of the-art care to children and adults with type 1 diabetes and to teach our patients how to prevent or delay complications. Our research is devoted to finding prevention, cure, and most effective treatment of diabetes and associated disorders.

Recently the center has combined with the University of Colorado Health Science Center.  They still provide easy access for care and the variety of programs the center originally created.  The Barbara Davis Center is still acting as a funding raising entity. You can find out more at:  Barbara Davis Center.

 


Confusion and Type 1 Diabetes

12595846_sOne of the risks of type 1 diabetes is low blood sugars, and with children it can be difficult to determine a low blood sugar.  One of the late symptoms of hypoglycemia can be confusion.  Confusion can appear as gibberish talking or nonsensical sentences.  Confusion can then lead into unconsciousness.

How does a parent handle confusion?  It is always good to not get this far and look for other symptoms first in the child: shaky, extreme hunger, sweaty, dizzy, and/or pale.  But in the event that confusion takes over:

1. If the child is able to drink, have them drink fluids.  You can also rub cake gel on the child’s gums to quickly absorb.

2. If they cannot drink fluids, then get out your glucagon.  Know your child’s dose, and administer this dose.

3. If your child is becoming unconscious, lay your child on his or her side and call 911 after the glucagon dose has been given.

After all is said and done, review what has occurred so that you may take steps to resolve this does not occur again.


Childhood Diabetes: The Halloween Candy Killer

Halloween is right around the corner and it is not necessarily the best food holiday for a type 1 diabetic child. Sugar in itself is not bad but the overindulgence of candy is. At no other time of year can a person knock on a door and fill a pillowcase full of candy. I am not so sure this is how most diabetic families want their child to eat – a buffet of sweets!

I know the Type 1 Kids are allowed a “normal” eating habit. But somehow overindulging on candy seems wrong in so many ways. I think this is true for all children. Yet Halloween can be fun in so many memorable ways. Going around from house to house with friends and dressing up in fun or scary costumes will last a lifetime. Quincy was diagnosed young enough that I began to focus on all the fun, fabulous aspects of Halloween and not necessarily the candy. We always had the fun of Halloween, whether it be a party, trick or treating, or decorating the house.

In my opinion our best years occurred when we made Quincy’s costumes, decorated around the house, had a pumpkin carving contest, or were growing enormous pumpkins. Some of the fun has been the costumes. Our favorite costume year was Harry Potter. (Or at least that was mine.) I think he would say his politician year was his favorite. There was the year of the orange Lego and the computer monitor (I love empty boxes – they make so many things!). We still trick or treated and brought the treasure trove of candy home. After the candy inspection, I made both kids choose 5 pieces they really loved and wanted to eat (usually it included the one or two full-sized bars we would have!) and we saved them for a treat with a meal. Then I went through the candy and kept pixie sticks, Smarties and the like for low blood sugars. The rest of the candy never went to waste. We would take it into work or ship it off to the military oversees while they were at war. For us this has taken the emphasis off of candy at Halloween and focused on all of the other fabulous aspects of Halloween.

So far this has worked in our house. Now that Quincy is a teenager, he is more interested in handing out the candy and seeing what the little kids are dressed like and he is a numbers guy…so keeping track of how many Halloween kids we have is his top priority! It has been fun seeing how he is growing into a man with control over how he handles himself. Dealing with Halloween in this way has helped him grow and become accountable with his diabetes.

I do know other families do the candy holiday differently than we have. And my take on it is not for everyone. I love that we all have options on how we can handle candy at Halloween with our type 1 children. So how do you handle Halloween as a type 1 family? Do you still get dressed up and make it fun? Do you allow the treasures of candy to linger around the house? I know everyone participates in Halloween differently. If the candy stash is the treat you let your kids have visit the carbohydrate count at JDRF website http://neny.jdrf.org/wp-content/uploads/sites/36/2013/09/candy-carb-counts.pdf

Have a Happy Halloween!