Pros and Cons of the Continuous Glucose Monitor

CONTINUOUS GLUCOSE MONITOR

It took a long time, a REALLY long time, for our insurance to cover the Continuous Glucose Monitor (CGM) for Sawyer. 

We've had it now for two months, and here are my thoughts on it so far.

Pros

* You can track blood sugar trends throughout the day.

* There are alarms that can be set for various situations, such as extreme lows, highs, or dropping fast.

* During sports, Sawyer could see his blood sugar and trends at a glance.

* Finger pricks only twice a day.

* Sensor change only once a week.

Cons

* It had to be calibrated twice a day. Failure to do so resulted in false readings.

*The sensor and transmitter came off during swimming and other activities.

* The sensor made the skin of his epidermis and dermis itch the entire week he wore it. 

* The alarms go off a lot. Sawyer silenced them because he didn't like the attention in class. Even when we changed the settings to only two alarms, he would set them on vibrate to avoid embarrassment.

* After one of the sensor changes, the monitor stopped receiving readings after one day. 

*Removing the transmitter from the sensor was very difficult.

*We received error messages of not being able to receive transmissions for half an hour.

*We received messages of the transmitter not working and rebooting, which would take two hours to warm-up.

*The cost. (When a sensor or transmitter fails, it's not cost effective to change it until the following week, leaving one without readings until that time.)

Sawyer is currently at camp. The meter wasn't working and it wasn't cost effective to change out the sensor mid-week.

It would have been nice to have the CGM for camp to monitor his BG during all the activity in which he'll be participating.

The CGM is a HUGE advancement in diabetes self management. Depending on the brand you get, the results will vary. 

For us, the monitor worked well during school sports season. For his field trip, it was not always accurate. And for a fun birthday party with other very active teenage boys, it was a flop.

Have you tried a CGM? 

Are you planning to in the future?

What were your results?

Over 3,000 walkers showed their support at the annual JDRF One Walk in Buffalo
(PHOTO CREDIT WIVB NEWS)

WALKING FOR A CURE

JDRF ONE WALK

My family participated in the JDRF One Walk on Sunday for the first time. There was a great turnout of walkers, along with supporters and sponsors of those who would walk. 

I've never been involved in an organized event of this size. 
It was a great way to connect with other parents of children with Type One Diabetes (T1D). 
It was also a great way for children with T1D to have fun while feeling loved and supported by the community.

The walk was held at Delaware Park in Buffalo on June 10. This was my first time visiting this beautiful park. The atmosphere was family friendly. 

After the event, all walkers were welcome to visit the Buffalo Zoo at no admission cost. (More love and support from the community here 💙)

Our team raised almost $6,000 of the region's total donations of 
$642,946!!

Way to go team!!

That's our team!!! Way to go!!

It was a well organized event, all coordinated by volunteers.

Nothing like the heart of a volunteer. 💙

JDRF is the leading global organization funding type 1 diabetes (T1D) research, according to Guidestar.org. The mission of JDRF is to accelerate life-changing breakthroughs to cure, prevent, and treat T1D and its complications. 

JDRF seeks to turn Type One into Type None.

Cutting the ribbon to kick off the One Walk.
Photo Credit WIVB News

" Innovations driven by JDRF, such as artificial pancreas systems, treatments for T1D complications, encapsulated beta cells, and prevention therapies are beginning to advance beyond the lab. These advances have the potential to transform the lives of people with T1D and ultimately bring about a world without T1D" (https://www.guidestar.org/profile/23-1907729).

I hope to see the development and world wide distribution of the artificial pancreas for my son and other brave people struggling with the daily balancing act that is T1D.

That's my dream.

That's why we walk.

Championing for those living with T1D

My son and I want to thank our generous sponsors and all of
those who donated to the JDRF One Walk 💗

More information on JDRF  (Juvenile Diabetes Research Foundation) and the annual One Walk can be found on their Web site at WALK.JDRF.ORG

More Resources: http://www.jdrf.org

http://www.diabetes.org/diabetes-basics/type-1/?loc=db-slabnav

To Pump or not to Pump

Making the choice to use an insulin pump is a personal one. There are a lot of factors involved in deciding if and when a pump will work for your child.

For me, the choice to wait was due large in part to my son's impulsive nature. I was concerned he would treat the pump like a video game and press buttons that could deliver insulin when it wasn't needed.

I didn't know there were pumps with safeguards in place. The one we chose has a three button system to turn it on. It's a requirement of the FDA, a good one. 

After 5 years with type 1 diabetes, we made the call to get the process started. 

First, the doctor gave us brochures to look over and pick the pump that we wanted. Since my son is now twelve, I included him in that process. He is the one that has to acclimate to using it and I wanted him to select a pump that he'd be comfortable with. There are a few out there, and my son's doctor told us it was our choice. 

Insurance companies generally want to see blood sugar logs. Ours wanted to see 2 months worth. Some want three. We keep logs of all his sugars and insulin doses, so fortunately we were prepared. 

bookcoverimgs.com

The process went quickly. Within a few weeks, my son was connected. What we didn't expect was the dramatic change in his blood sugars.

He has adapted quickly to the pump...much more quickly than I could have imagined.  It clips to his belt or he tucks it inside his pocket. Every 2-3 days, we change the cartridge and the infusion site. 

reviewsmemo.com

I expect to see a lower A1C at his next check-up. With that, a lowered risk of diabetic side effects.

The decision of whether to pump or not to pump is an individual choice. It was definitely one that we took time to consider before making the transition. 

We're optimistic, so far, that the results will be worth it.

Your Child Depends On You!!

Being a kid is tough enough without the complications of a chronic disease. The joy of a normal childhood is stolen from them...unless their parents take an active role in giving them the best care possible. 

I don't want to cast my son in the 'sick role' of society. My desire is for him to have as normal of a life as possible. This isn't always an easy task.

Shots, blood sugar checks 4-6 times a day, hypoglycemia, constant blood sugar monitoring during extraneous activities, keeping a daily log book of blood sugar levels, carbs and insulin dosages at every meal as well as quarterly endocrinologist visits are all a normal part of a diabetics life. These measures are small in comparison to the huge benefits received from following these steps - a long and healthy life.

Not doing these things for your child is equivalent to signing their death certificate. 

A bit blunt? Sure. But it's true.

I couldn't imagine any parent would neglect the duties associated with the care of their child with diabetes. It was incomprehensible to me...until the other day.

I had a conversation with a school health professional this week. We were discussing the advances in diabetic care with medical devices like the insulin pump and new research which could lead to a cure within five years time. She told me that in years past there may have been one child in the district with diabetes. Now, there are four alone in the one elementary school where she works. Diabetes is predicted to affect one in four people within the next 10 years. This is evidence of those statistics.

The next part of our conversation was disturbing to me as well as sad. She said the parents of the diabetics she is working with now are doing a great job with the children. But just a couple years ago, there was a young boy whose parents gave him no treatment at home. The only diabetic care he received was during his time at school. 

When he was in fourth grade, he passed away.

I was stunned. How could a parent neglect their child's diabetic care or any care for a chronic disease? This is blatant child abuse in my eyes. His death could have been avoided with monitoring and proper health care.

 From my experiences, I realize that insurance companies make it difficult for diabetics to afford their supplies. There is help possible through the American Diabetes Association and the Juvenile Diabetes Research Foundation. 

But flagrant neglect is unacceptable. 

If you or someone you know has a child with diabetes or the symptoms of diabetes, including but not limited to: 

Loosing weight without trying

Weakness and fatigue

Frequent trips to the bathroom

Unquenchable thirst

Tingling or numbness in your hands, legs or feet

Blurred vision

Dry, itchy skin

Frequent infections or cuts and bruises that take a long time to heal

Call your doctor. If you feel there is something wrong, advocate for your child. My doctor told me my son had a virus, but I knew it was more serious than that. Demand blood work be done. 

Also, monitor your child's blood glucose at every meal and before bedtime. Keep in contact with your doctor when sugar levels change, when they are ill or when they are vomiting. 

It's not difficult to do these small steps to give your child a great life.

Don't they deserve the chance at a normal life? 

Don't let them down. 

Halloween Treats can be Tricky

*photo courtesy of masterworks.wordpress.com*

This was our first Halloween since "the diagnosis."

 All the chocolates, licorice, and teeth-pulling treats are  magnified during this time of year.

So how should we handle it?

I spoke with a young lady yesterday who has been diabetic since she was five-years old. She shared with me that when she was a kid, there was no trick-or-treating for her, and if she did, the candy had to be given sparingly. She took note that her friends didn't have to live like that - watching how much candy they ate and taking shots - so, why did she?

It must feel like some sort of punishment to a little kid, being left out of holiday festivities. Think of all the food-centered holidays: Thanksgiving, Christmas, Valentine's Day, Fourth-of-July, Labor Day, Easter, and the dentist dreaded Halloween.

It's definitely calorie-free to dress up in costumes, and certainly healthy to walk around the neighborhood on a brisk evening collecting goodies. It's the eating of the hard-earned treats that becomes, well, tricky.

*photo courtesy of myfrugaladventures.com*

I figure that everything in moderation is okay. Well, almost everything. Rather than going door to door this year and having to moderate all those unnecessary sweets, we took Sawyer to our local mall for trick-or-treat. They were sponsoring a two hour event for kids, which included a costume contest and trick-or-treating at the stores. This gave Sawyer the experience without the excess. Later that night, we had a candy hunt for him, sort of like an Easter egg hunt. He had lots of fun with that. We also let him dress up and go from door to door within our home, knocking at each one and saying "Trick or Treat?" as each character opened their door.We treated him with some goodies and he didn't pull any tricks.  I smiled when he squealed with delight and laughter as he said, "This is fun!" 

The candy is put out of reach and we allow him a piece or two with his meal or as a snack. The carbs are counted and he is given insulin for the treats. 

 We will make it through and recover in time for the one month Thanksgiving/Christmas gluttony that occurs each year. Yikes!

A little candy is okay. Moderation is key. This isn't a lifestyle that just diabetics should live by. 

After all, we all should moderate our intake of sweets. 

I'm sorry, Sawyer, but you just can't sit and eat that entire bag of candy in one or two sittings. Nobody should. So, I hope he learns that this isn't just a diabetic thing, but a healthy lifestyle thing for everyone. 

I wouldn't want him to feel left out.

His good attitude about all of this tells me he doesn't feel like he's missing out on a thing.