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?

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. 

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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. 

New Book Deals with the Issue of Parenting a Child with Special Needs

I am thrilled to announce that author and super-blogger, Jolene Philo, will soon be a guest on my blog to discuss her newly released book, Different Dream Parenting. Jolene's first child was diagnosed with a life-threatening birth defect only a few hours after birth. He was immediately flown to the University of Nebraska in Omaha for surgery. In her book, she shares her story, as well as those of others who have faced the life-altering whirlwind that takes place in the lives of families who discover their child has a disease or disorder. 

About Different Dream Parenting

If you are the parent of a child with special needs, you are aware of the daily challenges. There are special tasks in caring for your child and other unexpected circumstances that can arise. It is a labor of love with life-long rewards: the smiles, the hugs, and the milestones your child reaches.

Whether you are a caregiving veteran or new to the experience, as I am, Jolene's new book has some welcomed help to offer.

What Issues Are Addressed?

Jolene takes us from diagnosis and coping to preserving the family.  She shares helpful tips for the stressed out parent as well as advice for keeping your other children from feeling neglected. Jolene also addresses the spiritual needs of parents and how to work well needed devotional time into a hectic routine.

I was delighted to find many helpful resources and links for parents of children with various needs. Jolene has done her research and she shares them in Different Dream Parenting so they are readily available. I particularly appreciated the tips for helping deal with stress, as we tend to neglect our own needs while caring for a special-needs child. 

Different Dream Parenting has become my go-to handbook for valuable information. 

How can you be prepared for stays at the hospital? How do you prepare your child for life-changing news? Who can you turn to for help in caring for your child? How do you keep your child occupied during a long hospital stay? Finally, is it possible to keep your spirit nourished when you are too tired to think? Jolene has provided wonderful daily devotionals to keep your spiritual engine running when you don't feel you have the strength to continue.

Jolene does a marvelous job covering topics I hadn't even thought about while I was going through the transition period when my son was first diagnosed with juvenile diabetes. I highly recommend this book to all parents and caregivers of children with special needs. It answers questions you haven't asked yet.

I hope you'll join us at the beginning of December when Jolene will be a guest on my blog to discuss her new book. We will also be giving away copies of Different Dream Parenting to randomly selected commenters. You can purchase a copy now at http://www.dhp.org/Products/UB913.aspx to take advantage of a 10% discount off the retail price. Then, join in the discussion when Jolene stops by for a visit in December, ask questions, or share your story and useful tips.

I know I can't wait to glean from her experience and knowledge on many topics. How about you?

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. 

It always comes back to the apple

Steve Jobs has often been a man of controversy. Heated arguments have been fueled by his name, his methods, and his products.

I want to leave that behind and focus on Steve Jobs - the innovator. 

His creativity, never say never attitude, and his strong penchant  for cutting-edge technology made my life better.

The world lost a trailblazer last week when Steve Jobs was promoted to a higher position than CEO and co-founder of Apple. Who will fill his shoes?

The inventions sparked by Job's imagination have made it easier for me to function with my son's diabetes. Having an iPhone and iPod, I can download apps that assist in my son's care. 

How so?

There's the Google and Maps app I use to plan out our route for visits to the endocrinologist. If you remember my post about our first trip to the endocrinologist, you remember why this is a necessary tool. Sure, paper maps still exist, but does it point out one way streets or detours for construction? Does a map give you an ETA? No.  How about a compass app. when you get turned around? Then, there's the weather app that lets me know what type of weather to expect so I can time my departure appropriately. 

Additionally, I have apps that give me nutrition information. This is a handy tool when we are out to eat and need to know the carbs so we can calculate Sawyer's insulin dose. These apps include GoMeals, Lose It!, and Restaurants. These apps give me access to the most current information available. What's more, they were free. 

Also, there are many free games that keep my son entertained while waiting at the doctor's office or during the long 2 hour trip to his doctor appointment. I recall when he had to sit through his sister's two hour graduation ceremony. Sawyer also has been diagnosed with ADHD. The games on the iPod kept him entertained the entire time. This is a little bit of heaven for a stressed out, tired mom. Angry Birds, Pocket God, and Sonic have been wonderful entertainment.

There have been times when I needed information about juvenile diabetes while away from home. All I had to do was open my Safari browser and the information was at hand.

These are just the applications that I am aware of.  I'm sure there are many more. No longer do I feel I unprepared in unexpected situations. I don't have to pass on an invitation because I'm not sure how I will figure out Sawyer's carbs. Oh, by the way, there is also a calculator app that I use to figure out Sawyer's carb ratio and insulin dose. 

In addition, there is a notepad app where I can make notes of Sawyer's activity, food intake, and insulin dosages, while I am away from home. I can later transcribe this information into his journal.

Access to the information I need is at my fingertips. I have Steve Jobs to thank for this freedom. 

Thank you, Steve, for sharing your ideas with the world. 

Do you have a favorite app that has made raising a special needs child easier? If so, please share. I'd love to hear about it.

*(Blog Written on my MacBook Pro)*

One Small Step For Our Children

Many of you may remember my sad story about the twelve-year-old girl who was diagnosed with juvenile diabetes*. I thought, “If only this girl had been tested, maybe she would have been spared the complications from which she now suffers.”

photo courtesy of kaboodle.com

Moved to act, I wrote a letter to New York State Senator, Catharine Young, sharing the story of the young girl. I also shared the story of my seven-year-old son. Expressing concern for children that may be living with undetected diabetes, I suggested diabetes screening for school children. The test would be relatively inexpensive if test strips were used. 

Today I received a reply from Senator Young. In her letter, she shared with me that there is currently an Assembly bill that “would require a risk analysis and testing for diabetes for high risk youth, before entering 1st, 3rd, 7th, and 10th grades.”  The legislation is now before the Assembly Education Committee. 

photo courtesy of hertzfurniture.com

I did some research and found Assembly bill 1320 and read what it encompasses. The justification for the bill states, “Diabetes rates in New York State increased by more than 50% from 1994 to 2001. Most of this increase is in the form of Type 2 diabetes, which is related to obesity and lifestyle.”

The bill also states, “A recent Centers for Disease Control (CDC) study estimates that one in

three U.S. children born in 2000 will become diabetic in their lifetime unless this trend is reversed.”

  

While I’m glad to hear that the Senate is taking this epidemic seriously, I am concerned about a couple of things. 

How long before this bill is enacted? Here is the history of the bill to date:

LEGISLATIVE HISTORY:

2004 - A.9176 2005-2006 -  A.2167-A Referred to Education

2007/08 - A3826a - Amend and Recommit to education

2009/10 - A5701 - Referred to Education

This bill has been passed around since 2004. It’s time to stop playing politics with our children and get this done. Obviously, someone was smart enough to see diabetes as an increasing problem or they never would have written this bill. 

Another concern.

 This bill focuses quite a bit on Type 2 diabetes. Children will be singled out based on ethnicity and weight. If a child is in the African-American or Hispanic category, they are at greater risk for  diabetes so they will be more closely monitored than their peers. This is also true of children that are obese. 

photo courtesy of hubpages.com

My son does not meet any of this criteria. At the time of his diagnosis, he weighed 56 pounds. He is also white. While he has a small amount of Native American heritage, that does not show up in his appearance. Would he have been monitored based on the predetermined criteria? 

Perhaps if a family history was provided.

Oops, no history of juvenile diabetes on either side of his family. There is a history of Type 2, or adult onset diabetes, but would this have set off any warning bells?

Overall, I am happy that this bill may be enacted into law. 

I would ask everyone reading this to prayerfully consider supporting this law and contact your local Senator. 

A copy of Assembly bill AO1320 can be read here:

http://assembly.state.ny.us/leg/?default_fld=&bn=A01320&term=2011&Summary=Y&Actions=Y&Votes=Y&Memo=Y&Text=Y

photo courtesy of medheadlines.com

Diabetes can be controlled if it is caught in time. Children at high risk can get the help they need to avoid Type 2 diabetes. We can arm these children with information on healthy eating and exercise. Furthermore, children who may already have Juvenile diabetes, without showing any symptoms, could get treatment as soon as possible.

A list of Senators and contact information can be found here: http://www.nysenate.gov/senators

Officials don’t know what we are thinking if we don’t share our thoughts with them. 

photo courtesy of ammoland.com

“It is the input of New York’s citizens that brings about positive changes.” - Catharine M. Young, Senator, 57th District

*Blog Post I Heard a Sad Story the Other Day

King of the House

*photo courtesy of wii.ign.com*

Sawyer has been coping with juvenile diabetes pretty well; especially for a seven-year-old with ADHD. He's dealing better than a lot of adults would in a similar situation, myself included. 

In fact, just last week, Sawyer learned to give himself his own shot. There is a process involved, which includes counting his carbs, figuring out his carb-to-insulin ratio, then adding in a correction for his blood glucose if needed. I did all of that. He hasn't learned multiplication and division yet in the first grade -  a skill needed to figure his ratio and correction.

After the dose was calculated, I taught him to prime his needle and made sure the medicine was ready to go. He then dialed up his dose, uncapped his needle, and gave himself a shot in the thigh. 

Did I mention he is only seven-years-old? 

I found that pretty impressive. The little guy has to have four shots a day. Yikes! That's a lot of pokes. Think of your trip to the pediatrician for one of your children's vaccines. If you've had the same experience as I, you probably witnessed tears...lots of tears. I think Sawyer is pretty amazing and brave to give himself a poke with a needle.

*photo courtesy of 123rf.com*

Sawyer will have to manage his condition for the rest of his life. It's important that he gets involved in his regimen. What if nobody is there to help him? Life happens and he should be prepared and in charge of his treatment. This gives him some sense of control and empowerment over a disease that tries to control him. 

*photo courtesy of www2.nestle.com.my*

The site of injection determines the speed in which the insulin begins working. A shot in the abdomen will begin working the fastest. The arm is the second quickest site, then the thighs, and finally the rear. It is also important to rotate where an injection is given to prevent hardening under the skins surface. 

*photo courtesy of best-motivations-articles.com*

So, I guess this makes Sawyer the self-proclaimed "king of the house." 

He was crowned about a month in to his diagnosis. Everything revolved around Sawyer and his treatment. We were watching everything he ate, counting all the carbs - and I can tell you, some of them were not easy to locate - checking his blood sugars four to six times a day, (including a three a.m. check), and constant monitoring for hypoglycemic reactions. This must have made him feel pretty special because one day, while eating his lunch, he said rather indignantly, "Where is my fork?" 

I said, "Did I forget your fork? I'm sorry."

Sawyer said, "You have to give me a fork. I am the king of the house. I do have diabetes, you know."

I told him, "You are capable of getting your own fork. You know where we keep them."

*photo courtesy of yourfunnypics.com*

I imagine all that special treatment would make anybody feel like a king. While Sawyer is not the king of the house, he is the king of his diabetes.