Category Archives: children with type 1 diabetes

The Transition Year Troubles

Last week it was  rough being a mother of a young man with diabetes.  My son wasn’t in DKA or anything as horrible as that.  He was tripping up in the world of paperwork, bureaucracy and diabetes care.

Two years ago he decided that he was old enough to handle his diabetes care, appointments and schooling on his own. He chose to move to live with his father and take over the responsibility on all of those fronts.  I was forced to stand on the sidelines and offer advice now and again when asked.

I was also left to order supplies for his pump on a semi-regular basis and this is where the trouble began…

I had placed an order for his infusion sets and cartridges.  On Tuesday I received a message on my phone.  It stated that coverage for my son’s supplies had been refused.  I was to either pay the almost $800 bill immediately or return all supplies.

What the heck? My son was under 25 with no insurance.  The provincial pump program was supposed to cover him. Had he fallen through the cracks? Did someone forget to do his paperwork?

I immediately began making calls and sending out emails.  I was sent a copy of the forms that should have been completed for him.  I called the woman at the pump company back.   Slowly the truth began to emerge and it wasn’t pretty…

The pump company hadn’t received new paperwork for my son regarding provincial pump coverage since 2014.

His diabetes center had only seen him once per year but the provincial policy requires him to see someone three times per year.  He had missed most of his appointments.  They had warned him that doing so would result in lost coverage.  He never paid attention.

His diabetes center was for pediatric care and they believed that he had been transferred to an adult center.  They suggested that I contact his former doctor (whom my son felt was still handling his care).

I called his doctor.  I was desperate for some sort of help both in getting my son to realize how important his attendance at appointments were and finding coverage for his pump supplies.

His doctor would not take my call but did say that he was continuing to care for my son.  Because my son is 18, his doctor felt that it was up to him to fix the mess that he created.  Fair point.  I passed the message along.  My son made the call.

It is a new week.  A glass or two of wine helped me to decompress.  My son is hopefully beginning to understand that while Mom is always there to help, being “of age” means that he has to handle things.

He has a call into his doctor to set up an appointment and chat about what he can do next.  His doctor is willing to help him get things straightened out (him not Mom) . He has booked an appointment with a diabetes clinic closer to his home to ensure that he can make the appointment.

These sound like small things.  In our world they are massive but we will find out way through…and at least there is still wine.

wine

 

 

Saddle Sores

 

My sons came to visit for a weekend over the Christmas holidays.  The visit was short but very much appreciated. It took a minute or two to get back into the hang of having diabetes in our house.  Sadly however, we quickly fell into the routine of…

“Did you test before eating that?”

“How much did you bolus?”

“How many carbs do you think are in those candies?”

My children are now young adults and while I always said that I would test my youngest son any time he was in my house, I also try to respect his privacy.  This means that when he is here, I ask him ahead of time if he wants me to test him at night.  The answer is always the same…YES!

This time around I thought of my mom as I struggled to test at night.  My mom had taken my children at certain times when they were growing up.  As long as I gave her carb counts and a testing schedule, she was good to go!  After the fact she would regale me with tales of sweat trying to get blood out of my son’s fingers at 3am.

Now it was my turn.  The meter had changed.  We were finally getting around to trying out his new Dario.  The pump was one that I had never used except during vacations.  I was a newbie…and it showed!

I struggled to get blood.  The Dario has no back light so it was a challenge to see if the blood was actually hitting the right part of the test strip.  I had the strip in backwards. I still didn’t have enough blood.  And so the fight continued.  My son woke up more than once during these “helpful” nighttime sessions.

I had to figure out how to correct with the “new” pump.  I can correct on a Cozmo in my sleep.  This pump is not a Cozmo.  After I was shown by a sleepy young man how to bolus a correction it made sense but as I was scrolling through the pump screens at 4am, there were some not nice words being said!

I don’t know if I was a lot of help to my son.  I don’t know if he got a break but for three days there was someone else to bounce numbers off of.  For three days there was someone else to be up during the night.  I know he appreciated it but being back in the diabetes saddle definitely gets a bit more challenging with time!

Test Strips…Its a Love-Hate Relationship

You can find test strips anywhere and everywhere.

I have found them in the stove and on the ground.

I have had people send me pictures of test strips in their coffee.

I have heard of people finding them in their refrigerators.  They are amazing little creatures that many of us swear are actually alive with the ability to move.  We put them in the garbage but somehow they escape!

When we live with diabetes all of the time, they are the bane of our existence.  They are a trail of breadcrumbs that may lead us to a loved one.01741ce750817f0bb842a77d37b600d36d278409fb

When the person with diabetes moves away, they are little feathers that remind us of our loved one and become sweet reminders. ..Well for me anyway. I seriously can’t throw them out. There is one in my car.  I had recently cleaned my car and rid myself of all test strips—and then my son came to visit.  There is now a new strip in my car.

There are always strips left in his room.IMG_0002.JPG (2)

I found one in our truck the other day.  I am not sure how it got there since the truck had been thoroughly cleaned more than once since he last rode in it.

The coolest test strips are the random ones you find that don’t belong to your loved one but are just like his/her’s and you feel a kinship to the person who dropped it.01adec7d2ccf29c15c14dd07e649cc1cc17abe5be1

We love test strips for the information that they readily provide.

We hate test strips for the ability to move on their own.

We love test strips for the little piece of someone else that they leave behind each time we spy them.

Or maybe its just me :)

 

Looks Can Be Deceiving

For the past few weeks, I have been going through old photos for a variety of reasons. I came across this picture.  My young son looks so sweet and innocent.
 
You would think such a picture would evoke the “ahhhs” of a mother right? Wrong! I know the stories behind this precious image. I remember the many faces of this child during those long car rides that were less than sweet. 
 
liam asleep july 2003
It was the summer of 2003 and my mother, my sons, and I were driving across Canada to see friends and spend time with family. It truly was an amazing trip but we also had diabetes along for the ride and so the challenges were a little more. 
 
While driving for 8+ hours, I would read Harry Potter to my oldest son when my mom was behind the wheel. It killed time and seemed like a great idea. A four-year old who was high did not share those feelings.  At one point, that sweet little boy you see in the back seat, took a Harry Potter book and flung it across the car leaving a mark on my window.  We were done reading with him in a car for a bit.
 
Why was this child high? Well, it could have been the insulin that got cooked in the cooler in the trunk of the car.  It may have been the insulin pen that quit working but Mom did not realize it right away. It could have been the long hours in a car and not getting quite the right mix of long acting insulin to balance the drive. The reasons were plenty but the results were flying books and a need to pee at the most inopportune times.
 
He demanded that we pull over while speeding along in rush-hour traffic on a Vancouver freeway.  This resulted in the creative use of spare coffee cups and extreme gratitude that he was a boy.
 
Being high when traveling also meant that he demanded that we not proceed flowing  the pilot car despite being stuck in sweltering heat on an Ontario highway for hours.  We had been held up in the same spot for literally over an hour and he had not needed to use the washroom during that time but the second the truck came and allowed us to proceed, my sweet little angel began “the pee dance” and was adamant that we had to pull back over NOW!
 
When asked if I would do that trip again, my answer was always the same…in a heart beat. I didn’t mind having a 4 and 8-year old in the car with me for hours…most of the time.  We stopped and enjoyed parks to break up the days.  We met wonderful people and got a chance to see the Canadian landscape up close.  And we have memories….some very interesting memories!

Carb Counting King

Thank you to everyone who offered kind words and support after my post the other day.  The day proceeded to get a little worse but in a way that had nothing to do with diabetes and managed to bring things into perspective for both of us.  Each day will bring new challenges and as a parent, I have to work at letting go and saying just enough without making him feel as defeated as he did on Wednesday.
Not all days are that dark or frustrating however.  Over the past week we have had a new competition of sorts going on.  When my son and I eat together, he will usually wait for me to give him the carb count for his meal.  He is more than capable of doing this on his own and does a decent job when he is away from me, but when we eat together he enjoys the break…or so I thought! Now I think I am just a source of amusement for him.
I came to this realization the other day.  I analyzed his meal.  I totalled carbs, subtracted fiber, guesstimated weights, and after a number of minutes came up with a total.  He then said “I could have told you that without all of that work.”  I laughed at him and said “yeah right!” and so the battle lines were drawn.
He swore that while I added, subtracted and multiplied, he just “knew” what he needed to bolus.  As the competition began, I would no longer say the carb counts out loud (which I do both to help him learn and to bounce ideas off of him).  I quietly would get my total and then ask him for his.
The first time we did this I grinned as I asked him his total. It was a large meal and there was no way to just look and know.  He replied “129″.  My jaw dropped as that was the exact calculation that I had arrived at.  Darn, maybe he was onto something!
We did this a few more times–smoke rising from my ears as I did the math, and the calm coolness of Mr. “I just know”.  He was usually within 5g of carbohydrates.  I had taught him well or he eats the same on a regular basis but these meals were not his usual fair.  I was impressed.  His super carb counting skills came to a crash last night however.  I asked him his guess while knowing the answer.  He came up over 100 carbs too high!
I told him that he had just overdosed himself. Mom wins! He just shrugged in his usual manner and vowed to win the next round.  We may have our downs but strange diabetes games like this bring smiles to both of us and make me feel a whole lot better because I see that he really is learning.  crown

Lucky Thirteen

March 17, 2000  is a date I will never forget. Its the day that diabetes stormed into our lives. Its the day we realized the lifesaving properties of insulin.  Its the day that our world was turned on its ear and would never be the same. 

That was thirteen years ago now. A lot has changed.  My son is now 15 and not 2.  He knows no other life beyond insulin pumps, infusion sets, glucose tablets and blood glucose testing.  It is a part of him.  He ignores it as much as you can with a  tube sticking out of your body and lancing your finger in search of blood multiple times during a day. 

He is now taller than me and weighs a lot more than the 11 kilograms he was at diagnosis.  He lifts weights rather than sippy cups. He prefers Duck Dynasty and Gold Rush to Land Before Time.  He continues to take life in stride. 

A lot has changed for me in thirteen years as well.  My boys are now young men.  I have a lot more white hair and a few more wrinkles than I would like to admit to.  I also have a large network of amazing friends.  

As I mentioned last week, I now speak to other families living with diabetes and help them to navigate through the bureaucracy of schools and governments. I enjoy chatting with other parents and offering experience as well as a friendly ear of someone who has lived their lives. 

St. Patrick’s Day for many means green beer and fun.  For thirteen years, it has been a day of reflection for me.  Yesterday I decided that that day would no longer be for somber reflection. It would be a day of celebration. 

March 17th marks two very special things–its a day to celebrate your “Irish” and since I fell in love with the country of Ireland last summer, its definitely something I would love to celebrate!  Its also the day that saved my son’s life.  A few weeks ago, there was a story on the Internet about a young boy who died because no one recognized the signs of diabetes in him.  My son was given less than 24 hours to live because it was so late before this disease was recognized in him but he did live! He is alive, happy and thriving today. That is definitely something to celebrate!

Thirteen years of incredible friendships.  Thirteen years of learning.  Thirteen years of growing.  Thirteen years of change. 

When we started this journey there were no insulin pump programs. It was rare for a person with diabetes to get the Disability Tax Credit.  Glucometers took a lifetime to read blood glucose levels and require a gallon of blood per test.  Long acting insulin was something yet to come and CGMs were bulky, blinded devices used by hospitals in extreme cases. 

Times have changed and so have we.  Thank you Sir Banting for keeping my son alive.  Thank you my friends, family and those who have followed us for your amazing support! And in honor of St. Patrick…

May the Irish hills caress you.
May her lakes and rivers bless you.
May the luck of the Irish enfold you.
May the blessings of Saint Patrick behold you.

Diabetes…Leave us alone!

Lately diabetes has been taking a backseat in my life. I have been busy with a lot of major changes and dealing with other stressors in my life.  I have left the diabetes care to my 15 year old.  Everyone says that its his disease anyway.  I see the dead test strips throughout the house. I see him bolus and after a lot of nagging, he does change his infusion sets at least once a week.

Yes, I have been frustrated by the site change frequency.  I have also taken time away from focusing on my own issues to give him the regular…do you want lumps and bumps all over your body lecture.  To which I get the usual response of “If I was a UFC fighter, I would have all of those lumps and when someone punched me they would squirt blood.”  Yes, I then hit my head against the wall and ask “why me?”

I decided that it was time for things to get back to normal…or at least as normal as they ever are in our world.  I asked my son for his meter so I could see how things have been going in my virtual absence.  I knew how the nights were going. I was testing them and had made some changes but what about the rest of the time?

Well, we are left to wonder about the rest of the time because there are serious lapses in testing! I wanted to scream. I wanted to cry.  Was he ever going to learn? I asked him what exactly we were going to do about this. Of course he had no answers and neither did I.  Did I mention that I wanted to cry?

I will attempt to go back to the hawk-eyed mother I have occasionally been in the past.  I will check his meter more often. I will nag and adjust.  I will pray that he really does “get it” one day and take some solace in the fact that he does bolus for his food…well most of it anyway.
Give me strength….

My Goal for the school year.

Its that time of year again.  New clothes have been purchased because he has outgrown “every pair of jeans” he owns…or so he claims.  Fancy scientific calculators have been bought to allow him to handle high school math and a pile of note books sit on the floor in his room waiting to be taken to school in the next day or two. 

School begins tomorrow in full force.  The bus arrives at 8am and he will be gone until close to 4pm.  We are lucky.  There is no change of schools.  There will be minimal change in teachers.  My son goes to a small but growing school.  His class size will be tiny.  His teachers have had two years to begin to understand his diabetes needs. I am not in a panic. 

My son will be 15 tomorrow. He carries his meter, glucose and spare supplies in his back pack.  There will be new expectations for grade 10 however.  I am hoping that this will be the year that he hits the ground running rather than sits on the sidelines for the first semester until his mother loses it, gets involved with the teachers and he pulls up his socks for the rest of the year. 

This will also be the year that I expect that little bit more when it comes to diabetes care.  I will be sending all of his teachers a reminder letter regarding my son’s needs and specific care.  I will also be demanding that my son actually write all bg readings ON his exams before he does any.  I would recommend this to students of any age. 

As parents, we want our children to do their very best.  As parents of children with diabetes, we have seen first hand how cognitively impaired they can be by a high or low blood glucose reading.  If I know my son studied for an exam and failed BUT had a low bg level before taking the exam, I know that the exam did not measure his true knowledge.  I can then work with the teacher to see what we can do to get a more accurate result. 

My son is not keen on testing in class.  He does not like drawing attention to himself. I have been asking him to write his readings on tests since he was in elementary school. It has been hit and miss at best.  This year, its the one thing that I really want him to get into the habit of doing. Its my care goal for the year.  Not a huge one but a big one for him–and an important one for his academic career! 

Happy first day of school everyone!!