Category Archives: Uncategorized

Fiasp Insulin. The New Kid on the Block

Fiasp Insulin the new kid on the blockIt has been a long  time since the diabetes world has seen a new rapid acting insulin brought to market.  The last one that I can remember was  Apidra released back in 2004.  It is  not surprising  then that the release of Fiasp by NovoNordisk is creating a lot of buzz.  Not to be let out, my son recently began using this insulin. Since Fiasp insulin is the new kid on the block, I thought I would give everyone a brief rundown on the highs and lows associated with it.

What is it?

Fiasp insulin was released by NovoNordisk onto the Canadian market in March of 2017.  Many of us scrambled to get a prescription because it promised better blood glucose levels without pre-bolusing for meals! According to the press release, you can dose up to two minutes before a meal and up to 20 minutes after starting a meal without compromising overall glycemic control or safety!*

How is it different?

A Medscape article states that  Fiasp is  absorbed twice as fast as its counterparts.

It does this with the help of  two excipients–Vitamin B3 is responsible for the increase in the speed of absorption and Amino Acid (L-Arginine)  has been added for extra stability.**

What do users think?

All of this science is great but most people are wondering how well it works in real life settings.  From what I have seen, the bulk of users really like it.  I could only find one person out of about a dozen users who had returned to their old insulin aspart.

When I asked my son for his review I was told “I still have highs. I still have lows BUT if I have a heavy carb  loaded meal, Fiasp kicks butt and I don’t have the same crazy swings that I always did before.” For a 19 year old who can definitely binge on carbs, this is huge.

Other users seem to have  had similar results.

Some people with diabetes found that the insulin peaks were no longer as pronounced.  They had some difficulty battling highs with Fiasp however while others found it perfect for corrections. In fact some people are purchasing Fiasp just for corrections.

Other users explained that the faster insulin action allowed them to more quickly respond to rising blood glucose levels.  This in turn meant resulted in much  tighter control.  The quick action has  also left one user to caution about the timing of any  prebolus.

Most seemed to agree that Fiasp insulin resulted in fewer food spikes and more stable blood glucose levels but as I said not everyone loves it.  For some users, their traditional rapid acting insulin seemed to work better.

Final thoughts…

All in all, most people with diabetes who are  trying the new kid on the block seem to be happy with it.  It offers another insulin choice  for those who struggled with post-meal spikes or don’t pre-bolus meals.

It must also be noted however that while Fiasp is not currently approved for use in insulin pumps in Canada, both those on insulin pumps and MDI are using this insulin aspart.

Finally, I was also happy to see that the price of Fiasp insulin was par with NovoRapid.  This meant that there was no need to worry about an increased cost for out of pocket insulin expenses.  My understanding is that Fiasp insulin is not yet on many (or any) provincial formularies.  This most likely will mean that if you decide to use the insulin and are currently using a publicly funded program, you may have to either pay for this insulin out of pocket or speak to your doctor about having special authorization added to your benefits to ensure full coverage.

Please remember to check with your diabetes team before starting any new insulin regimen. 

*http://www.novonordisk.ca/content/dam/Canada/AFFILIATE/www-novonordisk-ca/News/Fiasp_Launch_PR_English.pdf

**http://www.medscape.com/viewarticle/877892

 

The 8 things that diabetes has taught me

8 things diabetes has taught me
8 Things that Diabetes Has Taught me

I was scrolling back through old blog posts and came across a  post from 2011 titled “What I have learned“.  The title made me curious so I reread it.  It was a  pretty good post but it only listed five things so I thought I would show you the list and add in a few more things.  Here are the 8 things that diabetes has taught me….

Diabetes has taught me that it is all my fault.

I have two children. I breastfed both of them but one of them received his mother`s milk for longer than his brother.  One of them went on soy formula earlier than the other.  That one is of course the child who developed Type 1 diabetes.

Diabetes has taught me that I fed my child too many sweets.

Yes, the child who prefers cantaloupe to oatmeal cookies and was once caught stealing strawberries because they were “so cute”, was fed too many chocolate bars as a baby.

Fruit is the same as chocolate right? A banana and a chocolate bar are exactly the same right?  They are sweet I guess so they must both cause diabetes.

Diabetes has taught me that my two year old must have spent his entire life as a couch potato.

Well, he was a great sleeper until his diabetes diagnosis.  He napped regularly, went to bed early and slept through the night much sooner than his older brother.  He did watch 20 minutes of TV per day when he was a bit older when he wasn’t chasing after his brother or riding his toys around the house and yard.

I have learned that my son has the really bad kind of diabetes.

Life with diabetes has taught me that there is a good kind and a bad kind but my son must have the really bad kind because he wears an insulin pump.

After 17+ years of life with diabetes, I have yet to meet someone with the good kind of diabetes but I am sure that whomever they are, they are pretty happy with that diagnosis.

I have learned that his insulin pump does all of the work in managing my son’s diabetes.

Yes, we just push a button and let ‘er go! If only it was that easy. No blood tests, carb counts, highs or lows…ah wouldn’t it be amazing! Perhaps when the artificial pancreas is available this will be true.

I have learned that my son is lucky to have been diagnosed so young because he can grow out of it.

This is news to the many adults who are now living 20, 30 and 50+ years with diabetes.  I guess they haven’t really grown up yet.  My son is 19, outweighs me and is taller than me but in many ways he still isn’t completely grown up either. Perhaps there is still hope for him too!

I have learned that diabetes is no big deal.

Everyone’s grandmother or great uncle has had diabetes and died from it but diabetes is not a big deal.  The secret is to avoid that sugar! Its evil, except for sometimes when you have to have a chocolate bar because your sugar is high or something right?

I have also learned that there is no  cure for stupid.

When you live with diabetes–directly or as a caregiver, you will run across people who are ignorant about the disease.  Heck, I was clueless before my son was diagnosed with diabetes.  Some of those people that you run into will be kind and willing to learn.  They will be open to listen and want to truly understand what you are going through.

Then there are the other people.  Those are the people who will share with you how Okra can cure your diabetes.  They will tell your six year old to take care of themselves or they will lose a leg like Aunt Eugenie.  These people will cut you short when you try to explain how an insulin pump works.  These are the people that you feel sorry for.  Their minds are closed and they have a fatal disease called ignorance.  There is a cure for ignorance, its called education but they are further hinder by a lethal dose of stupid.  Sadly there is just no cure  for stupid.

What has diabetes taught you?

I don’t have diabetes but diabetes can still bring me down.

Diabetes is exhausting.  The emotional toll of test, calculate, bolus is incredible. I am lucky.  I don’t have diabetes, but diabetes can still bring me down.  Because I don’t have diabetes, when it does tend to be too much I can step away,  put it on the back burner and regroup before I dive  in again. I wish everyone with diabetes had it that easy.

For years I was my son’s external pancreas.  It was exhausting.  I never slept more than four hours at a time.  If I woke up during the night, I tested his blood glucose levels.  We had no CGMs.  We just had me. It was my job to make sure that he was in range.  I was the one to calculate carbs, adjust insulin ratios and log blood glucose readings.

My son tested and learned alongside of me but I carried the bulk of the burden…until he turned 16.  At 16, he decided that he could handle it all.  He carried the entire burden for the next three years unless he was visiting me.  When he was with me, I took over as much as he wanted.

Taking over wasn’t the same as doing it 24/7.  That being said, being an external pancreas also wasn’t the same as being the one to experience the highs, lows and pokes with needles multiple times per day.  Not being able to “fix it” or take it away could (can) bring me down as much as the pressure of daily diabetes care.

I  still wish that I could take the pain away. I wish that my son would know a different life.  There isn’t a day that I don’t ache for the families and other people living with diabetes knowing that they can never stop testing or injecting.  Their very lives depended on it.

As I  brush away those feelings, a new sadness often creeps in and diabetes can bring me down again.  The new sadness often comes from   my advocacy efforts.

Ever since my son’s diagnosis, I have worked very hard in various advocacy arenas.  I have worked with grassroots groups, individuals and large organizations to see changes for children and adults living with type 1 diabetes.  This means that I also am exposed to the worst in the diabetes world.  People come to me when they are struggling and don’t know where else to turn.

Don’t get me wrong, I love being that shoulder. I love being able to give back to them in the same way that others were there for me.  The problem for me arises when we can’t see a perfect resolution.  I ache when someone comes to me with a situation that I know there is just no current solution for. I want to fix it desperately but when I can’t?  Diabetes can bring me down.

At some points that sadness because I can’t fix it has been overwhelming.  Those are the times that I have had to step back a bit. I have had to reduce the time I spent on issues and allow myself to step back from the advocacy arena.  During these times, I remind myself that there are many others out there who can handle it just as well and I regroup.

I will admit, sometimes diabetes has brought me down so far that I wondered if I would come back.  Had my advocacy usefulness past? Was I too cynical? I can’t really answer that but I can say that I recharge and am pulled back into the ring by families and individuals who continue to reach out looking to me for help.

I don’t have diabetes.  Diabetes can still bring me down but it never keeps me down.  Each day I wake ready to work a little harder.  Each day I will share what has worked for us and hope to inspire and assist others living with diabetes.  I will continue to work with individuals and groups to create better care for people with diabetes regardless of education or income level.  Diabetes can bring me down but it will not win. My battle won’t end until a cure is found.

What would happen if people with diabetes weren’t constantly subjected to blame and criticism?

If you have cancer, you are usually met with sympathy and compassion.  A person diagnosed with heart disease is met with care and concern.  When people find out someone has diabetes, the first reaction tends to be blame.  What did the person with diabetes do to cause this condition? What have they done to have an A1c that high? Have you ever wondered what would happen if people with diabetes weren’t constantly subjected to blame and criticism?

choose compassion not blame
Choose compassion not blame

Think about this….a woman goes into her doctor’s office and is told that she has breast cancer. What does her doctor do after breaking this news to her? Can you picture how her friends and family will react? Most likely the doctor offers support and treatment options.  Her family will offer to assist her in any way that they can.  Everyone offers sympathy and hope.

Next imagine what happens when a man walks into his doctor’s office and  told that he has congestive heart failure.  What does his doctor do? How how does his family react? Again, treatment options and hope are given we can be sure.

Now consider what happens when diabetes is the diagnosis…. A family walks into a doctor’s office.  Their son hasn’t been himself lately.  He is lethargic.  He is drinking everything in the house and consequently is suddenly having accidents and can’t seem to hold his water.  They know that something is definitely off.

The doctor tells them that their son has Type 1 diabetes. She asks if there is a family history of diabetes? She gives them a brief rundown of what diabetes is.  The doctor provides a prescription for things like insulin, syringes, and blood glucose test strips.  No treatment options are discussed. The doctor then tells the family that they will have to go immediately to a place called “diabetes education” for a bit more training.

The stunned family is pushed out of the door and heads to the next office.  They are reeling.  They don’t understand what they have been told.  The poor family knew nothing about diabetes before this day.  It was something that came from eating too much sugar but they didn’t feed their son sugar…did they?

The family has been told that they will have to inject their child with a syringe multiple times per day.  The doctor has told them that if their son gets too much insulin, it is an emergency and he could pass out and die.  They have been told that he currently has too much sugar in his body and he needs more insulin or he may got into a coma and  die.

The doctor did asked them  if there was a family history of diabetes. Now they wonder again if they caused this.  Did they do something wrong? Did they pass on faulty genes to their baby?

This newly diagnosed family goes to diabetes education and learns all they need to know about diabetes in a few hours.  They are told about carbohydrates, insulin, exercise and many more terms that are floating around meaninglessly in their heads.  The family is overwhelmed and exhausted.

As the news of the young boy’s diagnosis reaches family and friends, well-meaning friends reach out and contact the family  Their aunt tells them that their great-uncle had diabetes…the bad kind….he died.  A neighbourhood child asks your son if diabetes is contagious because he is worried that he might “catch it” and then have to have needles too!

Can you see the difference in these three scenarios? In each incidence, the diagnosis is earth shattering.  The people involved in all three stories are forever changed but in the first two cases, they are met with compassion and care rather than being the butt of jokes.  When diagnosed with something other than diabetes, the individual does not seem to have to educate or correct misconceptions from family and friends.

Now imagine this…the same family meets with their doctor.  She tells them that their son has diabetes.  It is a serious life-threatening disease but working together, they will ensure that  he will live a long and healthy life.  She tells them about amazing treatment options and offers them numerous online resources.

A diabetes team comes in bring with them  another family who also has a child with diabetes.  This family will act as mentors for them.  The parents will be able to share their fears and experiences and the children will be able to also share with each other.  They will guide them to other supports.  The family knows that they are not alone. They know that they will make it through.

Further imagine this family going home after insulin guidelines are established but they don’t come home to judgement and fear. Instead this family walks in the door to find that their neighbours have prepared meals with carb counts so that Mom and Dad can focus on their family.  They see that Grandma has arrived to help out and learn diabetes care so that their son can still spend his summers with her.

The is way diabetes should be handled–with compassion and care.  It does happen.  There are some incredible diabetes teams out there.  There are amazing people who understand and don’t judge.

Wouldn’t it be wonderful if this was the rule not the exception? Can you imagine if there were no more diabetes jokes? No more comments about Great Aunt Sarah dying from the bad kind of diabetes?  What if parents no longer threatened their children with “if you eat one more of those candies you are going to get diabetes!”

That would be compassion in its purest form.  It would allow families and individuals to deal with this new way of life with much more support and love.

It can happen but it takes work.  We must continue to educate the general public.  Educators and doctors must continue to offer compassion and support.  It is important that those of us who live with diabetes  constantly remain available and understanding towards those who are just learning about life with diabetes. Together we will create more compassionate resources for those with diabetes until there is a cure.

Diabetes is an exceptionally costly disease

Its Day 2 of Diabetes Blog week and today we look at the high costs of diabetes care.  Diabetes takes a toll on the person living with the disease, on their relationships and on their wallets. Diabetes is an exceptionally costly disease.

diabetes is costlyFrom the moment the diagnosis comes in, your world begins to shatter.  Quickly you learn that the days of grabbing a snack on the run or leaving the house with just your keys are over.

Diabetes means that your brain must constantly be on.  You must always be thinking about carb counts, blood glucose levels, insulin on board, and a thousand other factors that were previously irrelevant to you.  The mental exhaustion is real.  The toll on the person with diabetes, their caregivers and those around them is significant.

When living with diabetes, it is vital to have supports and to use them! When a friend or partner offers to help, accept it. It doesn’t matter if they do things a little differently.  If no one dies, then it’s a win.  Accept the help.  Take a break. You need it.

Unfortunately it is not just the emotional and physical aspects of diabetes care that can be taxing.  Diabetes is an exceptionally costly disease when it comes to your finances as well.  If you don’t have excellent  insurance coverage, the stresses of life with diabetes are magnified a thousand times over.

For those of us living in Canada, there are a few benefits. First, we don’t have the absolutely ridiculously high insulin costs that our friends to the south are being subjected to.  My son was pleasantly surprised when he was forced to buy his first vial of insulin and it cost him less than $40.

$40 for a person who is in school and working part-time is enough of a cost however.  Thankfully his expense is temporary.  He has two options for coverage. He is trying to get back on his father’s insurance because he is in school.  If that becomes more of a hassle than it is worth, he can still apply for the provincial drug plan to help offset the costs of diabetes supplies.

If you don’t have those options however, diabetes is exceptionally costly.  In February of 2015, I sat down and figured out exactly how costly it would be for me to have Type 1 diabetes and use an insulin pump.   I don’t have private health care coverage, I am too old for the current provincial insulin pump program and I wouldn’t qualify for much of a rebate through our provincial program because of income.

For me to use a sensor augmented insulin pump to maintain my diabetes care, in 2015, I established that it would cost me approximately $14,500 per year.  That is over $1200 per MONTH.  Obviously this total would be drastically reduced if I just wanted to use a syringe and injections.  Either way, I would still require insulin, syringes, test strips, ketone strips, alcohol swabs and glucose tablets to just name a few items to stay alive.

Can you imagine being a young adult and having to save, at minimum, the amount of a car payment just to cover your expenses? What if you wanted to have a family but you have diabetes? You need to be able to afford diapers, clothes, food and diabetes supplies for yourself.  Even those who no longer have children are not immune.  No matter what your age, you carry the need to pay for life-sustaining medical equipment for as long as you live.  That must be exhausting.

There is no cure. There is no end in sight.  All those of us who love people with diabetes can do is continue to offer emotional support.  We can continue to assist with care and those of us in the advocacy realm can continue to ask governments and insurance companies to provide greater help.  Diabetes is an exceptionally costly disease. We must do all we can to help our loved ones deal with it.

Live Four Hours at a Time

Its Diabetes Blog week once again!!  A fun time when diabetes bloggers across the internet share their takes on various topics.   Today we look at the challenges of diabetes and how to be prepared.  For me, there is only way way to survive the unrelenting challenges of life with diabetes–that is to live life with diabetes four hours at a time.

live lie with diabetes four hours at a timeDiabetes is overwhelming. Imagine if you will waking up one day and being told “You have diabetes.  You must inject yourself (or your loved one) with some insulin.  That amount may vary but we will start you at this dose.  If you give too much insulin make sure you get some food into you quickly or you will die.  If you don’t inject yourself with enough insulin you will feel horrible, pass out and potentially die.  There is a tool to help you though.  Here is a glucometer.  Lance your finger, place the blood on that strip and then take extra or reduced insulin based on the number that you see. Have a nice day! Come back and see me in three months.”

Does that sound a little overwhelming? It is. It is terrifying! You are now holding something in your hand that has the power to sustain or take away life.

Just in case that wasn’t terrifying enough, they didn’t really go into all of the things that will change how much insulin you need.  If you are sick, you may need more insulin–except for sometimes when you need less.  Did you go jogging last night? Well, that might mean you need a bit less insulin.  Oh, you went for pizza–Heaven help you because  your readings are going to be everywhere.  You may need a bit less insulin right now but in five hours you will need a lot more.  Is the moon full? You insulin needs may change.  Are you menstruating? You may have to change your insulin.  Did your doctor just put you on a steroid? That is going to impact how much insulin you need as well.

Are you starting to get the picture? If you are injecting for a child, add in growth hormones, childhood illnesses, anxiety, stress and a myriad of other things that you don’t think about until you are handed that bottle of insulin and told to go home.

When my son was first diagnosed, I didn’t want to leave the hospital.  I was terrified that I wouldn’t get it right. And guess what? I didn’t. There were a lot of mistakes along the way. Sadly,  I am not a perfect pancreas.  Playing one in real life is a huge challenge but I learned one thing…Live life with diabetes four hours at a time.

Seriously, if you break your day down into four hour sections, your anxiety and stress load can decrease slightly.  Four hours is approximately how long most rapid acting insulins last for.  When you dose for breakfast at 8am, by noon, that insulin is usually gone and you are onto other issues.

I know, but the fat from breakfast can spill over and create havoc at lunch.  The flu bug that is brewing is still there four hours later but that’s okay.  Stop. Breathe. Just look at those four hours.  The four hours that passed are to be examined and maybe changes will be made for tomorrow.  The four hours coming are the next battle ground. Living life with diabetes four hours at a time allows you to breathe just a little.

Take a look at where you are.  What is that reading? What are you going to do? Have you figured out what you are planning on eating? Okay, now dose.  Now live.  Now breathe.  At the end of that four hours look back for just a minute.

How did you do during the past four hours? Were the readings in range? High five!! Do a victory dance.  You were an awesome pancreas!! Was the reading out of range? No problem.  Add insulin.  Add food.  Take a moment to think about what else could have been influencing the reading.  Take a breath and start the next four hours.

Doesn’t that feel better? Diabetes is a challenge.  People living with diabetes are asked to mimic an organ.  That task is monumental.  You cannot eat an elephant in one bite and you can’t take on diabetes all at once. The easiest solution that I have found is to live life with diabetes four hours at a time.

Remember to celebrate your victories.  Don’t beat yourself up for mistakes….learn from them.  One foot in front of the other. One bite at a time.

RDSP–What was the catch?

Years ago, when the RDSP first came out I was skeptical.  Free money even from the government sounded too good to be true.  Friends encouraged me to open an account for my son. They emphasized, “the government is going to give YOU money for just putting in a few dollars!”   I still continued to wonder “What was the catch?”

For those who don’t know, an RDSP or  Registered Disability Savings Plan is long term savings plan created by the Canadian government. There can only be  one plan per person.  That person must have an approved Disability Tax Credit application on file with the Canadian Revenue Agency .  Unlike an RRSP, with the RDSP  the government will provide grant money to the investor that can then be invested and earn its own income.

When I first opened the plan for my son, my understanding was that the government portion (the grant money) had to stay in the account for a period of 10 years before it could be withdrawn.  In my mind, this meant that the money that I put in when he was 15 coupled with the grant money would cover a new insulin pump for my son when he turned 25.  I was wrong.

An RDSP is meant for long term savings for an individual who has serious health issues.  You can take the money that you put in out at any point.  When you make that withdrawal however, the government portion must also be returned.

In my case, I didn’t want to take the money out right away, I wanted to leave it for 10 years.  There is however another catch.  According to rdsp.com, “Disability Assistance Payments (DAP) can be made from an RDSP at any time, but grants and bonds may need to be repaid if they have not been in the plan for at least 10 years.” This meant that no one could contribute to my son’s RDSP for a period of 10 years prior to taking any funds out if we did not want to be penalized.  There could be no grant money for that 10 year period or the amount that I contributed had to be more than the government’s grant portion. That was not what I had been aiming for.

“Payments in the early years of a plan are limited by the assistance holdback rule. Since all grants and bonds received in the previous 10 years must be repaid once a disability assistance payment is received, the plan must hold back an amount equal to that amount in case a benefit repayment must be made. In some cases, that can prevent any disability payment at all.” states RDSP.com

What does this mean? 

RDSP are not the short term savings vehicle that some of us had hoped for.  They are a long term savings for those who cannot afford to save for their own long term medical expenses.

They still offer “free” money unlike any other plan but like other retirement plans, require the owner to be in his/her senior years before needing the funds.

It has been suggested that for parents contributing for their children, they should look at it as a safety net in case something happens to the parent.  If parents were to pass early, it would give the child a bit of extra help in their care.

For me, it is an individual choice that should be made with the help of both your accountant and financial advisor. I think that you have to have a clear idea of when and how the funds are to be used.  At that point, you can better decide which of the current savings options are best for your family and your situation.

rdsp blog

All Children with Diabetes are still not safe in school

school1It has been over 15 years since I was first asked to take part in discussions surrounding the issue of children with diabetes in schools.  I still speak publicly on the issue. I still assist parents but I honestly thought that after 15 years, more insulin pumps and other awareness activities that things would be vastly improved–that all children would be safe in school.

Things have changed.  Years ago, very few school had policies in place protecting our children with diabetes in schools.  Very few educators knew their roles and parents struggled as well.

Today there are provinces that  have stepped up to the plate offering guidelines and even legislation surrounding this issue.  Sadly there is still a long way to go.  There are still parents who do not feel safe sending their children to public schools.

I once looked to the US as a standard to achieve.  The rights of their children with diabetes are protected under the American Disabilities Act.  That had to count for something!  A lawyer friend of mine reminded me that this was a just a law.  Enforcing it could often be just as frustrating and overwhelming for families in the US as it was for families here in Canada.

The moral? Keep fighting. Keep educating, Continue helping and that is what I am doing.

Many years ago, just after a change in rulings on the Disability Tax Credit, I met a wonderful lady. She worked for what was then called the Canadian Diabetes Association.  She was there first formal advocacy employee.

Our sons were of similar age.  She listened to our struggles and empathized.  Over the years we have worked together on certain projects and simply managed to touch base now and then to see who the other’s family is faring.   The yesterday she sent me an email asking for help.

She too is still working on the national issue of safety for children with diabetes in schools.  There are still many families who are fearful of sending their child with diabetes to school.  There are other families that send their children to school but are constantly at odds with the system to achieve optimal care for their children.

This saddens me greatly.  If you are one of those families that are still having issues with your child with diabetes in school, please comment or message me (advocacy@diabetesadvocacy.com) with your email address. I will pass your information along to my friend and she will contact you. Hopefully together we will be able to highlight the problems and finally work towards a resolution to this issue for everyone.

 

 

It Will Happen and It will be okay–Transitioning to Adult diabetes Care

Jump day
by John Haig

It will happen and it will be okay. That’s what I would tell myself if I could talk to the diabetes parent that I was 15 years ago.

You see, once upon a time I could tell you what my son’s bg level was at 3am. I could tell you what his reading was before breakfast. I knew if he had run high or low during school. I would be able to give you his pre and post supper glucose readings. I knew it all.

I knew when his last site change was. I knew what his last A1c was. Years ago, I could tell you when his glucagon kit was going to expire and how many carbs he ate with his last meal.

Today, I can tell you that my son does test his bg levels. His last site change was just the other night. I know this because he asked for my help.  I know that he sees his diabetes doctor again in April. I know that he has some insulin in the fridge.

I have no idea what his last A1c was. His current basal rates are a mystery to me. It’s a real challenge for me to use his insulin pump.

Years ago, I would never believe that I wouldn’t know these things. I swore that I would always test my son at night as long as he was in my house. I would be hands on in my son’s diabetes care  forever. I was certain. I was wrong.

If you are like I was, you are having a stroke reading this. You are probably thinking…Not me! I will know everything regarding their diabetes care always! I thought so too.

For the bulk of his childhood,  I knew every carbohydrate that entered my son’s mouth. I wrote down every exercise that he did and how it impacted his readings. I micromanaged my son’s type one diabetes like nobody’s business. His care would take me  40 hours per week.  It literally was a full-time job. Keeping my son alive and healthy was one of my top priorities.

The health of my children is still very important to me but this strange thing has happened–they have become adults.  As an adult, my son has asked that I don’t test him at night.  Sadly he wakes up a lot during the night now and tests himself.  He doesn’t see the sense in bothering me as well.

Because my son is an adult, he comes and goes when he pleases.  He treats his lows at work. He programs his pump while he is at school.  My son is completely in charge of his diabetes care.

It was terrifying at first I will admit. I had a need to know.  He had just as strong of a need for me not to know. He would be vague with his answers about bg readings if he answered at all.  It didn’t matter if I was mad or upset.  It was his condition to deal with and he would quietly show me that he could handle it….and when he couldn’t he would ask me.

As I have watched him handle his diabetes care,  I have been amazed.  We still occasionally share carb count guesses. I will look up the carb counts in certain food for him.  I will suggest a temporary basal when he is working long hours.  He will tell me what he has already done.

My role in diabetes care is now  on the periphery.  It shocks me that I have managed it but I have.  One day you will step aside too.  It will be hard.  How far you step will be between you and your child but eventually you will no longer know how to work their insulin pump either.  One day you won’t know their A1c but they will still call you when the going is rough–for you or for them.  For me, that remains a  huge comfort.

I have gone from the most hands on parent on the planet to an average mom.  Diabetes no longer is in my every thought. I now only think of it every few hours.  The most amazing thing is that I am somewhat okay with it all.  Don’t get me wrong, the control freak lives on and would love to know more but my son is an adult.  As a young adult, he has taken ownership of his diabetes and Mom is only allowed glimpses when he deems it okay.

Most Frequently Asked Questions regarding the Disability Tax Credit.

dtc basicsIts that time of year again…tax time! Here in Canada it is also the time that many people living with diabetes learn that they could be eligible for the Disability Tax Credit (DTC).

Here are a few frequently asked questions that will hopefully help you as you decide if you or your loved one qualifies…

  1. Does everyone with diabetes qualify?

No.  In order to qualify for the DTC you must use multiple daily injections of insulin via syringe or insulin pump and be intensively managing your diabetes care.

2 What does intensively managing your diabetes care mean?

You must be testing, injecting, logging, and adjusting your insulin doses.  These tasks must take you over 14 hours per week to perform.

3.   Do children with diabetes qualify?

Yes, children under 18 qualify without having to prove the 14 hours.  CRA assumes that the amount spent on diabetes care by both the parent and child would combine to be over 14 hours per week and therefore a diagnosis signed by the doctor on the T2201 is all that is required for their approval.

4. What is the Disabled Child Benefit? 

This is a separate amount that can be given to you for your child if your child is eligible for the DTC and you are receiving a Child Tax Benefit.

5. What is a T2201?

This is the form created by CRA that must be filled out by the person with diabetes and their doctor in order to qualify for the disability tax credit.

6. I am not disabled! I don’t want to be labelled disabled. Why do I want to fill out this credit?

The DTC, when applied to people with diabetes,  is not about being disabled.  A person with diabetes does not qualify based on a disability. They qualify based on the clause for people who require “Life-sustaining therapy”.  This subsection is for people who spend an inordinate amount of time on the therapy that they require to live.

7.  I have read that I can’t use the amount of time that I spend counting carbohydrates. Why not?

CRA feels that over time things like counting carbs become second nature to a person with diabetes and therefore no longer takes an inordinate amount of their time.

8.  I have to exercise because of my diabetes.  Can I count the time I spend at that the gym?

No. Everyone should be exercising and while there is added benefits for a person with diabetes, this is not an activity that will be allowed on your application.

9.  What tasks can I include in my application? The Diabetes Advocacy website includes a comprehensive list of what sort of tasks are allowed and a guide of how much time it takes to perform them each day.

10.  Do I need to send CRA my log book?

There is no need. CRA simply wants to see the tasks that you do each week with a specific breakdown of how much time those tasks take.  You doctor however may ask that you keep track of what you are doing for a period of time and bring it to him/her before they will sign off on the T2201 for you.

11.  Who can sign the T2201?

A medical doctor must sign this form.  This can be your family doctor, pediatrician, internist or endocrinologist.  Choose the person with the most knowledge of your care and understanding of what they are signing.  Their support is vital to a successful application.

12.   Do I need to pay someone to fill out the T2201?

No.  There is no reason to pay a fee or a percentage of your return to have this credit filled for you.  Diabetes Advocacy does offer a service to assist in filling the forms for those who are not comfortable  in doing this themselves.  I also have created a booklet that guides you step by step on how to fill the form that can also be purchased here.

If you have more questions , please email me at

advocacy @diabetesavocacy.com and I will do what I can to help.