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Max has type 1 diabetes

12 February, 2012

Version française ici.

Last week was probably the most painful week of my life.

Our son Max was diagnosed with type 1 diabetes.

Here’s the story of the few days that altered our lives and which were extremely emotionally painful.

Since Xmas, our son Max (two and a half years old) was insistently demanding to drink more and more water. To the point where we had to give him water every 30 minutes and of course change his soaked diapers more frequently. After a few weeks of this dynamic, we decided to consult a pediatrician. We thought this might be behavioural, after all he is going through his terrible twos and he could just want more attention after the arrival of his little brother a few months ago.

So two weeks ago, we went to see our pediatrician to get Max checked out. We had measured how much water he was drinking and it was twice the amount of liquid a toddler his age was supposed to drink. This alarmed the pediatrician right away and he took a sample of his urine to test his sugar levels. While not through the roof, his levels were high enough that we were immediately sent to the ER at the Montreal Children’s Hospital with a pre-diagnostic of diabetes.

To our biggest surprise and dismay, the diagnosis was confirmed a few hours later and the hospital decided to keep Max in intensive care for the night in order to stabilize his sugar levels as soon as possible. They don’t take any risks with children his age.

Max has type 1 diabetes which cause is unknown. There is no diabetes history in either of our families. This happens in one out of 500 kids in North America. It’s even rarer to manifest in a child that young. Scientists still don’t completely understand the cause of this random manifestation of the still incurable disease. Basically, Max’s pancreas doesn’t work and so doesn’t produce insulin to digest the sugar in carbohydrates (glucides in French) and provide him with the energy he needs to function and grow. As a consequence he accumulates sugar in his blood stream and acidity from the body which can’t process sugar and has to tap into other resources such as body fat. That is why he needed to re-hydrate that much and evacuate all the extra sugar in his system.

Type 1 diabetes is not like type Type 2 which is mostly triggered by diet and lifestyle and that kids diagnosed with can potentially outgrow when they get older. Luckily with Type 1 diabetes, Max can basically keep on eating what he wants and behave like every other kid and have sweets and cake (on occasion) as long as we monitor and give him his insulin appropriately. There is a lot of misconception about diabetes type 1 as it is confused with type 2.

As a consequence of all of this, Max will have to have his blood checked at least 4 times a day to measure his sugar levels and receive at least 4 insulin injections a day to balance his requirements for insulin.

We had no idea about what diabetes really was and had a lot of concerns. Is it life threatening? What limitations will this condition have on our son’s lifestyle? How painful will all the injections be?

I was mostly anxious about the idea of having to hurt our child so many times a day.

Our first training session showed us the tools we’d be using and of course we were extremely anxious about the pain this might inflict Max. Very fortunately with the advances of medecine, the blood drawing and insulin injection equipment is almost painless and very efficient (fast).

The effort is mostly about being disciplined and consistently monitoring and administering his insulin intake. And of course Max accepting the whole procedure.

My wife and I of course see the impact of this on his life. The loss of innocence. The sense of self discipline and being responsible and also different from the other kids at such a young age. This news is life altering for all of us. Of course as parents we are more aware of this and we’re worried and very concerned.

For Max on the other hand, it will be his reality, he won’t remember anything different. It will also be up to us to not make him feel different, but rather special in a good way and that he still can do whatever he wants (as long as he respects certain rules).

A week into taking care of his diabetes, we have made it a game for him and we involve him in the process as much as possible. Things so far are going fairly well and Max accepts this without too much of a fuss. We get Flash McQueen (the drop of blood) into the garage (the meter to measure his blood) and we give him “magic potion” (insulin) before breakfast and supper so he can be strong. [Flash McQueen is the main car character in the movies Cars, he is red and awesome!]

The more we’re educated the more we can cope and put the whole situation into perspective. Max’s condition can be controlled and the tools they gave us are mostly painless, just a little bit of a hassle for Max.

The Chief Doctor in Endocrinology at the hospital told us that if our child had to have any chronic incurable disease, diabetes was the best one to have because of the state of research on the disease and also because it’s the one with the less impact on our child’s ability to do whatever he wants in life.

There is almost a century of research on the disease and millions of dollars invested in finding a cure every year. It is not life threatening if we follow the guidelines; it’s not going to prohibit Max from doing any activities as long as he follows the rules. We know that there are a lot of successful athletes and people in all trades that have diabetes in one form or another and who are extremely successful.

It’s also likely that medecine will find a cure in Max’s lifetime. After all he has another century to live.

A lot of our friends have shared stories with us about friends of theirs who have normal lives, are very successful, some of them real “party animals”, and who have long and happy lives.

All that said, it was still a huge emotional blow for us and it will take some time to fully metabolize this news. After two weeks of taking care of Max’s diabetes we have settled in somewhat of a routine and this feels very manageable. For sure, it adds an extra level of complexity especially while taking care of a toddler and a baby, but all in all, things could be much much worse.

At the end of the day, the main remaining feeling we have is that we’re very grateful.

The Children’s Hospital in Montreal is awesome and the staff has taken great care of us. They have a specialized unit for diabetes and treat 600 children there every year. There is a very structured program and support system for parents with kids who have diabetes. We’re getting six training sessions (3 in diabetes managements and 3 in diet management) and coaching every day for the next 3 months as well as constant follow ups through Max’s childhood and teenage-hood. The Children’s Hospital is also at the heart of research on diabetes for children.
Insulin was discovered and first injected in Toronto (Canada) in 1920 and since then the body of Medicine has been trying to find a cure all around the world. Canada is also the country with the most money invested in research in youth diabetes through the Juvenile Diabetes Research Foundation in which I have decided to get heavily involved with in the near future.
We also have one of the best pediatricians in Canada to take care of both our kids, which is exceptional and priceless here in Québec.

Our families and friends have been amazing with all their support. We have received a lot of emotional support and encouragements as well as a lot of shared stories about people with diabetes which reassured us about the kind of life Max will be able to lead: a mostly normal one.

So we’re in good hands even though it’s a lot of change.

next post: May 7th, Max’s blood sugar reading was at 7.7

previous post: The value of online Communities

6 Responses to “Max has type 1 diabetes”

  1. joule says:

    Je vous aime.

  2. Amelie says:

    Sending all my love. He’s such a precious gift.

  3. Chris Galanis says:

    Thank you Stephane for your beautiful words and the courage both of you are displaying. On top of all the amazing support from the doctors and nurses and research, the other priceless gift Max has is in being blessed with two incredibly loving parents who have the capacity to know how to handle a terrifying situation with such grace. Also it’s so incredible that you can share your experience with your wider network of friends, it’s so humbling to know that amidst the chaos of everyday life, people we know and love are facing such difficult times every day. Sending love to all four of you. – chris

  4. Marjolaine says:

    Ça doit être un choc! Ma fille a le même âge que ton fils et je compatis car ils sont trop jeunes pour devoir faire face à ce genre de réalité…plate. Bravo pour ta force et ta créativité pour rendre sa maladie plus facile à accepter. Bon courage et continue de donner des nouvelles.

  5. Vincent says:

    Vous êtes courageux et d’excellents parents. Je vous envoie plein d’amour.

  6. Victor says:

    I will keep you in my prayer, my friend, so that you will get through this, which I know you will. Max is lucky to have such loving and smart parents as you and Maya. With the advances of medicine things will only get easier. The real challenge in this life is how much love you are able to give and at that you are a true winner.

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