type1demystified.com

Each year more than 15,000 children are diagnosed with diabetes in the U.S. That’s 40 children per day. And to a person with Type 1 diabetes each one of these people are considered ‘family.’ This disease brings people together.

When my son was diagnosed I finally understood what it meant to be truly alone. I had no one. Sure I had my husband, my mom, my dad, my brother, my other baby, but in reality, I had no one. I was completely alone in this world. I was just told my oldest baby would die if I didn’t learn how to give him shots and monitor his food intake. This was like nothing else I had ever known.

I cried alot the first few days after diagnosis. I cried in the shower, I cried while reading every book I could about parenting a preschooler with Type 1 diabetes, I cried instead of sleeping, I cried in church, and I even cried in Shop Rite. I was crying because I was terrified. I was crying because I felt so helpless. I was crying because I was alone.

Then about 10 days after diagnosis, a friend mentioned to me that her neighbor had a little boy who also had Type 1 diabetes, AND she could give me the woman’s number so that I could call her. Now normally, calling strangers was the last thing in the world I am known for. I am not the person that talks to other people on line in the supermarket. I typically stay to myself. But, this day, I couldn’t hang up the phone fast enough to call a woman I have yet to meet just because we had this one major thing in common, we both had little ones with Type 1 diabetes.

I spoke with the woman. She directed me to a wonderful place on the internet called Type 1 Parents, www.type1parents.org, she said it was a place where parent’s of kids with Type 1 go to connect and chat on a bulletin board. I knew what a bulletin board was, I had joined a couple  for my children’s birth years, but this one was specific to Type 1 diabetes. I had never heard of such a thing. I joined immediately.

In one fell swoop, I wasn’t alone. I had 500 people at my fingertips that were going through the exact same thing I was going through. I was no longer alone. Although I had never met these people, and still 2 years later only met a handful in real life, little did I know that these people would become like a family to me.

It happens now in real life too. We went to family camp. It is a camp for kids with diabetes, Camp Nejeda in New Jersey, www.campnejeda.org. We met 13 other families that time at family camp. While I rarely talk to anyone from family camp, one of the families lives in my town. Both of us moms know that although we do not talk on the phone regularly, we are in a different kind of family together, and at any given moment if need be, I will be at her side. I am there for her if she needs supplies, or support, or even a babysitter. I am there for her in a hearbeat, because I know exactly what she is going through.

It happens in real life everywhere, not just at camp. On a cruise I met 2 young ladies ages 12 and 16 that both had Type 1. I knew because I saw their pumps. I walked right up to their mom, introduced myself and my son with Type 1, and we both hugged. I don’t even know this woman’s name or where she lives, but for those 8 days on the cruise we were family. We talked about the kids’ numbers when we saw each other, we offered advice, we hugged some more.

I heard through the town grapevine that there is a little boy just 1 year younger than my son who has been recently diagnosed. I don’t know the mom personally, but I left every possible way to reach me though another mom that knows her. I am aching for her to get in contact with me. Not for me, but for her. I am in an okay place with our diagnosis. To pat us on the back, I think we handle having Type 1 rather well. I want that for this mom and son too.

It is taking all of my strength not to call the mom that I know to see if she passed on my number. I want to make this new mom a member of my family too. I want her to know I am here for her. I can help with supplies, support, friendship, playdates, and most importantly, understanding. I understand to the core how life altering it is to have a child diagnosed with Type 1 diabetes. I want her to know she is not alone, she has a friend waiting for her.

Living with Type 1 diabetes, and making the correct decision on insulin needs, is like living everyday in a chess game. One moves determines the next move, and there is always waiting involved.

People with Type 1 diabetes receive insulin to live. The two kinds of insulin they use are basal and bolus. Basal insulin is the background insulin that is released into their body a tiny bit every few minutes. This is either through a basal insulin like Lantus given through a shot once every 24 hours, or through an insulin pump that delivers fast acting insulin every few minutes. How much insulin that is needed is determined through numerous factors such as weight, age, and time of day to name a few. The best way to determine how much basal insulin is needed is to log blood glucose values throughout the day when the person has not eaten any carbs. Not eating carbs allows the person to use only basal insulin. So if the numbers go up without eating the person knows they need more basal at that time, if the numbers go down without receiving any extra insulin then the person knows they need less basal insulin. See what I mean about a chess game?

Every decision on how much basal insulin depends on something else. If my son goes too high after not eating for several hours then I can determine that he needs more basal insulin at that time. I make the change, then I wait. I wait until the exact same time the next day, make sure he doesn’t eat again, and check his sugar to see if it remained stable thereby telling me that he is getting the correct amount of insulin for that time of day.

Basal rates are different for some people at different times of day. My son currently has 7 basal settings in his pump. He gets an enormous amount of insulin from 8:00pm to midnight and then is drops off and then remains even all day. The only way I was able to figure out the best basal rates for him was to test, make changes, wait, make more changes, etc.

People without Type 1 diabetes who have a working pancreas also receive a basal insulin. They don’t know about it, but the pancreas is working hard for them determining how much basal they need in order to remain an even blood glucose value. That is why they don’t have Type 1 diabetes, their pancreas can do that for them.

The second type of insulin that people with Type 1 receive is bolus. This is a fast acting insulin that is given any time carbs are eaten. This is usually give in the form of a ratio. For instance, my son now gets 1 unit of insulin for every 16 carbs that he eats at breakfast. The rest of his meals are different ratios. The only way I can determine if my son is getting the proper amount of insulin at meals and snacks is to test him 1 hour, 2 hours, 3 hours, and 4 hours after eating. You always look to get the best number possible for each time frame. This is where the waiting really takes place. It may take days to figure out one meal ration. If on Monday, my son’ number is too high at testing times after breakfast, the only way I can fix it is to change the ratio for Tuesday. If his number is too high on Tuesday at the testing times, the only way I can fix it is to change the ratio for Wednesday. Do you get what I saying. Waiting. Changing. Waiting and so on.

Now, I have to do this for 6 separate times a day over the course of several days. My son has different ratios for different times of day that he eats. Lots of testing, note taking, changing and waiting helped me determine what are the best ratios for my son at different times of day.

One move relies on the next. It is just like a chess game. You are always waiting to see what the previous move is going to do to the game. One change in breakfast ratio may have an effect on the snack ratio and so on. It is never ending. Like I once said before, living with Type 1 diabetes is like running a marathon that never ends. Well, it is also like playing a chess game that never ends. You are always waiting on your opponents next move to determine where your next move is going to be.

For most people with Type 1 diabetes every carb must be covered with insulin. There is no limit to the amount of carbs or the amount of insulin allowed in one day. A working pancreas does not limit insulin, therefore most people with Type 1 diabetes do not need to either.

A person without Type 1 diabetes has a working pancreas. The pancreas secretes a tiny little bit of insulin all day into the person’s body to keep their blood sugar steady. When the person without Type 1 decides they are going to eat a piece of cake, the working pancreas starts to put out more insulin to get prepared to cover the cake that is about to be eaten. The pancreas puts this insulin out before the cake hits the belly, to maintain steady blood glucose levels. Now, if this same person without Type 1 diabetes wants another piece of cake, the pancreas just puts out more insulin for the next piece of cake. The healthy working pancreas will never stop giving insulin, there is no limit to the amount of insulin it puts out. As long as the person is eating and living, the pancreas is supplying insulin. There is no insulin ration so to speak.

Now, a person with Type 1 diabetes does not have a working pancreas, so their pancreas does not produce any insulin, nada. They must take shots or wear an insulin pump to get their insulin. They need insulin to be running through their body 24 hours a day just like a person without Type 1 diabetes, and they need insulin to cover carbs. So, just like everyone else, a person with Type 1 diabetes can eat and eat and eat some more carbs, as long as they cover, cover, and cover some more with insulin. There is no ration with insulin even if it comes from an outside source such as a shot or an insulin pump.

A person with Type 2 diabetes is VERY different than both of the above examples. Their bodies do possibly still make some insulin. That’s why it is in their best interest to eat as little carbs as they can to allow their insulin to try it’s hardest to work properly. It is when a person with Type 2 diabetes eats too many carbs, that the pancreas may not have enough insulin to cover that food. If they stay within their amount of carbs per day they have a much better chance of keeping their blood glucose levels even.

This is not so for the person with Type 1 diabetes. If my son eats as little as 4 carbs without insulin, his blood sugar will start to rise and it will not come down on it’s own, insulin must be given. So, as long as my son continues to eat a healthy diet, and continues to grow ever so beautifully, then it does not matter to me if he eats 50 carbs a day, 100 carbs a day, or even 150 carbs a day as long as he covers each and every carb with the appropriate amount of insulin.

Think of his insulin pump and me as a team working as his external pancreas. I take all the notes, and program the pump to the appropriate settings for every minute of every day to keep my son healthy, and the pump gives insulin a little bit at a time all day and in larger doses to cover carbs. We are a team, the pump and me. We are the external pancreas that allows my son to be the happy healthy 5 year old that he is today.