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Tell me.

Tell me, a mom of a boy with Type 1 diabetes, what I am supposed to say when he tells me, “Diabetes stinks!” All I can do is agree, and hide my broken heart.

The other day we were talking about camp and filling in my son’s camp journal. I was helping him because he is too young to do it himself. We got the the question that asks, “How do you feel about having diabetes?” The responses were: It’s ok, it’s not so bad, or it stinks! My son replied, “It stinks!” And then he continued on and said, “Having diabetes stinks because of the site changes, it stinks because I have to stand there while you bolus me, and it stinks because you have to give me insulin for everything I eat.” He continued, “There is nothing fun about having diabetes.”

I was speechless. I told my son that I totally agreed with all of those things. I told him that diabetes stinks and I wish no child ever had to deal with it. But I know these answers are not enough. I have no idea what it feels like to have to count ever morsel of food I put in my mouth. When I am hungry I eat. When my son is hungry, he has to check his sugar, then count carbs, then give himself insulin, then he can start eating. Of course, I do all this for him, but it is him that all this stuff is happening to.

No matter how hard I try, I will never fully grasp what a daunting task this must be for him. At the tender age of 6, my son knows that if he does not have insulin with every meal he will get very sick and could possibly die. What other 6 year old has to grasp that cause and effect? He takes insulin because he wants to stay healthy. That is a huge responsibility. He is only 6.

Everybody can skip some things. You can go to bed without brushing your teeth one night. Another night you can go to bed without taking a bath. Maybe even another night you can skip dinner and just have dessert instead. My son can skip all of these things too. But, he already knows, he cannot ever skip site change day or his numbers will skyrocket making him feel awful. He also knows he cannot skip getting his insulin after every meal no matter how badly he just wants to get up from the table and run and play. He knows these things already. He may want to fight it, and he may say it stinks, because that’s all he really can do.

My little 6 year old son is my hero. Anyone who can get up everyday with the biggest smile on his face ready to conquer the world full well knowing that stinky diabetes is still there is a true hero. Bolusing won’t go away, carb counting won’t go away, diabetes won’t go away, but fortunately neither does my son’s strength. He beats diabetes everyday, no matter how stinky he thinks it is.

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Not too much sugar.

Demystifing Type 1 Diabetes one thought at a time…you can’t get type1 diabetes from eating sugar, cake, or juice it is an AUTOIMMUNE disease…not so for Type 2.

This is a really big misconception, and one that takes me off guard everytime I am confronted with it. I am shocked at first when people ask me, “Did your son drink a lot of juice as a baby?” As to imply that the reason he has Type 1 Diabetes in the first place is because I drowned him in juice when he was an infant.

Then I am saddened that yet again this question is being asked of me. It makes me sad because moms should know that giving your child juice as part of a healthy meal plan would never, ever give your little one Type 1 Diabetes. It should just be something that comes with becoming a mom.

Then I get angry. I get angry because I realize the what the question really is, “Did you give your child Type 1 because you gave him juice?” As if I would chose to give my child a disease that would require him to have to take shots of insulin with every meal, prick his finger a minimum of 10 times a day, remain unsure of his future health, fall into a coma, have repeated seizures all because I wanted to give him juice in a sippy cup.

And so here we are, www.type1demystified.com, a place where I can hash all this out, so that Type 1 Diabetes can be understood by more than the people whose lives it so deeply and profoundly affects.

While research has shown that there is a correlation between unhealthy eating habits and Type 2 Diabetes, this is just not so when it comes to Type1 Diabetes.

As explained on the American Diabetes Association website, what happens to the body of a person just diagnosed with Type 1 Diabetes is as follows:
Inside the pancreas, beta cells make the hormone insulin. With each meal, beta cells release insulin to help the body use or store the blood glucose it gets from food. In people with type 1 diabetes, the pancreas no longer makes insulin. The beta cells have been destroyed and they need insulin shots to use glucose from meals.

When my son was diagnosed with Type 1 Diabetes, it meant that his pancreas no longer makes insulin. His body had begun to attack the cells inside the pancreas that make insulin so that they no longer make the insulin. This does not happen because he ate sugar, or junk food, or soda. It is an autoimmune process that occurs from within the body. There is no outside source (food or lack of exercise) that can cause Type 1 Diabetes.
This is not the case for people with Type 2 diabetes. The following paragraphs from both the ADA website and WebMd website respectively, continue on to explain the difference between the two types of diabetes and the difference in their origination.

People with type 2 diabetes make insulin, but their bodies don’t respond well to it. Some people with type 2 diabetes need diabetes pills or insulin shots to help their bodies use glucose for energy.
Diabetes is a number of diseases that involve problems with the hormone insulin. While not everyone with type 2 diabetes is overweight, obesity and lack of physical activity are two of the most common causes of this form of diabetes. It is also responsible for nearly 95% of diabetes cases in the United States, according to the CDC.

People that get Type 1 Diabetes can in no way avoid getting this disease. Like my son, there was nothing I could do to prevent or even prepare myself from smacking into the brick wall of a diagnosis of Type 1 Diabetes. Believe me, if there were anyway I could have avoided this disease being bestowed upon my son, I certainly would have.

That is just not the case for people with Type 2 Diabetes. There are ways to avoid Type 2 Diabetes. Type 1 Diabetes is UNAVOIDABLE for the people that do eventually get diagnosed.

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First post.

People with T1 diabetes (esp. kids) must test their sugar (prick their finger) 10 times a day to catch unexplained highs & lows to avoid coma & seizures.
The only way to ensure that your child is receiving the proper amount of insulin during the day is to TEST, TEST & TEST!

According to the American Diabetes Association (ADA) website:
How often your child checks could change from day to day. Talk to your doctor or diabetes educator about when and how often to check on a normal day. Because different people require different treatment options, the Association does not recommend a specific number of tests per day. Your doctor or educator can work with you and your child to determine the best treatment plan. (People who take insulin generally require a minimum of three or four tests per day, though this can vary widely and it may be necessary to test more often.)

While recommendation or lack thereof from the ADA may be helpful to someone who just wants some basic information regarding Type 1 diabetes, they really do not paint the whole picture for someone who really needs to live with or care for a child with Type 1 diabetes.

A child with Type 1 diabetes can easily test a minimum of 9 times a day, sometimes more. While this may seem excessive to some, especially to people without Type 1 diabetes, but let me break it down for you.
A child with Type 1 gets tested:
(1) when he wakes up
(2) 2 hours after breakfast to make sure the correct ratio is being used for breakfast and that all is working properly
(3) before lunch
(4) 2 hours after lunch to make sure the correct ratio is being used for lunch
(5) before dinner
(6) 2 hours after dinner to make sure the correct ratio is being used for dinner
(7) before bedtime snack
(8) 2 hours after bedtime snack or before the caregiver goes to bed
(9) 3am to ensure numbers are not rising or dropping

These test times do not include days of extra activity (10), days where a low is being treated (11), days where a high is being treated (12), or sick days (13).
Again, understandably, this may seem excessive, but let my provide a real life example of what can happen if you do not test on a regular schedule everyday for the rest of the child’s life.

  • If a caregiver tests before breakfast and the number is 99 the caregiver can go ahead and give breakfast. Before breakfast insulin is given to cover the carbs that the child is going to eat. Child finishes eating and goes to school.
  • If the 2 hour check is skipped for whatever reason, the next check would not be until lunch time, possibly 4-5 hours after breakfast. Child feels fine all through the morning of school so no one even thinks that anything can be wrong.
  • Child goes to lunch and says he feels sick, like he is going to vomit. Go to nurse, check sugar and the number is 525!! Child is tested for ketones and they come back high. Somehow, somewhere something went wrong since this morning. As there was no 2 hour check no one is sure where the problem occurred.
  • Go back to the history in the pump and see that the breakfast insulin was given so that should have worked fine. Go to check the child’s pump that looks good. Check the child’s site where the pump connects to his body that looks good. Check the tubing of the pump, THERE IS A CRACK IN IT! Somehow between the first test of the morning and lunch time a crack occurred in the tubing and the child was not receiving any insulin…the very thing he needs to stay healthy and alive.

Now, while this does not happen every day, and in fact, it rarely happens, but you tell me, what caregiver of a child with Type 1 diabetes is going to take that chance with their child’s health and life.