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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.

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It could be worse?!

The phrase “It could be worse,” in reference to having Type 1 diabetes should only be uttered by people actually living with the disease.

When my son was first diagnosed with Type 1 diabetes almost two years ago, I heard that ‘it could be worse’ from many, many people. Sometimes I would smile, sometimes I would agree. Other days, when I didn’t want to hear it, I replied, “Yeah it could be you.” Forgive me for that, I was in pain from the diagnosis. Regardless of what my response was, it was a phrase that was said to me on more than one occasion, and if I truly think about it, it was said to me more on than 20 occasions.

Time went on, the diagnosis became old news and we were successfully living with Type 1 diabetes. The ‘it could be worse’ comments stopped from outsiders, but they started to come from me. People would tell me that they didn’t know how I was doing it, raising a 4 year old with Type 1 diabetes, and I would answer, “It could be worse.” I meant it. I didn’t want a pity party for raising my son. I was happy. He was happy. We were doing ok, and we didn’t need people to feel sorry for us. I answered, “It could be worse,” to put their mind at ease that we were doing fine.

I know in my heart as a parent that it actually could be worse, but now as I have evolved and grown again with this disease, I don’t say that phrase anymore. In fact, I am ashamed that I ever actually said it. Not because I don’t think it some time, but because I am not the one living with Type 1 diabetes, I am just the caretaker. I don’t have the right or authority to say that ‘it could be worse’ in reference to the disease that my son is living with. Only he can make that call.

I started thinking about this phrase this weekend at camp. There were many parents there with older children. They were diagnosed older than my son, so the level of hands-on care that they provide is different. Some had not given a shot to their child or themselves. I say themselves because before I do anything to my son I do it to myself including give a shot to myself, do a site change on myself, check my own sugar, and my son has done all these things to me too. The level of hands-on care is quite different with younger children. Ok, getting back to ‘it could be worse,’ many of these parents used this phrase.

They feel their life has returned to normal since diagnosis, and they claimed that living with diabetes wasn’t that bad and it could be worse…FOR THEM (added by me). Because we were in a parent session there were no children around, but I wanted to scream to them, “It could be worse for who? You? Or you child?” Was anyone asking their children how they felt pricking their finger 10 times a day? Was anyone asking their child how they felt giving themselves shots or changing their own pump site? Was anyone asking their children if anyone laughs at them at school now that they are different?

Now, let me say this, I am not judging these parents. Everyone is different. And maybe their lives haven’t changed that much. Maybe they’re in denial. But I really wonder when my son, or these kids, are checking their sugar, changing their pump sites, weighing their food, counting their carbs, treating their lows, and feeling their highs if they truly believe that it could be worse. Maybe? Maybe not? But it’s not for me to say.