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Every parent of a child with Type 1 diabetes knows what a pediatric endocrinologist is AFTER their child is diagnosed. Before diagnosis the extent of my knowledge of doctors was dentist, OB/gyn, pediatrician and general practitioner.

I will never forget when I diagnosed my son by telling the pediatrician to check the sugar in his urine, she came back to tell me I was going to have to find a pediatric endocrinologist. She could have said, you have to find a Pachycephalosaurus, a type of dinosaur, as I knew the same about both. Absolutely nothing!

Now over two years into this, I am very aware of what a pediatric endocrinologist is and does. We are so familiar with the role of a pediatric endocrinologist that we have dropped the pediatric altogether and have subsequently chopped endocrinologist down to simply endo.

Endo is as common a word in our house as is school, or milk, or toothbrush. The endo is part of our diabetes team. While we only see the endo every few months for check ups, they are an integral part of our diabetes life. While I rarely (rather never) rely our on endo for the day to day decisions I do expect him to see eye to eye with me when he does make decisions regarding my son.

I need to know that our endo sees my son for what he is, a six year old boy with Type 1 diabetes and not just a diabetic. I need to know that our endo will help my son achieve his goals with regards to his diabetes, just as I do. I need to trust that my son’s endo will be there in my place when my son is 16 and wants no part of what his mom has to say to him.

After two years into this I am also aware that not all endos are the same. There are good endos and bad endos. The good ones support, listen, assist, and challenge. The bad ones do exactly the opposite. They tear down, ignore, judge and belittle. The hardest part is it takes a few visits to separate the good from the bad. A few visits with the wrong endo can do damage to both the health of the child with diabetes and the esteem of the main caregiver. Two things that must be nurtured to ensure the team is ready for the long haul of dealing with Type 1 diabetes.

In essence, the endo can make or break the team.

A good endo can help provide the building blocks for good decision making and a long life of successes of living with Type 1 diabetes, and a bad endo, well a bad endo can kill you.

As a mom of a child with Type 1 diabetes I wish I had an answer for every out of range number that I see on my son’s meter. It makes it even harder to swallow when an outsider wants an explanation for an out of range number too.

You would be surprised.

As we don’t hide when we test my son’s sugar, there are many times when people around can read the meter. While this seems like the rudest thing to me, reading my son’s  meter over his shoulder, then the question hits. “Why is his number so high?” or “What did he eat?” and then I realize reading his meter only seems like the rudest thing, it is the questions that follows that is.

Out of range numbers, both high and low, are common with Type 1 diabetes. They happen for many reasons, almost too many to list. High  number come from stress, too little insulin from either human error or pump failure, high fat foods, growth spurt, hormones, and the tides. Seriously, it’s not the tides, but sometimes it feels like it.

Eating certain foods do not necessarily make a person with Type 1 diabetes sugar sky rocket. For instance, you would think that a bagel with over 80 carbs would make a person’s sugar sky high, and for some it may, but for my son we just give insulin and he stays in range. Food is not the enemy, type 1 diabetes is.

Food is not the enemy. Type 1 diabetes is.

Type 1 diabetes plays a game with my son’s sugars and I am not made aware of the rules. You would think the ‘bad’ foods like ice cream and chocolate should be forbidden to ensure even blood glucose levels. Not so. My son can eat ice cream and chocolate with no problem. In fact, my son requires less insulin for these foods that others.

Pretzels on the other hand are not so kind to my son’s blood sugars. How many times have you in your own life picked up a quick bag of pretzels over a bag of chips for a fast snack? Pretzels just seem like the better choice. Not so for my son. Pretzels would cause high sugars for hours on end.

High and low blood sugars happen. Sometimes they happen with a reason and sometimes your guess is a good or bad as mine. Not food, not hormones, not stress, not the weather can take all the blame for high or low sugars. Type 1 diabetes is the only one to blame. Always.

My answer to the question “Why is that number so high?” is always the same, I say, “He has type 1 diabetes.” And for me that says it all.

As a mom of a child living with Type 1 diabetes there are many times when I feel like a mad scientist when I make decisions regarding my son’s pump settings and insulin intake.

My son wears an insulin pump. This insulin pump holds one type of insulin, fast acting, but it is given to my son in two different ways. One way is the basal insulin, or background insulin, that is pumped through his pump every few seconds over a period of 24 hours.

For instance, my son uses 9 units of background/basal insulin a day. That 9 units has to be broken up over 24 hours to mimic the natural workings of a pancreas. There are times during the day when he receives one amount, say .325 units of insulin per hour with minuscule amounts of insulin being released every few seconds. Then there are other times of the day or night when his basal rate as we call it goes up to .775 units of insulin per hour with tiny amounts of insulin being released every few seconds.

This is what a working pancreas would do. It would release however much insulin a person needs to keep their blood glucose in the normal range. People without Type 1 diabetes do not go above a certain blood glucose number because their pancreas will not allow it. If a person without Type 1 diabetes needs extra insulin to combat growth hormones the working pancreas does it automatically. Or more insulin to combat an up and coming illness, no need to worry, the working pancreas is on the job. The person without Type 1 has no need to intervene or even know what the pancreas is doing. The working pancreas is a beautiful thing.

For my son there is no working pancreas. There is mom. The mad scientist.

It is up to me to evaluate all those thousands (yes thousands) of blood glucose checks to determine what would be the best basal setting for my son at any given time of day. Over a course of 10 blood glucose checks a day I can get a good picture of what my son’s insulin needs are. If he goes higher at certain times of day I can adjust the basal insulin or background insulin to keep his numbers steadier.

Once I have decided on a plan of action on how to adjust a basal rate the next step is to test his sugar several times in that time frame over several days to see if the results were achieved.  Steady numbers mean it was a good move. Unsteady numbers, rising or dropping, mean that is was not the right decision. One snafu is if the basal rate was only moved up a tiny notch, say from .325 to .350, and then we begin to see lows there is no other move I can make. Or so you would think.

If the move up a .025 unit of insulin per hour did not do what I needed it to do, keep my son’s sugar steady, then I get to evaluate timing. If the previous basal rate ran from 7:00pm to 10:00pm and that was causing his sugar to rise, and by upping the basal rate caused him to drop too low, then maybe keeping the rate until 10:30pm would do the trick.

Now the only way to tell if that move worked is to test the next night, the next few nights, to see if the results were achieved. Steady numbers.

Confused?

Now you understand when you talk to me on the phone why I never know the day or the date. There is not enough room in my head for trivial things like that.

I am a mad scientist. I am a mom.