As many of you know Type 1 diabetes is nothing if not unpredictable. Stress, excitement, hormones, illness, the weather, and the tides apparently can affect the blood sugar of a person with Type 1 diabetes. This also holds true when amusement park rides are thrown in the mix.

Each time my 7 year old son stepped on line to enjoy a ride my heart started to beat faster. I couldn’t help but wonder if this would be the ride that would cause his sugar to drop too low. I wonder what he will do if he is mid-way through a scary ride and he starts to feel ‘shaky’, his terminology for going low. Would he have the sense of self, while on a scary ride, while trying to hold on,  to go in his pocket to take out the candy that we have in there in case of  low?

Would you?

Yes, we test his sugar as we make our way through the rides, but it is not possible and I believe downright mean to check my son’s sugar before every single ride. I just won’t do that to him. Talk about sucking the fun right out of the air. And quite honestly it wouldn’t tell me much. Yes, his number could be perfectly in range before going on the ride, but if there is a line before the actual ride, and if there is a wait for the ride to start, there is more distance put between the last number I have on his meter and the level where his body actually is.

I watch his face closely as he waits for the ride to start. I try to analyze the look on his face. Smiling and happy are easy ones to interpret, he is feeling good in both body and spirit. It’s the more serene faces that make me nervous. I have to wonder from the sideline if his face is telling me he is a bit scared of the ride he has chosen, or his body is not feeling right. I never know what the face is telling me. I have taken to giving my son the thumbs up signal in hopes that he will reply in a similar manner, thumbs up, to let me know that all is ok, at least diabetes wise. He may be scared of the ride, but that is a rite of passage to growing up. To go low on a ride is not. Going low is not a rite of passage to anything, going low just stinks.

I could live my whole life without ever going to an amusement park again, but I don’t think my son would appreciate that. And so it goes. We will go to amusement parks, although I am not amused, and we will pack our gummy lifesavers, glucose drinks, Starburst, extra test strips, and Glucagon. And despite all this preparation and worry, we will have fun. Diabetes is tough, but rest assured, we are tougher. Six Flags here we come!!

A working pancreas knows how much insulin your body needs while it is sleeping, when it is waking up, or when it is going to play an active game such as soccer. While this is the same insulin a pancreas secretes into the body when someone eats, this is a little different because it is the background insulin that is going 24 hours a day to keep a person’s blood glucose nice and steady. Whether you eat or not your pancreas secretes insulin. It’s a busy little bugger that pancreas! And on top of all this, a working pancreas doesn’t care what time of day it is. If your teenager without diabetes sleeps until noon the pancreas knows that he is still sleeping so the pancreas still puts out the amount he needs while sleeping. Unfortunately this is not the case when using an insulin pump.

My son has 8 different basal settings programmed (by me) into his pump. The way we determined what setting he needs at what time of day is by testing his glucose throughout the day and evaluating the numbers. An on-the-money basal pattern should keep a person within 30 points. So, on a day when I want to check my son’s basal rate each blood glucose check should be within 30 points of each other. We don’t want to see too big of a drop or rise, we want to see an even line. That means that the pump’s basal settings are correct. The basal setting is for when the person is not eating, it doesn’t have to do with covering food with insulin, that is called bolus, but that’s another post.

Basal settings go by time. My son has one basal setting from 5:00am to 10:30am. Works great on school days when he gets up at 7:00am. Something must happen in his body upon waking that I have subconsciously figured out and he can stay pretty even. On the weekends when he sleeps later, past 7:00am, I have to watch his numbers. For my son, sleeping late means that his sugar will probably go low. So somewhere in his tiny body things are happening when he is sleeping that are different from when he is awake so the basal settings that work all the time with a 7am wake-up just don’t work for an 8:30am wake-up. I do not understand it for the life of me, I just know how it works.

The same does hold true for some food boluses. My son gets way more insulin at breakfast than he does with other meals. So if breakfast is at 7:30am and all is working smoothly, that is no guarantee that the same breakfast at 10:00am would work as well. Different time of day, different body rhythm that I am not privy too.

Being an external pancreas for someone is a difficult job, there are a lot of unanswered questions that leave you making very important life or death decisions based on a combination of research and intuition.

I’ve heard of mother’s intuition, but this is asking alot.

At a minimumthe person wearing the insulin pump will be getting a continuous flow of  insulin through their pump to keep their blood glucose as steady as possible, this is called the basal rate. Most pumps allow for different basal rates throughout the day to try to mimic the way a working pancreas would put out insulin. Most people find they need different rates for different times of the day. My six year old son, for instance, needs the most basal insulin from 9:00pm to 11:00pm. It may be growth hormones, or sleep that requires this amount of insulin, but whatever the reason, a working pancreas would know what to do, so the person programming the pump (mom in this case)  must do the same.  Throughout an entire day my son has 8 different basal rates all determined by me by checking his blood glucose a minimum of 10 times a day then logging all the numbers and deciding where he needs more or less insulin. I am his working pancreas.

Basal rates are part of a unit. Some smaller people like my son have basal rates such as .150, .325, or .900. That means that over the course of an hour, my son gets .150 units of insulin doled out to him in equal amounts to keep his little body as steady as possible. In a perfect world the basal rate should be set so that the person with Type 1 diabetes does not experience a high or a low blood sugar, just like a person with a working pancreas. Nothing is perfect in the world of Type 1 diabetes, but that is a whole separate post. So lets just leave it as ‘in a perfect world’ the basal rate shoudl keep a person with Type 1 diabetes in a normal blood glucose range of 80-120.

Now to explain the carb bolus, the 2nd B. In an insulin pump there is an insulin to carb ratio. In fact, in my son’s pump there are 6 insulin to carb ratios. Insulin to carb ratio (I:C) is the amount of insulin that is needed to cover a certain amount of carbs being consumed. So for breakfast my son’s I:C is 1:12. So for every 12 carbs he eats (strawberries, toast, cereal, or whatever) I push buttons on the pump to give 1 unit of insulin. So if my son were to eat 48 carbs at breakfast he would get….waiting for you to do the math….if you answered 4 units of insulin than you would be correct. If my son ate 48 carbs at breakfast he would get 4 units of insulin. These are determined the same way. There is a parameter we follow. Two hours after eating the person with Type 1′s blood glucose  should be no more than 50 points higher than when they started the meal. If the person’s sugar is not there, say too high or too than you know to move the I:C ratio to allow for more or less insulin. You achieve the ratios by testing glucose, logging, making changes and testing glucose again at the same time the following day.

Lastly correction bolus, the 3rd B. Insulin Sensitivity Factor (ISF) is the amount of insulin that is needed to lower the blood glucose when it is too high. My son has 3 ISF settings in his pump: 1:100, 1:150, and 1:110. That means, quite simply, that my son receives a certain amount of insulin to get his number in range according the settings that I have placed in the pump. In the morning, my son’s ISF is 1:100. His target blood glucose is 100. If he wakes up with a blood glucose number of 200 he needs to go down 100 points to get to his target of 100. When I put 200 into the pump, the settings that I have created would tell me that he needs 1 unit of insulin to drop him the 100 points. If my son’s blood glucose number was 300 upon waking he would get….waiting for you to do the math…if you answered 2 units of insulin you would be correct.  Trick question. If my son woke up to a number of 225, how much insulin would he get to come back into range?

So back to my original statement that at any given time there is at least one insulin pump setting working on my son’s blood glucose up to a maximum of 3 different settings. Scenario time: If my son were to wake up with a blood glucose of 200, and he ate 48 carbs, he would receive a bolus  for both numbers. 1 unit for blood glucose number and 4 units for his food totaling 5 units. 5 units plus the basal rate for that time of day begins coursing through my son’s blood. Now 2 hours after eating his feels shaky and test his sugar, he tests at 48!!!. Somewhere somehow he got too much insulin, whereas the day before all these settings worked perfectly. So my mind starts to question: Could his I:C need changing? Or maybe it’s the ISF for that time of day that needs changing? Or maybe the basal rate is too high close to the 2 hour point?

Right off the bat there are 3 things that need to be looked at and I only get 1 shot to fix it, the next day at the exact same time. That is not mentioning that exercise, illness, stress, weather and whatever else can affect blood glucose readings, so it may not even be basal, I:C, or ISF that need tweaking. It may just be Type 1 diabetes playing that sick joke on us again.

With all these components affecting 1 blood glucose number it’s wonder when we have any numbers in range. Must be the correct alignment of the moon or something.

1.25

From road trips to testing in school Type 1 diabetes makes everything more difficult. Not impossible. Nothing is impossible for a person with Type 1 diabetes, but everything requires more work than a person without Type 1 diabetes.

Parents embark on road trips with their children all the time. Some road trips are short, and are easier on all accounts and some are long. Really long. 16 hours in the car long. It’s the 16 hours in the car long trip that makes you realize how difficult everyday things become with Type 1 diabetes. There are the obvious preparations that you need to be aware of when travelling long distances with a child with or without Type 1 diabetes. You need to have snacks, drinks, fun stuff to do in the car and be prepared to take potty breaks. Add in the extra of having Type 1 diabetes and you also have to remember low stuff, extra supplies, and extra water. But even that’s not the part that makes it hard to road trip with Type 1 diabetes. It’s the actual hour to hour that gets difficult.

Most parents love love love when their children sleep in the car on a road trip. I am the same. The minute my children fall asleep I know I am good to drive a while in my own silence, no fielding rapid fire questions from the back seat. Yet, having a child with Type 1 diabetes I am unfortunately unable to love it for too long. After 2 hours of sleeping I need to check my son’s sugar. The reason I have to check his sugar is because it is what we do, we meaning parents of children with Type 1 diabetes. We check to see the glucose number to make sure all is okay. It doesn’t matter that the time to test falls at 2:00am on a pitch black highway when his dad is driving 75 miles an hour trying to get home.

So I get the meter, get the flashlight, unbuckle my seat belt, S-T-R-E-T-C-H all the way to the back seat…minivans are long…position the meter, position the flashlight,  find my son’s finger, prick his finger, tuck his hand back in, grab the meter, grab the flashlight, climb back to my seat in the front, buckle my seat belt, and evaluate the number all while not disturbing two sleeping children.

Impossible, no! Difficult, absolutely! Necessary, no doubt!

Type 1 diabetes takes its toll on the children living with it too no matter how hard parents try to make their life easy and ‘normal’. Standardized testing starts in the first grade in our town. The use of the work standardized is already a misnomer when it comes to my son because there is no other first grader in our school that has to check his sugar, evaluate his blood glucose number, treat highs and lows, all while trying to concentrate on taking a test. He is all alone dealing with all this diabetes nonsense. There is no standardized test that can show how hard it is to test when your glucose is sky high or too low.

An explanation of these tests is: A standardized test is one that is administered under standardized or controlled conditions that specify where, when, how, and for how long children may respond to the questions or “prompts.” Well, there you have it folks, there is no such thing as a controlled environment when it comes to Type 1 diabetes. Type 1 diabetes doesn’t know that it’s supposed to stay in range, and non existent during standardized testing times. It doesn’tknow that the minute Type 1 diabetes rears it’s ugly head and makes my son’s sugar go too high or too low that controlled environment goes out the window.

All things are possible when you have a child with Type 1 diabetes, there are no limits. Yet, some things are definitely made more difficult when you have Type 1 diabetes, and standardized testing seems to be one of those things.

My son played flag football at the age of 5 and hated it. I will never know if he really hated football or if he hated that his sugar ran sky high before each practice and then dropped to the inner depths of the earth following practice.

My son loves diabetes camp. I will never know if he really loves going away to camp or if he just loves being in a safe place with a hundred other people just like him, people living with Type 1 diabetes.

My son hated the first few months of 1st grade. I will never know if he just plain hated 1st grade or if a fear of his diabetes not being cared for was the reason for the revolt.

My son doesn’t like to be away from me. I will never know if he just loves me to death (who doesn’t) or if he knows I am his main caretaker and I can handle any diabetes situation that can come up.

My son gets angry at me sometimes. Even tells me  that he hates me. I will never know if this is something that would have happened anyway (lucky me) or if it is because he is angry at his diabetes and he can take it out on me.

My son is a really compassionate little boy. He displays empathy for all different abilities and people. I will never know if he is just a sweetheart or if having diabetes has made his heart grow huge and understand others’ trials and tribulations.

My son is great in math. I will never know if he is great in math because he is just so smart, or if hearing numbers and weights and carb counts at every meal has opened his brain to numbers in a way that is uncommon in little children.

My son hates doing homework. I will never know if he really hates homework, or if holding it together all day: school, friends, enemies, nurse visits, and diabetes duty, is just too much for one little guy and at the end of the day he just needs a break.

And the saddest thing about all this is, my son will never know either.

Until there is one glucose number that comes out of left field, knocks him to his knees like he had just been hit in the belly by a kickball, and then we are back to square one. The point where he is not so sure he can trust his own judgment. That must be a very frightening thought to a six year old boy, I mean if he can’t trust himself with his own feelings than who can he trust.

My son has recently started testing himself in his classroom when he feels ‘off.’  The effort to have him test where and when he feels ‘off’ in school was spear headed by me, but it was my son who took it upon himself to do the actual testing. He does it all himself. He gets his meter out, cleans his finger, and pokes his own tiny hand when he gets the feeling that he needs to test. He does need help determining a plan of action, but it is him and his instinct that are the major components of this team.

It was at this point in his diabetes life that I realized he relies on his own judgment all the time, and when a number sideswipes him, usually a low number, it does rock his world for a few weeks. A few weeks back my son had an unexpected low number when he went to the nurse to test for lunch. It came out of the blue and it was treated quickly and there were no major consequences, or so I thought.

For the rest of that week, and on into the following week, my son instinctively knew to test himself about 20 minutes before that low the week before. In his six year old mind, he was trying to protect himself by testing a little earlier than lunch to catch another low. It took about 10 days of testing at that time, and 10 numbers in range, for my son to stop testing earlier than planned. It took 10 days for my son to feel comfortable again. Ten days for my son to trust himself again with a disease that he has been living with since he is four years old.

So while there were no outward severe consequences of that previous low, no seizure, no passing out, no trembling, there were plenty of internal severe consequences. My son began to mistrust his own judgment, and if you can’t trust yourself with your own disease, where does that leave you?

Seriously though, isn’t that true? When a newborn is brought home from the hospital decisions are made almost hourly that directly affect the well being of the baby. Of course, not every decision is life threatening, but in the eyes of a new mom and dad, every decision feels as if it is. Thankfully though the decision to use a pacifier or not (or whatever the decision is at the moment) really is just a blip in the road of a million decisions you will make throughout the lifetime of this little baby. Some may be right, most will be wrong, but in the end the baby will grow and thrive and go on to live a very fulfilled life, whether or not you let him have a pacifier.

When my son was diagnosed with Type 1 diabetes I again became the expert on his care. We were in the hospital for 2 1/2 days. The nurses knew of my absolute determination to get home so they gave me a crash course on how to care for my son and this totally foreign disease of Type 1 diabetes. Had I known that those 2 1/2 days in the hospital would have been the only time I would ever receive that kind of help from a medical professional I might have not pushed so hard to get home and be on my own. I might actually still be there today, just kidding, kind of.

On my own seems to be a way of life now for me. I am the expert when it comes to my son’s care. I have made every decision on his care since we left the hospital over 2 1/2 years ago. I went to college to be a journalist and then continued my education to become a teacher. No where on that educational track did anyone mention to me anything about the pancreas or insulin or incurable autoimmune diseases, yet I am the expert when it comes to Type 1 diabetes. How did this happen?

I evaluate every number that is in my son’s meter. If there is a pattern of highs and lows I make an adjustment in his insulin pump. These adjustments that I make will hopefully be the right one to prevent another high or low at the said time. If my son’s sugar goes high or low with a certain type of food, it is up to me to evaluate the food and determines what steps to take the next time he eats that particular food. If the settings in his pump are not working anymore, either giving too much or too little insulin, it is up to me to decide to give more or less insulin during the day.

I look at over 70 numbers a week. Some don’t need me to do anything, yet other require me to make a decision to correct the situation. If I were to call a medical profession to talk about all of these decisions I would spend my life on the phone. It is because of this that I am the expert. I may not know the hows and whys of type 1 diabetes, but I sure know my son. I know how much insulin he needs to stay in range, and when he’s not in range I know how to fix it. I am an expert because my son has Type 1 diabetes.

It happens to all of us. If we are not the expert of our child’s Type 1 diabetes than our original dream of  trying ‘not to kill the baby,’ may just not come true. Type 1 diabetes is a serious, incurable, autoimmune disease that can kill, but fortunately for my son (and me) I am stronger and smarter that Type 1 diabetes, and I love my son more than anything, and it is because of that love than I am an expert.

This post will not be about his poor bedside manner. Or the awful almost cringe-worthy way he displayed a woman with Type 1 diabetes and her complications as a scare tactic for people ignoring their own Type 2 diabetes. Or the way he is so omnipotent in his own mind that he has the audacity to take on such huge diseases as Type 1 or Type 2 diabetes without having an endocrinologist right at his side as he spoke. No, this post is about quite simply a name. The inability (or ignorance) of Dr. Oz to use the name Type 2 diabetes when he is talking solely about Type 2 diabetes allows for too much confusion when it comes to my son’s disease, Type 1 diabetes.

Something that Dr. Oz said really stuck with me. He said, “the amount of insulin you have to take every day depends on “how bad” your diabetes is.”  While I will not say whether that is true or not for Type 2 diabetes, I will say that is an absolute, unequivocal lie when it comes to Type 1 diabetes. All people with Type 1 diabetes take insulin to live. There is no such thing as good, bad, worse, severe, brittle, pre-, or a little Type 1 diabetes. Type 1 diabetes is what it is. It is the body’s inability to produce its own insulin. Things are happening in a person with Type 1 diabetes body that stop the production of insulin. All cases of Type 1 diabetes require insulin from the minute they are diagnosed. There is no degree of ‘how bad’ that determines whether you take insulin or not.

You may be asking yourself why this bothers me so much. It bothers me because my son lives with Type 1 diabetes through no fault of his own, yet people still feel the need to spew their false understandings whenever they meet us. Strangers see that my son has an insulin pump and they are compelled for whatever reason to say, “Oh he must have bad diabetes.” Thank you Dr. Oz for continuing this myth. No, my son does not have bad diabetes, he has Type 1 diabetes. He needs insulin to live.

Or when yet another self-proclaimed expert on diabetes stops me at a food court and says, “You know your son wouldn’t have to take insulin if you didn’t give him that ice cream cone,” to that I say, thank you again Dr. Oz. If you had only pointed out that all people with Type 1 diabetes need to take insulin regardless of what they eat maybe, just maybe, one single person could have been educated properly as opposed to being  fed more misconceptions.

I know of no other disease that gets lumped with other diseases simply because experts are too lazy to use the proper terminology. When someone is diagnosed with cancer, does the doctor leave it at that? I would imagine a person receiving a cancer diagnosis would like to know if it were pancreatic cancer or skin cancer. I would also imagine that a person receiving a diagnosis of pancreatic cancer would be surprised to be asked from a stranger on the street if they planned on using sunblock to protect their skin now. Sure, aside from being awfully rude and presumptuous, it just doesn’t make any sense.

Type 1 and Type 2 diabetes deserve the same respect. The people living with Type 1 diabetes, the autoimmune disease, deserve the proper name be used even more than the actual disease. The misconceptions that are hurled at my son (and me) are rude, presumptuous, hurtful and in 100% of cases outright untruths that make no sense.

So in answer to my original question, what’s in a name? Everything, Dr. Oz, everything.

What I find so ironic about this disease that requires so much intellectual ability, is that when the person with Type 1 diabetes has fluctuations in their blood glucose number, either high or low, they are unable to think clearly. Unable to do the one thing that keeps them healthy…think.

My son is only 6 years old, so he doesn’t make any diabetes related decisions yet. He does however have to make plenty of decisions when it comes to school. He is currently learning how to add double digit numbers and to read. Yes, read. Something that requires tremendous concentration and memory. Most times he handles school and learning like a champ. He is a very bright boy who can articulate well and grasp new concepts quicker than most 6 year olds that I have met. That is until diabetes steps in.

When diabetes rears it’s ugly head and throws a curve ball such as a high or low glucose reading, my son is no longer the self-sufficient learner that he tends to be. When his numbers are too high or too low he cannot think clearly, he cannot make decisions properly, he cannot retain information presented to him. It is the old Maslow’s hierarchy of needs that takes over. When my son’s sugar is rising or dropping he goes into survival mode. His body gets overcome with the symptoms of the high or the low sugar and nothing other than remediation of the situation is of concern.

When my son’s glucose goes to low he gets shaky, dizzy, sees spots, gets weak in the knees and becomes very tired. Learning how to add 16 +30 is the last thing from his mind. He needs to survive the low, treat the symptoms that are making him feel so bad, and knowing that answer is 46 is not going to do anything to help the low.

Same goes for when my son’s sugar is too high. The first time I witnessed this was about 7 months after diagnosis. In the process of picking him up from preschool I asked him to get his paper off the table. All he had to do was identify his name at the top of the paper out of 10 other names on the table. A task that he had successfully completed every day since the first day of preschool. My son looked at me and said, “I can’t find my name, can you do it.”

I knew something was not right. I grabbed the paper and my son and ran to our truck to test his sugar. Lo and behold his glucose reading was about 500. Above 500!!! With a glucose reading that high my son was unable to read his own name. HIS OWN NAME. Now you tell me how he is supposed to learn to comprehend a story about Penguins or Martin Luther King Jr. when he can’t even read his own name when his blood glucose is too high.

Now having diabetes is not an excuse for not learning in school, but it sure doesn’t help the learning process when the diabetes is not playing a fair game. Type 1 diabetes doesn’t care that my son cries when he gets a math problem wrong because his body was feeling right because of a dropping number. Type 1 diabetes doesn’t care that when my son’s sugar is so high all he can think about is how his head feels like it’s splitting in two, and not that penguins can’t fly.

Type 1 diabetes doesn’t care, but I do, and I hope my son knows that.

Children and adults that get Type 1 diabetes are usually moving right along in their life when all of a sudden something is not right. Either they get a flu-like illness that won’t go away, or they start losing weight at an alarming rate, or they are never satiated of thirst, or they use the bathroom more times than they can imagine in one hour, but whatever it is and however it happens, it comes on in an instant. And once these symptoms start there is no plan of action other than insulin that can help the situation. There is no slowing down of Type 1. Once the T cells attack and decimate the beta cells in the pancreas there is no exercise or healthy eating that can turn the process around. It is a one-way ticket to having Type 1 diabetes.

The same holds true for severity of Type 1 diabetes. The media is keen on saying that the diabetes was the ‘severe kind of diabetes’. All cases of Type 1 diabetes are severe. All people with Type 1 diabetes take insulin to live. Whether they wear a pump or take shots, or test 4 time a day or 12, it doesn’t matter. Every single person with Type 1 diabetes survives on life support, insulin, and manages a chronic illness on a daily basis, that could kill them in more ways than one.

Honestly, I think anything that can kill you while you sleep is severe.

So the next time you see a child with Type 1 diabetes understand there is nothing he (or his parents) could have done to prevent this dreaded disease. And there is nothing he can do to get rid of it either. There was no doctor’s visit where someone gave the heads up that this disease was coming our way. It comes out of the blue and stays for the duration.

Giving insulin for food doesn’t mean a person has severe diabetes, it means he has Type 1 diabetes. All people from the second they are diagnosed need insulin to cover their carb intake. So whether they are eating a bagel equaling  70 carbs, or a whole wheat turkey sandwich equaling 30 carbs, or a piece of candy equaling 11 carbs they still need to take insulin.

So ‘pre-diabetes’, ‘severe’, ‘brittle’,  and whatever other word they use to spice up a story are all words used by the media to fill up airtime about a disease that they really know nothing about. Type 1 diabetes is it’s own disease, different from Type 2 diabetes, and it should be treated that way.

You know how it is when your kids are little, you gravitate towards the moms and dads in playgroup that seemsimilar to you and your style. You may sit near the mom that sits on the floor instead of the chair during the book reading. Or you may join the dad at the food court that is feeding his kids the same ‘junk food’ meal as you. Whatever it may be, you find that you gravitate towards the parents that are most similar to your style. It’s no different when it comes to diabetes.

There are so many ways to live successfully with diabetes, but there are a few things in diabetes that are set in stone. People with Type 1 diabetes have to take insulin, that is a no brainer. People with Type 1 diabetes have to check their blood glucose in order to survive. After those two main things, families have choices when it comes to diabetes.

Families can choose to use an insulin pump to deliver insulin or give shots. Families can choose to weigh food or read the labels, or both. Families can choose whichever blood glucose meter they want, some choosing 2 or 3 for one person. Some families choose to send their kids to diabetes camp and some do not. Some people believe that you absolutely have to test a child overnight and some people believe you absolutely do not have to overnight test. Some people limit the types of foods their child with Type 1 diabetes can eat, and some allow all types of food. Other families follow their doctor’s orders implicitly, while others, under the supervision of  a doctor, tread their own path of care.

The problem with all of these choices and different parenting styles is that everyone thinks they are right. And the bigger problem within that is that everyone IS right. Each one of us does exactly what we think is right for our children. While it may not be the best solution for one family, it may be the only solution in another. Finding friends amongst all these different styles is difficult. It is much easier to be friendly with a person that follows a similar way of care as you do, mainly because we all think we are right. It is easier if the styles jive so that you know where each one is coming from.

So as in life, you have to muddle through all the different people you encounter, just to find that one person that you can call your friend. And I can say, finding that friend is so worth it when it comes to living with Type 1 diabetes. Living with Type 1 diabetes sucks, but to find a friend that follows the same groove as you, well, it makes it just a little less sucky.

I know many people whose children have Type 1 diabetes. I met most of them through the website www.Type1parents.org. It is a forum where parents of children with Type 1 diabetes and adults living with Type 1 diabetes can go to discuss, well, really anything, but mostly diabetes related questions. And I can honestly say when a question is asked as many as the number of people that respond there will be that many different answers,  all with different solutions that work.

With all of this individuality there comes lots of justification. Justifying from a parenting perspective is hard to do. Parents don’t like to justify choices such as bedtimes, punishment tactics, or homework routine. We think we are doing what is best for our children and that should be enough. Well the same goes for caring for a child with Type 1 diabetes, but it’s not that simple.

Every 3 months we have to see our pediatric endocrinologist. And every 3 months, in a very caring and professional way that endo will go over our blood glucose charts, our pump setting, our insulin usage and discuss our choices. Essentially having us justify our decisions over the past 3 months. Now this is not meant to put parents on the spot, but in essence it does. And it stings. Like salt in a wound.

Every day when I lay my head down to sleep I know in my heart and soul that I have done every single thing that I could have done to make all the right choices when it comes to my son and his diabetes. Not that every decision I made was the right one, but every decision was thought upon and deliberately decided in the best interest of my son. Mistakes are made, and then the following day I attack each situation with lessons learned from previous days. The more I know the more I owe. The more I know about diabetes, the more I owe it to my son to make the most intelligent, informed decisions based on his care every second of every day.

Justify, so be it. But rest assured whether all my decisions were right or not, they were done with only the best intentions. The best intention of keeping my son happy, healthy and alive. Not a second goes by where I don’t try my absolute hardest to succeed. So far so good.

I know many people whose children have Type 1 diabetes. I met most of them through the website www.Type1parents.org. It is a forum where parents of children with Type 1 diabetes and adults living with Type 1 diabetes can go to discuss, well, really anything, but mostly diabetes related questions. And I can honestly say when a question is asked as many as the number of people that respond there will be that many different answers,  all with different solutions that work.

With all of this individuality there comes lots of justification. Justifying from a parenting perspective is hard to do. Parents don’t like to justify choices such as bedtimes, punishment tactics, or homework routine. We think we are doing what is best for our children and that should be enough. Well the same goes for caring for a child with Type 1 diabetes, but it’s not that simple.

Every 3 months we have to see our pediatric endocrinologist. And every 3 months, in a very caring and professional way that endo will go over our blood glucose charts, our pump setting, our insulin usage and discuss our choices. Essentially having us justify our decisions over the past 3 months. Now this is not meant to put parents on the spot, but in essence it does. And it stings. Like salt in a wound.

Every day when I lay my head down to sleep I know in my heart and soul that I have done every single thing that I could have done to make all the right choices when it comes to my son and his diabetes. Not that every decision I made was the right one, but every decision was thought upon and deliberately decided in the best interest of my son. Mistakes are made, and then the following day I attack each situation with lessons learned from previous days. The more I know the more I owe. The more I know about diabetes, the more I owe it to my son to make the most intelligent, informed decisions based on his care every second of every day.

Justify, so be it. But rest assured whether all my decisions were right or not, they were done with only the best intentions. The best intention of keeping my son happy, healthy and alive. Not a second goes by where I don’t try my absolute hardest to succeed. So far so good.

As there still is no cure (patiently tapping my fingers waiting) and my beautiful son is still living life to the fullest with this crappy disease otherwise known as Type 1 diabetes, you can be sure Type 1 Demystified will be full of new posts, new adventures, and of course, trial and tribulations for 2010.

Thank you again, for without you dear subscribers, this blog would not exist. You know the old adage, if someone writes a blog and there is no one to read it, then is there really a blog at all…or something like that.

Leslie

These are the normal days.

Now we add in special days like school parties, birthday parties, holidays and Christmas cookie baking day in our home, and it is made clear to me that if I want my son to have as normal life as possible, I need to let loose, just  a little, for his sanity. On special days we do our best to keep my son’s sugar as in range as possible, but there will be some ups and downs with the extra snacks or treats along the day.

Baking cookies is a prime example. It’s practically an American right that you taste the cookie dough before it is cooked. I have no idea how many carbs are in a small spoonful of raw cookie dough and I have no desire to know. I simply dole out the spoonfuls to both of my children. That’s it. No glucose test. No carb count. That’s it. Just continuing the glorious tradition of tasting the raw cookie dough.

Letting loose. We can always check my son’s sugar later and correct with insulin if need be. Most times the excitement of the holidays runs his sugar a little on the lower side, so a spoonful of cookie dough doesn’t have much impact. But letting loose (just a bit) has all the impact in the world.

For a brief moment in time, my son is exactly like his sister, just enjoying a holiday tradition without carb counting or glucose check. Yes, Type 1 diabetes takes a great deal of management and consistency, and that is a necessary life saving practice needed for everyday. It’s the special days, where along with management and consistency, you add in a little spontaneity and loosen the grip just a bit, and you realize you can do this. We can do this. Type 1 diabetes is always there, holidays and all, but we don’t have to let it take center stage.

He never makes excuses for anything when it comes to diabetes. He does not miss school because he has Type 1. He does not miss gym class because he has Type 1. He does not miss any obligations because of diabetes. There are times, however, when the Mama Bear in me comes out in full force and I must step in and demand that we make an exception because of diabetes.

Every night I check my son’s sugar while he sleeps. His sugar usually gets checked around midnight and 3:00 am, just to ensure that his numbers are staying steady, and if not some intervention can take place before it becomes a serious problem. These nightly checks usually have no impact on my son’s sleep. He sleeps through finger checks as  well as site changes. He is a real trooper.

It is the nights where his sleep is severely altered that I must step in give my son the opportunity to acknowledge that sometimes diabetes does affect our day to day. Some nights when I check my son’s sugar it is too low. In order to get the number back in range I have to feed him some type of sugar. That can be anything from a glucose drink (our favorite) to a juice box, or yogurt drink, or a small piece of candy. One time a night of this is disruptive enough, but sometimes for whatever reason, my son may dip low 2 or 3 times in one night. So that is 2 or 3 times when I am giving him juice to drink, or a snack to eat instead of him counting sheep like most kids.

Sometimes when my son dips low he gets very very hungry. So along with getting glucose checks and sugar in the middle of the night he also needs a snack.

Do you have the picture in your head yet?

2:30am…Mama sneaks in to the bedroom, puts the tiny flash light in her mouth, and checks the sugar. Meter reads 62. Mama runs to get the glucose drink, places the drink in the sleeping boy’s mouth. He slowly starts to wake up because he is starving from the 62. He drinks the drink, and then realizes he is hungry. We both go into the kitchen for the boy to eat salami and cheese for a 2:30am snack. Definitely not like most homes.

This is where Mama steps in. Yes, we have no excuses when it comes to diabetes, but this is serious. A six year old boy cannot go to school and function properly on such terribly interrupted sleep. He needs sleep to learn, grow and stay healthy. Diabetes doesn’t understand that, but his Mama does. That is when we shut off the wake up alarm and let the boy sleep in until he wakes up on his own, rested and ready for the day.

We have no excuses when it comes to diabetes, but some days enough is enough.

Not in the ‘woe is me’ kind of way. We are past that. Sure I mourn for my son that he has to deal with Type 1 diabetes every day of his little life, but we do not pity ourselves for dealing with it, we just deal. The part that doesn’t get any easier is the day to day dealings that no matter how much you wish them away will never be gone.

Every day my son has to check his sugar over 10 times a day. In 2 and 1/2 years that is over 9,000 finger pricks. 9,000! For the first 8 months of having Type 1 diabetes my son had to have between 4 and 10 shots of insulin a day depending on the foods he ate and the range of his glucose numbers. After the shots, we switched to an insulin pump, so for almost 2 years we have changed his insulin pump site every 2 days. Every 2 days for almost 2 years we changed his site which works out to be about 365 site changes. 365!

Dealing with Type 1 diabetes doesn’t get any easier because it is relentless in it’s attempt to cause as much unrest as possible. Not a finger check and blood glucose number goes by without me thinking of which plan of action is necessary. Some checks nothing may need to be done, but I still have to quickly evaluate that number and determine if it is in range. It is constant thinking, evaluating, adjusting and checking.

It doesn’t get any easier because Type 1 diabetes is different every day. If my son eats the same breakfast every day for 7 days there is a good bet that his numbers will still be different after each meal because of outside sources such as weather, illness, growth, stress, equipment malfunction or whatever.

It is like living in the movie Groundhog Day with Bill Murray. We wake up we deal with Type 1 diabetes. It never goes away and it never gives us a break. We cannot go an entire day without testing my son’s sugar. We cannot go an entire day without counting carbs or giving insulin. He would die if we did that. Literally.

That is why living with Type 1 diabetes doesn’t get any easier. There is no time to take a break. There is no reprieve from the glucose checks, the carb counting, the dosing of insulin. It gets worse over time because you want to forget about it for a while and you just can’t. Diabetes vacations with us, celebrates holidays with us, gets one year older with us on birthdays, joins us when we are sick, and follows us to school. Too bad Type 1 diabetes isn’t good luck, we would all love to have such good luck following us around all the time.

I know many people that have lived successfully with Type 1 diabetes for over 37 years, and I know that my son lives a very full life with it too. But I do also know that my son would give anything to just eat a meal without checking his blood glucose first or dosing insulin. Or go out to gym class without having an extra snack to avoid going too low. Or sleep through the night without any finger checks. Or go to school without worrying who will help him if he goes low and cannot take care of it himself.

Diabetes never takes a break, so therefore neither can he.

Now after that disclaimer, onto the point of this particular post. When we go out to dinner at a restaurant my son orders his own food. He is quite adept at it for someone who only goes out about once a month. He orders his meal then he always says, “And a diet soda for me please.” Plain and simple. The boy orders what he wants. Now getting what he wants seems to be the issue for many servers out there.

Once my son’s drink is placed in front of him I quickly take a sip. I can tell the difference between diet and regular soda so I am the taste tester. Most times it is correct, he is given a diet soda. It’s the times when it has not been correct that make me nervous. A 12 ounce cup of regular Coke has 39.9 carbs in it. If my son unknowingly drank that soda without giving himself any insulin that soda would raise his blood sugar to over 500. A normal blood sugar is between 80 and 120. Something as simple as the wrong soda can raise my son’s blood glucose to dangerously high levels which could lead to vomiting, coma or death. Seriously. I’m not kidding.

Now some people say that he should tell the servers when he orders that he has Type 1 diabetes and that he absolutely must have a diet soda. We have taken that route yet. I allow my son to order and if the wrong soda is placed in front of him I simply tell the server that he ordered a diet soda and to please get him a new one. Sometimes my son will tell the server, “I have Type 1 diabetes and I drink diet soda,” but if he does do that then that is his choice.

I choose not to tell the server because in my experience it doesn’t help. They have no idea what Type 1 diabetes is and some will even argue with me that there are no carbs in regular soda (I’m not kidding, someone actually told me that). If I am out to dinner with my family I want to enjoy the meal, their company and not have to spend 15 minutes of my time arguing my choice of drink for my six year old son.

Bottom line, there are enough medical conditions out there that require special exemptions at meals. Servers need to do their job and do it well. Sometimes giving the wrong soda may not be a matter of taste, it may actually be the difference between life or death.

When we all sit down to eat my son is the first to receive his appetizer because he just can’t wait. Of course, all of this happens after we have checked his blood glucose. What, the six year old in your house doesn’t check his glucose before eating? The six year old in our house cannot eat a bite of that fantastic shrimp cocktail appetizer until his glucose is checked. It just takes a few seconds, but it feels like an eternity when your mouth is watering   just at the sight of the shrimp.

My son sees scrumptious shrimp and cocktail sauce sitting in front of him. I see carb free shrimp and a 15 carb serving of cocktail sauce. My son eats and I bolus (give insulin) through the remote that is wirelessly transmitted to the insulin pump that he wears 24 hours a day…even on holidays. Diabetes doesn’t take a day off.

Now it’s my turn to eat my shrimp, my carb free and 15 carb cocktail sauce. Oh wait, I don’t have Type 1 diabetes, no need to count my carbs, but it just happens now. All food has become some carb amount for me.

“Can your son have more?” someone asks.” Of course”, I say as I try to count the carbs of the cocktail sauce as it’s dripping off of each shrimp. All done. Great. Time to take a break from eating…and counting.

Round two. Check the boy’s blood glucose again. We need to make sure we were close enough on the counting of the shrimp cocktail carbs that his glucose is somewhat in range. Too high, we need to give more insulin. Too low, we may need to eat something with sugar in it first to help the glucose number stay more steady.

The table is set in nothing short of a feast. There will be turkey, gravy, mashed potatoes, sweet potatoes, green beans, broccoli, stuffing, biscuits, cranberry sauce and Nannie’s ever famous sweet potato bake with roasted marshmallows on top. As my son makes his plate of turkey, gravy, green beans, cranberry and a biscuit or two or three his mouth is visibly watering. His eyes are getting bigger and bigger with each new addition to his plate.

As my son’s fork is poised and ready to inhale all this delicious food, my head fills with numbers. Quickly adding the gravy, the green beans, cranberry sauce and the biscuits getting about 48 carbs for the first serving. Adding 11 more carbs each time he reaches for another warm biscuit.

Eating. Adding. Adding. Eating. Bolusing. Eating. Bolusing. Bolusing. Checking.

This is all before we even get to the apple pie, pumpkin cookies and ice cream.

Thanksgiving really makes you think about all you have to be thankful for. First and foremost I am thankful for my family. I know how truly lucky I am. I am also thankful for my son’s insulin pump, his life support. I am also thankful for the Internet which keeps me on top of the latest diabetes info. I am thankful for my own intellect which helps me keep track of the carbs in his meal to help keep his blood glucose as close to range as possible.

Diabetes affects every part of your life even holidays, no matter how hard you try to pretend that it doesn’t.

I have to make decisions regarding my son’s care many times a day and night. Some decisions are easy. If his number is out of range on the high side I know to give insulin. If his number is out of range on the low side I know to give him some sort of sugar. Oh if only all my decisions could be that cut and dry. The harder decisions are the ones that leave me guessing as to whether I made the right decision and and in turn have me treating my son like he is a guinea pig in his own personal clinical trial.

For every meal my son has what is called an insulin to carb ratio. That is the amount of insulin that he receives for the amount of carbs that he eats. For breakfast my son receives 1 unit of insulin for every 15 carbs that he eats. The way to test if this works is if his blood glucose comes back into range within the next 2 to 3 hours.

If at his next glucose test his number is on the high side I can speculate that the ratio may need to be made tighter (or bigger for my mathy friends), where I give more insulin for each carb, but that is just a speculation. Speculation because it could also be a bad site, too little basal, slowly digesting food, or too small of a correction factor.  Herein lies why my son is like a guinea pig. I have to run trial after trial to figure out how to get that said number in range. It is then when my son has to endure extra blood glucose checks, like a guinea pig, to determine if the changes being made are heading him in the right direction.

The kicker is this happens multiple times a day. Every time that my son tests his sugar and it is out of range, either high or low, I have to then speculate where that number came from and how to fix it for the next time. This process can take weeks. No kidding. Weeks! With all the outside factors such as growth hormones, illness, food, basal rates, meal/snack ratios, and correction factors, it can take weeks before we actually figure out what is causing the pattern of high or low sugars.

It is a glorious moment in the life of a person with Type 1 diabetes when the decision you made to fix a pattern actually works quickly.

It’s the long drawn out trial and errors that make it really hard to not get angry at diabetes. It’s the time that my son has to waste of his little six year old life dealing with high glucose, low glucose and many many blood checks  that really make you hate diabetes.

My son is a boy, not a guinea pig, and he should not have to endure one more second of the trials and errors of Type 1 diabetes. Type 1 diabetes has wasted enough of his time, and enough is enough.