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.

My son was off for about 6 months prior to diagnosis. He was whiny, angry, tired, and cold; it almost felt like he had PMS for a 3 1/2 year old boy. He was so yucky to be around that I thought that our fun life was over at 3 1/2. He used to cry and say he didn’t want to turn four; he didn’t want to go to school. I actually thought he was depressed. Over what, I had no idea, but that’s how it felt living with him. Fast forward to 2 weeks after his 4th birthday and he peed the bed. NEVER did that once. Then he started asking for drinks. Then started demanding drinks and he started peeing all the time. Every 20 minutes. I immediately thought diabetes (don’t know why) and started doing research. I asked moms on an Internet bulletin board if they had any stories about diabetes and some did. I kept the knowledge on the back burner. During this time frame I made his 4 year old visit for 7/25/07.

The night before the visit, my son got up to pee 6 times. I mean really pee, like he hadn’t peed in days. Well the morning of the visit (my husband was home to watch the kids for a checkup for me too); my son comes to his dad and me and tells us he’s hungry. I look at him, his lips are blue, he is completely grey and shrunken, like someone had sucked all the life out of him. I spell ‘hospital’ to my husband, and told him to quickly give him juice (I thought he needed sugar for some reason) and I made him pancakes. He perked right up with the juice and pancakes.

At the visit at 3pm I told the pediatrician to test his urine for diabetes (I didn’t know Type 1 or Type 2 yet). We go through the whole visit and the doctor never mentioned the urine test that she did. I had to ask in the final few seconds of the meeting. This is where is gets annoying-Dr. says “you’re going to have to go see an endocrinologist.’ I tell her I don’t know any, she says maybe the girl up front can find you one. Okay, I yell to the girl up front that while she’s looking for an endo for me to make the appointment IMMEDIATELY and I would drive anywhere on the East Coast (I knew in my heart my son was dying). Dr. says to the receptionist, “Oh and let me talk to them, maybe it will get you in sooner.” Endo says come to ER immediately (of course) and we drove there on autopilot, only stopping home to get clothes, toys, kiss daddy and sister. On the way to the ER I make plans for my mom to come and stay with my daughter, so that my husband could come to ER too.

The really annoying part…his sugar was off the charts, over 1,000, in that doctor’s office that day. We didn’t need that pediatrician to talk to the endo. They were waiting for us in the ER.

My son’s sugar registered 800 in the hospital after they had started insulin. No ketones. We were there for 2 nights and 3 full days. They gave me a crash course in care because I kept asking to leave. I started giving insulin the first full day there. I also started checking blood that fast too. I needed to prove to them I could take care of him (prove I could care for MY SON!), so I gave myself the first shot. They really tried to get me out as fast as possible and they did.

Nurses kept coming in to meet the mom that saved her boy from DKA.

We’ve been doing really well with it.  Everyday we learn a little more, and it has not stopped our way of life. We deal with D (diabetes) all the time, and it has incorporated itself into our world. Our world didn’t stop because of D.

You may begin to notice that when the child cries unexpectedly and you check his sugar it might be low. So the next time you hear the child crying for no apparent reason you may check his sugar again more prepared that the number may be low or dropping. It just takes time, practice and instinct.

My son typically gets weepy when his number is on the lower side or dropping. An ordinary task such as going to brush teeth may illicit a response such as, “Idon’twannabrushmyteeth,” as an all one word whine and then I know to check his sugar.

There is a fine line though that does take time to learn. Not every time my son cries is he low. He may be crying because he is six and sometimes six year old boys cry. He may cry if he is not allowed to watch a certain television show. I know after almost 2 1/2 years of dealing with Type 1 diabetes that some crying is just crying. He cries when he is hurt, sad, embarrassed, and sometimes low. The hard part for caregivers is learning the difference so you can avoid testing his sugar or over treating a number unnecessarily in one day.

I have asked school personnel to treat a low on the spot then contact the school  nurse to give them the next step in the plan of action. There have been times when my son has cried in school and they have treated with a Starburst on the spot and we were able to determine that his number had been on the lower side. So giving the Starburst was the absolute right choice.

Then there are the other times.

My son cried the other day because he thought he forgot his library book. They gave him a Starburst, and he stopped crying, because what six year old wouldn’t stop crying if you pop candy in his mouth. While I completely understand the thought behind the Starburst and I do appreciate that they are following my plan to keep my son safe, I do wonder when that fine line with be learned.

And it may never be learned, and that is something that I have to understand. Unfortunately you cannot teach people instinct. There will be people that are really tuned into my son’s needs and others that follow the plan to make sure he is safe. Either way is fine. As long as my son is safe.

When Type 1 diabetes is thrown into the loop regular occurrences such as colds and virus become so much more. It becomes ketones and erratic blood sugars and lots and lots and lots of finger sticks. Sure we still have to watch the fever and treat the symptoms of stuffy noses and coughs, but it becomes so much more than that.

Ketones can kill, plain and simple.

In people with Type 1 diabetes ketones are mainly caused by lack of insulin. Ketones are when your body body burns stored fat for energy. In a nutshell, ketones are not good, EVER. Most times you can keep ketones away by providing the proper amount of insulin. But then of course, in times of illness, all bets are off. Ketones can appear at the first sign of illness. So along with fighting stuffy noses, and fever, people with Type 1 diabetes need to fight ketones as well. That is very very hard to do. It’s like fighting 2 completely different battles within the same body.

The way to get rid of ketones is to give more insulin. Most times they are not impossible to get rid of at home, but many times especially when they are stubbornly attached to an illness they have to be dealt with in the hospital. So it’s not the stuffy nose or fever that requires the trip to the ER, it’s the ketones. Remember ketones can kill, let’s not forget that.

Then there are the extra finger sticks. Don’t get me started. My boy already endures 10 or more finger sticks a day just to stay healthy on a regular day. Throw in an illness that causes high, erratic blood sugars and ketones and the finger sticks become exponential. During an illness it is not unheard of to check every hour on the hour. Do the math, that’s 24 finger sticks in one day.

My son only has 10 fingers just like most every other six year old.  Twenty four finger sticks in one day, plain and simple, hurt. They hurt one the actual finger and they hurt on the inside.Think about the last time you had the flu, or head cold. Now think if every hour on the hour someone was going to stab your finger with a needle just enough to make you bleed. Wears on you. Inside and out.

Why check so much you may be asking yourself. We check because it’s the only way to know what is going on inside my son’s body along with all the symptoms on the outside. Tylenol can help a fever, but it does nothing for high blood sugars, believe me I wish it would. The only way to tell if more insulin is needed is to to a finger stick. Insulin helps lower the blood sugar levels and helps rid the body of those ketones. Finger sticks are the window to my son’s blood.

And plain and simple during a time of ordinary illness it is not unheard of to see numbers of 300 or higher. All in the day in the life of a child with Type 1 diabetes when he is hit with the sniffles.

So the next time something seems ordinary to you take a moment to think how lucky you are. Ordinary is just that, ordinary, and that’s not so bad.

It is when he is sleeping. It is when he is quiet. The dark of night and the silence of quiet time fill of pit of fear in my stomach that can only be explained by using the word terror.

When my son sleeps I already check his sugar one or two times a night. Usually I check around 2:00 am and sometimes at 5:00am depending on the 2:00am number.  Then I am usually good until his usual wake up time of 7:00am. It is on the weekends, though, when he is snuggled up tight with his dad and his body wants to sleep late that cause me the most anxiety.

I don’t know if my son is sleeping late because he is tired and cozy and loving every minute of his rest, or if he has dropped so low that his body is shutting down and he is unable to wake up even if he tried. I know I can go in there and test his sugar and sometimes I do just that. Sometimes I can work myself up into such a fear that I have no choice but to go in and check. That usually wakes him up and then I feel bad. I feel bad for disturbing him, I feel bad for overreacting, I feel bad he has to live with this awful disease.

Wow, what a way to start a morning.

Then there are the other times when my son is quietly watching TV in the downstairs room. While I relish in the quiet for a few minutes, after a moment or two I start to get nervous. I’ll nonchalantly call downstairs, “Buddy, whatcha watching?” No answer. “Hey buddy, whatcha doin’?” No answer. Until finally I am screaming for the whole neighborhood to hear, “Answer me!” and then I finally get, “I’m watching Johnny Test.”

Unfair, yes, to both of us. I should be happy when my extremely active and creative six year old wants some rare quiet time. I should be able to be at peace when he is calmly watching TV like most kids. Yet, that is one other thing that Type 1 diabetes has robbed me of, peace in the quiet.

Unfair to my little boy, because what six year old doesn’t want to sleep late and watch TV without his mom coming in and pricking his finger or screaming for him to answer.

Sleeping late and quiet time should not bring up a level of terror in me equivalent to a house fire or home invasion, but unfortunately Type 1 diabetes has done that to me. I fear times in my home that most people find the most relaxing.

I already know the answer to my original question. Will the fear go away? Not as long as Type 1 diabetes is still around.

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.

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.

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.