The Life of a Super Hero

During the month of November Jack said to me on more than one occasion that he was a super hero. He would say "Mom, I'm super Jack-Jack, and you are super mommy." This is significant to me because on December 16, 2013 Jack was diagnosed with Type 1 diabetes and really did become my super hero.

It has been a whirlwind the past couple of weeks and I have had a lot of people asking me questions. I have been meaning to write this post for a while to help answer some of these questions and I am just now getting to it. I am by no means an expert about diabetes. With this disease you learn by fire. We are still in the fire, so I am still learning something new everyday. There is a lot of trial and error involved and a huge learning curve involved. I'm sure by the time I get it all figured out Jack will be ready to do it all on his own.

Hopefully this post will help educate some of our family and friends on diabetes.  If nothing else it will help me to write down and review the information for myself. I honestly didn't know anything about diabetes before Jack was diagnosed except for that it involved high blood sugar and insulin.

Here are a few of the questions that I have been asked:

What is Diabetes?
I thought this video from youtube would be better at explaining diabetes than I could. It is 2 minutes long and explains it in a way that my 6 year old can understand.

Right now Jack is in what they call the "honeymoon" stage where his body is still producing some insulin, although it is a guessing game to know how much. My Dr. described it as wringing out a wet rag. You never really know how long you will be able to get a few drips out. It can last for weeks or months. This is why getting his dosages correct right now is kind of a guessing game.

What are the signs for Diabetes?
Of course when I talk to other moms about Jack being diagnosed they want to know what the signs are so that they can make sure their own children don't have any symptoms. It is something that can really sneak up on you. Especially in toddlers because a lot of the signs are common for really any toddler.

- increased thirst
- increased (or decreased) hunger
- increased urination
- weakness or fatigue
- weight loss
- blurry vision
- fast, deep breathing
- slow or confused thinking

The last few symptoms come when your blood sugar has reached its max. Your body starts breaking down your fat causing you to go into what is called DKA (Diabetic Ketoacidosis). It can be a very scary thing and these kids are very sick.

Fortunately, we caught Jack very early. Looking back I am not sure how long he was really showing signs of diabetes. The only signs that I saw were the week before his yearly check-up. He was always asking for water, peeing about every hour, waking up at night in a panic to use the bathroom, and fighting us at every meal to get him to eat.

I have told many people this, but I honestly think that the spirit was prompting me that something wasn't right and told me to ask questions. Two, almost 3 yr olds, are like this, so I have no other reason why I was lead to get him checked out. One night as Shad and I laid in bed my mind went to a conversation that I had with one of my friends whose son was diagnosed recently. I asked her what the signs were and she talked about frequent urination and loosing weight. Shad and I looked up all of the symptoms of diabetes, and although I didn't think they sounded like Jack at the time, I couldn't get the thought of diabetes off my mind.

This is what led me to ask the Dr. at his appointment a few days later. This was the first time that we had seen our new pediatrician and I wasn't sure how seriously he would take my concern, however, he immediately had him tested in the office and his A1C (a sample of blood that can tell the doctors what your blood glucose has been like in the past 3-4 months) indicated that he was indeed diabetic. He was an 8.7 where as a normal A1C is around 6.5

Honestly I was in a little bit of shock, especially when the doctor told us to pack our bags and get down to primary children's hospital in Salt Lake that night and expect to spend the next 2 days there. As we left the office I just kept thinking "but he's not sick." However, I heard from a number of people how lucky we were in finding out in this way. Unfortunately a lot of cases go unnoticed until something serious happens and they have no choice but to go to the hospital. I was able to finish my laundry, let Jack finish his nap, and have dinner with my parents before we were admitted into the hospital.

I wasn't always a believer in getting those yearly check-ups done with my children. I always did, but they were always healthy so I never worried. Now I know just how important they are. What if I would have put it off or not done it at all? What if I wouldn't have followed the promptings and asked questions? The timing couldn't have been any better.

So, my advice to all of the moms that have asked me if they should get their children checked because of things they have noticed, I would say "it doesn't hurt." Ask questions. All it takes is a urine test or a little finger poke for a peace of mind.

What causes type 1 diabetes?
Type 1 is more common in children or adolescents. It is the result of an autoimmune process, which is basically like a case of mistaken identity. Your body's immune system, which is responsible for protecting your body from invading illness, attacks your own healthy tissue by mistake. With type 1, the autoimmune process attacks the pancreas, damaging it so it can't produce enough insulin.

Scientists aren't sure what triggers the autoimmune process but there are two factors that seem to play a role:

- Genetics. People with diabetes are more likely to have inherited certain genes that make them vulnerable to the disease.

Jack doesn't have any immediate relatives with type 1, although my teenage cousin was diagnosed a few years ago and Shad also has a cousin with type 1. My other children will be tested since it does seem to run in families.

- Environment.  Something sets off, or "triggers," the autoimmune process in a person with a genetic tendency toward diabetes. The trigger could be a virus, a chemical, stress, or something else the person encounters in daily life.

I have wondered since diagnosis if all of the stress of moving to grandma's house and then to our new house this past year could have been his "trigger." Not to say that if we didn't move this wouldn't have happened. If it wasn't moving, it would have been something else later on. Diabetes doesn't happen suddenly, although it did seem that way. It happens over a matter of months or years in where the beta cells (those that produce insulin in the pancreas) are under attack. This is how they can actually test to see if you are at an increased risk for diabetes before you even show visible signs. The damage to the beta cells is detectable through tests.

Is it possible to grow out of type 1 diabetes?
No, Jack will have this for the rest of his life. He will need to manage his blood sugar through food and insulin until they find a cure, until someone creates an artificial pancreas, or until the resurrection comes. This sounds a little daunting to me. I try not to think about it too much and take one day at a time.

Fortunately, or unfortunately, Jack won't know any different once he gets older. This will be a way of life for him and something he will have always known. For those that are diagnosed later in childhood or adolescence know what it was like to live without diabetes.

How do you treat type 1 diabetes?
Diabetes is treated with basically two things: Food and insulin. Food brings the blood glucose up and insulin brings it back down (so essentially food is like medicine for Jack). Our goal is to keep Jack's blood sugar within a target range at all times. Since Jack produces no insulin (or will eventually produce no insulin) his blood sugar has to be treated using artificial insulin. This can be given through a shot or a pump that is attached to the body (something we hope to get before he starts school.)

There are two types of insulin:

- Long acting (basal): taken once a day and lasts 24 hours. This insulin stays in his body for a longer period of time and essentially gives him a small dose of insulin throughout the day to keep him in check. This dose stays the same everyday, but changes slightly as he grows and needs more insulin.

- Meal insulin (bolus): taken every time he eats. Since food brings up the blood sugar, this has to be counteracted with a calculated amount of insulin based on what he eats. For those without diabetes our bodies do this naturally based on what we eat.

 This is the tricky part of diabetes because everything that he eats has to be counted for carbohydrates to see how much insulin he will need for that particular food. If it is not calculated correctly or food is taken without insulin it could cause a high or low blood sugar which can cause complications.

Right now since he is on his "honeymoon" and doesn't eat very much he hardly ever has to have a bolus shot and is on a very low dose for his basal shot. Almost enough that it makes me wonder if it is worth dosing him at all.

Obviously, it is impossible to keep him completely within target range all of the time. You are continually correcting the highs with additional insulin and the lows with additional snacks. The goal is really to just make sure that everything stays in check all of time (or MOST of the time). As long as you know what is going on then corrections can be made. This is why we check Jack before he puts anything into his mouth so that we know how to treat him. We also check him even when he doesn't put anything in his mouth just for peace of mind. This includes checks at 2:00 am, which he hardly ever wakes up for.

How is Jack taking all of this?
Honestly, for anyone who knows Jack knows what a happy and carefree kid he is. Although he doesn't like the shots entirely well, and he would prefer not to check his blood when all he wants is a few crackers, I think he has accepted this new way of life already. The needles are so small that you really can't even feel them and I think he is already starting to develop some calluses on his tiny fingers.

He still can to anything that any other normal 3 yr old can do. His diet has not changed at all. He can still have snacks, candy, and his beloved peanut butter and honey sandwiches. He is not limited to a "sugar free" diet. Just like any kid, it is important for him to have a balanced diet and that still includes sweets. However, now everything he eats has to be counted, calculated, and a possible shot given. I think it will make him value what he eats that much more once he gets older.

How is our family handling this?
It has been a lifestyle change, a stress, a learning experience, but also a huge testimony builder for us. We have already learned to rely on the Lord for help and never to ignore promptings when they come (which I am sure will become more frequent than ever.) Haken has learned the value of empathy (a topic for another post), and Gracie has learned that she is not always going to be the center of the universe with our attention turned to other things lately.

We are taking it in stride, but that is because we have been blessed by some of the most amazing doctors, support groups, ward members, friends, and family. We have a stable job with insurance (something I will never take for granted again), and have had confirmation after confirmation of why/when/where things need to happen.

When I see my sweet little boy's fingers already developing "prick marks" my heart hurts a little, but then I realize that he is alive and I will take seeing that little drop of blood every few hours to see his sweet little smile every second of the day. Being a diabetic is not what it used to be. We live in a day when it is better understood and controlled than it has ever been.

It is an adjustment (probably the biggest understatement of my life), but nothing we can't handle. People do this everyday and we are going to take this disease one day at a time because being a super hero isn't supposed to be easy.