Monday, June 28, 2010

Diabetes Crash Course 102

My worst subjects in school were foreign language and mathematics. T1 has given me the opportunity to revisit both those subjects and forced me to become proficient. Your kids health is a powerful motivator. In the beginning I felt like everyone was fluent in "Diabetenese" and I was baffled how fast people could calculate the amount of carbs in a dish with the serving size and then determine how much insulin to take to keep their blood sugar in the proper range. I don't have that many fingers.

I won't make you do math, but I hope to give you an idea of what it takes to co-pancreate 24/7, 365 to keep T healthy. You may not be fluent in "Diabetenese" at the end of class, but you will feel more comfortable with it.

Diabetenese 101

Common terms and definitions

Blood Glucose (Sugar)- the main sugar that the body gets from food to use as energy. Glucose is carried through the blood stream and delivered to all cells in the body. Every cell in the human body requires glucose to function.

Carbohydrates- Okay, most everyone knows what carbs are, but I felt like we had to cover this. Carbohydrates are a source of energy from food that is converted in the body into glucose.
Some foods contain carbs and others do not. Foods that contain carbs are breads, grains, rice, pasta, baked goods, desserts, fruit, some vegetables, (especially potato's), milk, flavored yogurt, etc., ect. Foods that do not contain carbs are meats, cheese, eggs and heavy cream. If you have T1, all carbohydrates consumed must be properly calculated to keep blood sugars in a range that keeps you feeling good.

We use our smart phones, books, labels and calculating recipes to determine how many carbs are in everything T puts in his mouth. We weigh, measure and SWAG (scientific wild ass guess) portions to determine serving size. Right now T takes 1 unit of insulin for every 20 carbohydrates he eats.

Pop quiz!!

Just kidding. We will quickly carb count a meal. A hamburger and fries. Buns have about 30 carbs, the meat is carb free and fries have 45 carbs per cup (or 100 grams) of fries. Here is where you get to SWAG or weigh. The typical serving T eats is about 60 carbs of fries. Don't worry, I will do the math for you- and I don't even need my fingers anymore.

60(fries) + 30(bun)=90

1 unit insulin/20 grams of carbs

90/20= 4.5 units of insulin

Insulin- The hormone produced by the pancreas, or if you have T1, is administered by shots or by insulin pump that allows your cells to use the sugar they need to function. It works like this- Your pancreas starts releasing insulin when you smell your food, before you even eat it. You eat carbs. Your body processes the food and releases sugar into your blood stream. The insulin acts as "the bridge" that goes from your blood stream into the cells, delivering the sugar the cells need to function and live.

High (Hyperglycemia)- "Are you high?" Try asking that to your thirteen year old in a public place and see how many heads turn. We joke about it all the time. Of course, we are talking blood sugars here! If there isn't enough insulin in the body, the bridge between the blood stream and the cells isn't there. The sugar accumulates in the blood stream and remains unavailable to cells, leaving them to starve and breakdown. A "high" leaves T feeling tired, lethargic, he gets a headache and his muscles hurt. Left untreated without insulin and fluids it can result in a serious life threatening condition called diabetic ketoacidosis (DKA).

Low (Hypo, hypoglycemia)- If there is too much insulin in the body it uses up all the sugar available resulting in a low blood sugar. Lows are treated with fast acting carbs that are high in easily absorbed sugar like glucose tablets, juice, honey, candy (not chocolate-I know, not fair but it has too much fat and slows the absorption), regular soda, graham crackers, etc. Low blood sugars left untreated are life threatening and can be fatal. They can happen from too much insulin, too much exercise or activity, excitement, hot weather and sometimes for no obvious reason at all. They leave T feeling, shaky, sweaty, dizzy, anxious and it also affects his ability to make decisions and treat himself. He usually gets a migraine after a low.

Correction- People without T1 have a blood sugar value on average of 70-120. People with T1 become manual pancreas's and keeping blood sugars in range is a constant balancing act. If blood sugar is too low (less than 65 or 70) then you would "correct" by eating a fast acting carb like glucose tablets or drinking juice.

If blood sugar is too high then more insulin must be administered. Calculating the amount of insulin needed to lower the blood sugar to a safer range requires MORE MATH. Right now for every 50 points of blood sugar that needs to be lowered T needs 1 unit of insulin. His target range is 70-120. We "correct" his blood sugar to 100 during the day and 150 at night. If his blood sugar is 175 here is how we would calculate how much insulin he needs.

175-100(his blood sugar target)=75

75/50=1.5 units of insulin

If he was about to eat, we would add up the carbs of his meal and calculate how much insulin he needed to cover his food, then we would add the "correction" amount of insulin.

4.5 units (meal) + 1.5 (correction)= 6 units of insulin administered by shot or insulin pump.

If his blood sugar was 75 before he ate we would subtract 1.5 units from his food insulin to help bring his blood sugar up to 100.

So how do you know what your blood sugar is? How do you know how to carb count? How do you get insulin?


The Poker-Spring loaded torture device that pokes T's finger and makes it bleed. He uses it every time he checks his blood sugar. Before meals, before exercise, when he wakes up, before he goes to bed and anytime he feels high or low.

Test Strip-Little strips of something scientific that have legs and travel when you aren't looking. You insert one into a glucose meter and apply the blood from the poked finger. I find these little buggers everywhere! (dryer, couch, floor, bed, the dishwasher?!, and yesterday stuck to my leg while outside working, wth?)

Glucose meter- This mini machine does something else scientific and magically determines the amount of sugar in the blood applied to aforementioned traveling test strips. As sophisticated as it seems there is a 20% margin of error in glucose meters. Frustrating and unacceptable, but at this point unavoidable. A story for another blog.

Insulin Pen- A device for administering insulin by injection that has a cartridge of insulin that is in a plastic device shaped like a large pen. It is easier to measure the insulin in an insulin pen than by drawing insulin into a syringe from a vial and then injecting it. These made our lives much easier. You attach the disposable, detachable needle, dial the end of the pen to the corresponding number of insulin units needed, insert it under the skin of the abdomen, buttocks, thigh or upper arm and push the plunger down.

Insulin Pump- A mechanical, manual pancreas. A pump is a computer that contains a resevoir of insulin. It comes with its own blood glucose meter that communicates with the pump. Insulin is administered to the body through a tube attached to a small cannula (a small catheter we call "a set") that is inserted and worn under the skin of the abdomen, buttocks, thigh or upper arm. It must be worn day and night and not be removed for more than an hour or so at a time. The set must be changed and new insulin put into the resevoir every three days. The tubing and pump can be removed from the set for showers and bathing. Some pumps are water proof and can be worn while swimming. T's is not.

Insulin is administered in a slow steady stream to help cover the amount of sugar the body needs to cover all basic needs. This is called a basal rate. It is the amount of insulin needed to make your heart beat, your food digest, your brain to function, your body grow (kids) and cells to regenerate.

Insulin is also bolused in larger amounts to cover carbohydrates. Blood sugar is measured by the meter that corresponds with the pump, the number is wireless transmitted to the pump. T then enters the amount of carbs he is going to eat. The pump calculates how much insulin is necessary based on the ratios manually entered and then saved by the pump. Any correction is calculated by the pump based on values manually entered that the pump saves. A total amount of insulin is shown and then T tells the pump to administer the insulin.

Continuous Glucose Monitor (CGM)- T's CGM is a wireless device that has a catheter (sensor) worn under the skin that measures the glucose in the tissue below the skin on the abdomen, buttocks, thigh or upper arm. It measures it frequently and then averages the readings and transmits it to T's pump. It requires frequent calibration with his blood sugar values. It is not as accurate as using glucose testing in blood sugar and it doesn't mean he tests his blood sugar less. It does help us see when his blood sugar is raising or lowering or if it is holding steady. It also helps predict when his blood sugar is changing rapidly. It has multiple alarm settings that can be set to help predict when the blood sugar values may be getting too low or too high. It is waterproof and the sensor can be worn for 6-10 days.

Whew! We covered a lot today. Thank you for taking the time to learn about what it takes to become a pancreas. There is a lot more to cover, but for now- enjoy summer. We certainly are!

Class dismissed.

Wednesday, June 16, 2010

Diabetes 101 Crash Course

I will never forget arriving at the ER with T and being taken directly back to the exam room in front of several other people waiting. I remember thinking- this isn't good. The nurse grabbed a small device thingy and told T she was going to poke his finger. I watched her place a little strip thingy in this little device with a screen on it. She poked T and then held the little strip thingy up to the bead of blood on his finger. The little device counted down 5-4-3-2-1. The nurse showed me the number with a scary concerned look on her face. 688. Then she ran out of the room.

I looked at T and said- "T, have you ever heard of a condition called Type 1 diabetes?" His eyes welled with tears and I grabbed his hand. "No, well yeah, sort of, is that what I have?"

"Yes, it is. It's going to be okay T. We are going to have a lot to learn, but you will be okay. We are going to figure this out as a family. This is one of those conditions that can be managed." I said. I couldn't bring myself to use the word disease.

"Is there a cure Mom? Can we make it go away?" I took a deep breath, so I could look him in the eye and not break down. "No, there isn't- yet. We are going to learn as much as we can T. You will be able to do whatever you want with your life. This isn't going to stop you from anything."

The Type 1 Diabetes Crash Course began. Honestly, I am glad I didn't know everything I know now, back then. I would have been so much more terrified and heart broke if I had understood how sick he was at the moment. I didn't know enough to be as scared as I should have been. That all came later in the night, after we learned just how seriously sick T was. His health rapidly declined, plateaued and then returned. Over the next several days, weeks, and months we have realized what a herculean task being a pancreas is.

Everyone says, "What can I do to help?"

My answer: Read this blog. Seriously. Learn the basics of Type 1. Don't make us keep repeating it. Take a few minutes and learn a little bit and then pass it on. We don't expect anyone to know anything about this disease. That all being said, sometimes it is exhausting saying the same thing over and over. We also realize that not everyone wants every detail about this, yet it is so consuming sometimes it is hard not to talk about it. We realize that we are now Type 1 diabetes advocates. It is a choice, we could have kept this quiet- but that just isn't how our family rolls.

So here starts your Diabetes Crash Course 101. By the end of today's lesson you will know recognize the difference between the 3 main types of diabetes and will have a small taste of what it takes to manage Type 1 diabetes.

Lesson 1

Type 1
- Type 1 diabetes occurs in children and less commonly (although with increasing frequency) in adults. It is an autoimmune disease. It occurs when a portion of the immune system malfunctions and begins to attack the islet cells in the pancreas that produce insulin. In order to develop diabetes, you must have a genetic make-up that makes you more likely to develop it. Many people who develop diabetes have something that happens in their life that "triggers" it. A stressful event, illness (even a common virus) or growth changes, puberty, injury or surgery. There is no cure and the only treatment is insulin by injection or through an insulin pump.

Having type 1 diabetes does not limit the foods that can be eaten. Individuals with T1 do not have to have a sugar free diet. The amount of carbohydrates going to be consumed must be calculated for every food item going to be eaten and then the appropriate amount of insulin injected under the skin based on mathematical ratios that meet your bodies needs.

People who have type 1 diabetes are at greater risk of losing their vision, heart disease, kidney failure, limb loss due to poor circulation, shortened life span, severe low blood sugars, and diabetic ketonacidosis. Having the best management possible reduces these events. Research and tools have come a long way in recent years and I believe that our children will not see these complications. I tell myself that so I can sleep at night.

Type 2
- Type 2 is a metabolic disorder. The body still makes insulin, in fact it may even make too much insulin, but the body stops using it efficiently. It can be managed with oral medication, reducing sugar and carbohydrate intake in the diet and exercise. Sometimes Type 2 diabetes can be reversed with diet and exercise alone. People with type 2 diabetes have the same risk factors and increase of risks as people with type 1.

Gestational Diabetes
occurs during pregnancy. Some women can manage it with diet and others become insulin dependent. The risks for gestational diabetes are birth defects for the baby if not treated, miscarriage, a baby that grows very large and a baby that can have a serious low blood sugar after being born. Most cases of gestational diabetes go away after pregnancy ends.

Lesson 2
People who do not have diabetes have a normal blood sugar range of 70-120. The target blood sugar ranges for people with Typ1 will vary based on age, weight and other factors. For T's age group 80-180 is common, however the clinical trial protocol T is involved in has a tighter blood sugar range of 70-140. There are so many factors that influence a persons blood sugar that it is very challenging, if not down right impossible to be as effective as a pancreas. Factors like how much and what kind of of food you eat, sleep (or lack of), activity, exercise, emotions, stress, weather, temperature, hormones, the list goes on and all play a role in how much insulin your body needs and how it uses it up. ALL of these factors must be taken into consideration (and sometimes predicted) before every single administration of insulin as well as every activity and meal. Essentially, when a Type 1 diabetes diagnosis is made, the person diagnosed or the caregivers of said person take on the roll of an imperfect pancreas. Being a pancreas is hard freakin work.

T checks his blood sugar with a finger poke and a glucose meter when he wakes up in the morning, before every meal, before exercise, after exercise, at bed time, and any time he feels like his blood sugar may be too low or too high, and then I check him 2 times every night around 12ish and 3ish and then Sam checks him in the early morning hours. It averages out to 8-12 times everyday, 24 hours a day, 7 days a week.

The number that the blood glucose meter comes up with determines if T needs more insulin by injection (soon to be administered by a pump) to lower his blood sugar, or more food to raise his blood sugar. If his blood sugar is in his target range and he is about to eat then we calculate the amount of carbohydrates in the food he is going to eat, calculate the amount of insulin he needs and then he injects it and eats. We calculate carbs by using labels, weighing foods, by using our Droid smart phones and by my favorite method the "SWAG method" (scientific wild ass guess).

It totally rocks when we get it right and he stays in target- the times we don't he either has a low blood sugar from having too much insulin that makes him feel shaky, weak, sweaty and sometimes results in a migraine or a high blood sugar from too much food and not enough insulin that leaves him tired, shaky and gives him a headache. It is frustrating that instead of a letter grade for our crash course, our success or failure with Diabetes 101 is our son's health and well being.

Thanks for being a great class. Stayed tuned for Diabetes 102 when we will cover the tools that help us manage this beast and the insulin pump that T will be using to administer his insulin.

Class dismissed.

Friday, June 11, 2010

T's Awesomeness

These pictures are snapshots of our life during the clinical trial. You will notice that he smiles in every one of them. Despite the fact that in some he had high fevers and terrible body aches, nausea, chills, rigors, etc. His attitude is inspiring and humbling.

The PIC line is in and infusion is ready to start.

The very first infusion

Vitals and blood sugar checks by Super G

T's biggest supporters

Still smiling...

One of the tougher times.

Time to go HOME!

We have had an interesting experience as we have journeyed through this clinical trial. Two steps forward and one step back. Twists and turns, ups and downs, hope and tears.

I have watched our family mature and grow in a way I couldn't have imagined before. I am so grateful our marriage has had a rock solid foundation, I have needed a soft place to fall. Our other son has taken a new role in our family, he has matured and grown deeper into his potential in a remarkable way. His relationship with his brother took on a new meaning, he has become more protective and responsible for his older brother and his younger sister. He has a new awareness in his eyes and soul that has changed the way he carries himself and expanded his confidence. Little Miss L has adapted with the ease only a spirit like her's possesses. She has taken her world changes with a grace and maturity that belies her age.

And then there is T.

We left the hospital on May 15th. The first few days home were spent resting up and re- cooperating from the medicines and the sleep deprivation. T didn't feel bad that first week, but he certainly didn't feel great. He didn't make it to school that week. Serum sickness hit five days after we got home. A rash, most of the blood vessels in his eyes ruptured, a mild fever, nausea, and some body aches. We started the steroids and ibuprofen and T felt better by the next day. He improved so much over that weekend that we decided to wean him off the steroids. Monday he went to school and had a great day. We were feeling pretty "bad" thinking we kicked serum sickness butt. Serum sickness proved us wrong and returned with a vengeance not seen before about 36 hours after the last steroid dose. Horrible body aches, rash, rigors and relentless nerve pain. Steroids, pain medicine, hot packs, cold packs, blankets, hand holding, and love helped him cope until relief came. We gained a new respect after being schooled by serum sickness and weaned off the steroids much slower this time. T made it to school a total of three days before summer break. One day was spent participating in a school wide water fight and play day. I am glad he didn't miss it.

I am at a loss of words to portray how proud of T we are. We have admired his thought process as he researched and made his decision, admired the courage and strength it took to endure the trial process. The grace that he showed when feeling the worst he has felt in his entire life. The hope and positive attitude he has maintained on the difficult extended recovery he endured after the trial. He has never regretted his decision, and has expressed nothing but gratitude for receiving the study drug.

Time will tell both the researchers and our brave boy if what he endured had the desired result. Over the next months and years if T's blood sugars remain stable and easy to manage it will be a blessing indeed. If not, the education we are receiving about diabetes management and the contributions to research are invaluable.

We are so new to diabetes that we must hold onto hope. Hope that someday there is an end to pokes, carb counting, shots, doctor appointments and insurance battles. Hope that there is an end to the stress, burden, worry and fear living with this brings. Hope that there are researchers more passionate about a cure than drug companies are about a profit. Hope that there is a cure. Hope that T contributed to it.