Tuesday, November 30, 2010

A Late T1D Sibling Day Post

This post is to honor and acknowledge C. 

C is one of the most incredible humans I have ever had the privilege to love. He is probably the most simply complicated person I have ever met, and it is amazing to be his mother.  

He is 12, 15 months younger than his older brother and 7 years older than his sister. He is passionate about reading, and football and is a second degree brown belt in Shotokan Karate. He is the one kid in his class that ALWAYS has the right answer and is referred to as the "go to guy" by his teacher.  He remembers facts and trivia after reading it once, he has a thirst for knowledge and loves to learn anything that he is interested in. In a room full of people presented with a problem, C is the guy who provides the solution that leaves everyone thinking, "Why didn't I think of that?" His brain works different from anyone I know and he uses his gift beautifully.  C is the only twelve year old I know that can go to the de Young Museum in San Fransisco and stand before the painting of Orpheus's head on a lyre by Gustave Moreau  and then proceed to explain the mythological tale portrayed in the painting in front of twenty five people, including the Docent from the museum. 

He rounded out that day with a game of flag football and karate that evening. 

I have watched him play with the kid no one wants to play with and stand up for what he knows is right, even when it wasn't the popular thing to do. His sense of right and wrong is black and white and rigid. His stubbornness is admirable, and (ahem!) challenging (for the record, he comes by this trait honestly, he comes from a LONG line of pure stubborn. I think it manifested brilliantly in C). He is a hard, diligent worker when he commits himself. He is a perfectionist and his own worst critic. He is a terrible secret keeper, incredibly honest and has a wicked sense of comedic timing that can make laugh until you cry.

But where C really shines is in being a brother. I remember when he found out we were expecting and he was so thrilled. (T was worried about changing diapers!) He wanted to be a big brother so badly. Of course, he wanted a boy. I still laugh when L was born a girl. He said "Well, I will love her, but I'm not sure I will like her." I thought that was so profound and honest for a six year old. Watching him read her a bedtime story, play cars with her and teach her to throw a football makes me misty eyed every time.

      When T was diagnosed it was C who was there for L that first scary night, when Sam and I had to be with T and the kids were welcomed to our awesome, amazing neighbors to stay the night until my parents could arrive from WA state. And it was C who stepped in and helped Grandma and Grandpa keep the house running smoothly through the hospitalization. C took T's diagnosis seriously and understood from the start that our life had changed. He asked intelligent questions and was eager to learn. It has not been easy for him. There is no doubt that T1D takes up our time, our energy and our focus. It has taken attention away from him that he deserved to have. He doesn't complain when I come into the room that he shares with his brother several times a night trying not to disturb his sleep. Or when Dr. appointments and hospital stays interfere with our family. Or when wacky blood sugars or migraines change our plans. He has learned to check blood sugars, how to recognize and treat a low blood sugar and when to get help. C learned to draw up insulin when T was doing injections and now he helps get set change supplies together. L was with C when she had her first low blood sugar. (None of us knew at the time that's was what was happening)  He came into the house from playing outside and told me that there was something wrong with her and that he didn't know what to do. Now he keeps an eye on her too. 

     While he is grown up and mature in so many ways, C is wise enough to enjoy and appreciate being a kid. One of my favorite sounds on this Earth is his giggle. He works hard and PLAYS hard. One of the many reasons I love and admire him so much. I am so grateful he picked our family. We love you C, thanks for being YOU!!!

Monday, November 8, 2010

Clincal Trial Update

Deciding to allow Tanner to participate in the Start Thymoglobulin trial was by far one of the most difficult decisions our family has ever made. Our lives were upside down with a new diagnosis, our son was recovering from his close call with mortality, we were learning a whole new language (diabetenese) and trying to figure out how to ever be okay knowing that our son's life now relied on a little bottle of  insulin and our math skills. (I barely pulled a C- in math all through school, thank goodness the kids inherited Sams math skills) Including a clinical trial the magnitude of the thymo trial into the mix felt daunting at best. Through soul searching and scientific research a final decision was reached we all agreed on. To read about the process and details of the trial here.

T1 is caused by the immune system attacking the cells in the pancreas that produce insulin. Thymoglobulin is a drug used in organ donation transplants to stop donor rejection in the recipient. The START trial is being done to see if thymo can stop the immune system from attacking the pancreatic islet cells still functioning in a newly diagnosed Type 1 person.

To be honest, the trial was much more difficult than I had imagined. The infusions T went through left him feeling like he had the worst flu EVER.  I wrote several blogs in May documenting the trial. The side effect continued for weeks after including side effects we didn't expect. I had moments I seriously doubted our decision and judgment. Moments I wondered if it would ever be worth it. There were so many unknowns, all I knew at the time was how miserable our son felt, and how amazingly positive he remained. 

Part of the trial protocol involves very strict diabetes management, keeping logs, and multiple appointments that include extensive blood work and follow up testing. In order to have a full understanding of the results so far, you must have some background information in order to understand the significance of the tests.  T has appointments every three months for blood work and questions, and every six months for the next two to five years for a test called a Mixed Meal Tolerance Test (MMTT). An MMTT requires T to eat at least 150 carbs for three days prior to testing. Then fast with nothing but water for the last 16 hours. Except for his basal insulin, he can not have bolused or have any active insulin for at least two hours before the test begins. An IV is placed and blood is taken. T tests his blood sugar. He then drinks a supplement drink called Boost that has a determined amount of carbohydrates and protein. He does not bolus (administer through his pump) any insulin for the Boost. His blood sugar is tested and drawn every fifteen minutes for four hours. All data is collected and evaluated. This test helps measure how well his pancreas is producing insulin.

I will do my best to keep this as brief and as understandable as possible. Bear with me. First I will describe some terms, definitions and values and how they apply to a person without Type 1 Diabetes. Then I will relate the the same values for a person with Type 1 that would be typical for someone T's age and last I will reveal how T's values measure up.

People without Type 1Diabetes:

Blood Sugar Value: the amount of glucose (sugar) present in a persons body to provide energy for all organ systems. 
Value for someone without diabetes- 70-120 on average, children can be as high as about 140.

A1C: Is a numerical value average of the last three months of a persons blood sugar. A person without diabetes will have an A1C of between- 4-5.9

A Person with Type 1 Diabetes that is T's age (13) and in puberty.

There are thousands of factors that change blood sugar values in people with T1. Puberty is notorious for wreaking havoc with blood sugars in kids with T1. Boys produce testosterone, a steroid hormone, which makes the body very insulin resistant. It can cause blood sugar values to be stubbornly high, even with large amounts of insulin present. Our Dr. explained today that it is typical for a boy in T's stage of puberty to need 25 units of basal insulin for 24 hours (insulin needed to maintain basic body function) and have to take 1 unit of insulin for every 5 carbohydrates eaten. These numbers vary drastically from person to person.

 A T1 teen blood sugar values vary depending on the person but most goals are set at having a blood sugar of between 80-180. Because people are not perfect manual pancreas's, despite frequent testing, carb counting and testing at night,  it is almost impossible to always remain in those value ranges. T1 is a constant balancing act that requires continually factoring in multiple factors that are never static and can't be predicted. How to you predict hormones? a pending virus? the pancreas suddenly over-achieving and kicking out extra insulin? a set (catheter that administers insulin under the skin) becoming plugged? predict how fast or slow insulin injected into the skin will work? a growth spurt?  how much sugar the body burned running in PE? how many carbs are in the cupcake that Johnny's mom unexpectedly brought to school that you are carb counting by your childs description over the phone?You can't!! Resulting in numbers that are out of range and require more insulin or carbohydrates to correct.

An A1C goal for a T1 teen in puberty is 6.0-8.5. Multiple factors have to be taken into consideration between a doctor and the family to create a target A1C. It varies greatly and should not be the only criteria when determining how well a teens T1 is being managed. Even teens that diligently test and work hard at managing T1 can still struggle with A1C's. Sometimes an A1C can be well below this, which at first glance may seem great, but can be a result of devastating low blood sugars which can be dangerous-even fatal. Having a lot of low blood sugars can lower an A1C and insulin adjustments have to be made to prevent lows.

T's results so far:
T did his MMTT today. He did not bolus or inject any insulin for this test. He does continue to use his basal insulin which maintains his body's basic insulin needs for metabolic function. His blood sugar before starting the test was 94. At half an hour after drinking the Boost he was 125. At an hour and a half he was 150. At two hours he was 186.  At three hours he was 143. At four hours he was 100. A half hour after the test ended he was 78. T's blood sugars are rarely below 65 and seldom above 150.  His average blood sugar value is 103. He uses about 8.5 units of insulin over 24 hours for his basic metabolic needs (basal insulin) and he takes 1 unit of insulin for every 18 carbs.

His A1C was 5.1 today. His lowest blood sugar over the last three months was a 64. Even for someone in his "honeymoon" phase of Type 1 diabetes his A1C is rare. His Dr. walked in today toward the end of the MMTT and said jokingly, "Do you have Type1? Why are you here? With this A1C and these blood sugars you don't qualify for this trial!" 

We have no way of knowing how long this will last. T has never once regretted the trial and what he went through. Many of the "what if's" and worries, while warranted at the time, have faded now. T's T1 still requires work, diligence, testing, carb counting and worrying.  And we realize how different his T1 is from families and people struggling with this disease. We also know that it can change anytime and and there is no way to predict that. We are just so happy to have been presented with an opportunity and for having a son brave enough to seize it.