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.

 

Tuesday, October 26, 2010

JDRF Walk Day 2010 Golden Gate Bridge

I had so many plans for our first JDRF Walk. I was going to write a letter worthy of the Oprah show. Make a video worthy of an Oscar. Raise thousands of dollars.

And every single time I sat down to work on my Oprah letter and Oscar nomination worthy video, I found myself emotionally crippled. Overwhelmed by grief and sadness. I couldn't look at the pictures and the words that came out seemed sad and desperate. Not inspirational and heartfelt. I agonized and felt guilty. Here I claimed I would do anything to find a cure for our son, yet I couldn't write a letter or make a video and could barely bring myself to sign up? I could talk the talk but not walk the walk. Not like me at all.

I needed a new perspective. I forget that it has been eight months since our lives changed forever. Then with our recent scare with L it brought up so many emotions from T's diagnosis and the fear and anxiety I feel for her overwhelmed me. Instead of denying the feelings, I let them come. I decided that this year the walk was for US. It was to acknowledge all we have been through and celebrate the triumphs. To acknowledge the challenges and tribulations and how we keep conquering them. We walked to show how grateful we are that we are together and healthy. We walked to honor T and what an amazing job he is doing and for his brother and sister and all their support.

Here is a video of our JDRF Walk Day 2010.


video

We had an amazing time, walking with amazing friends (Go team Schuwalker!), meeting new people and feeling like part of a world community. T's clinical trial team was there and we had a happy reunion. They were amazed at how well T is doing.

We continued our celebration by visiting the de Young Museum in San Francisco and seeing beautiful tribal artwork from Africa.  We didn't bring a change of clothes, so we wore our walk shirts to the museum.

The highlight of our trip was when a beautiful woman walked up and said, "So did you guys walk today or are you all wearing matching shirts to find each other in the museum?" We explained that we had walked today and she went on to tell us that she had been Type 1 for 25 years. Diagnosed when she was 14. She had traveled all over the world, to Europe, and Asia, and had just returned from Africa, had two healthy kids and told us she had never been in the hospital for Type 1. She gave T advice about college, driving and how to "manage" his parents. I found it interesting that she said that Type 1 is way harder for parents, than it is for the kids who have it.  She wanted T to know that Type 1 would never stop him from doing anything he wanted to do. I hugged her and thanked her. She had no idea how badly I needed to hear that. And T was lit up the rest of the day. To the beautiful, world traveling, wedding attending, fellow T1D woman from Texas- THANK YOU.

Then we played and splashed in the park in the rain. We finished off our day with our favorite Burmese restaurant- where we SWAGed with awesome accuracy (or just plain dumb luck-but hell, I'll take it)!

I am so glad we went. We had a wonderful day. This was a practice video for next years donation drive video. I am preparing my speech all ready.

Thursday, October 21, 2010

Results Without Answers

I have sat down to write this post several times, yet I keep finding myself unable to put my thoughts together. My thoughts and feelings are scattered like dandelion seeds on the wind.

Last month our daughter had a frightening episode of hypoglycemia (low blood sugar). You can read about it here.  In the back of every Type 1 parent's mind lurks the fear that your non-diabetic children will develop Type 1. When your child is first diagnosed there is a certain amount naivety, you just don't know all the intricacies of having Type1. You don't know how much work it is. You don't know how scary it can be. You don't realize the impact it will have. I felt like the realizations came along the same time as my resolve and strength when T was diagnosed. Facing a possible second diagnoses, that naivety is gone. You know how bad it can really suck. You know the fear, the anxiety. You know the impact it has on your child, you can see into the future and imagine what the lows will look like, how the highs will feel, because you have seen it before.

We had L admitted to UCSF for further testing. She fasted for 22 hours in an attempt to create a low blood sugar. She was amazing and never complained, never cried. The staff fell in love with her. They were so impressed with how she handled everything. She watched as they put the IV in and made jokes about her blood. She rocks. Parenting her is such a gift.

She never did have a low blood sugar, we were relieved that her body seem to do exactly what it was supposed to, but worried to have not found definitive answers. Before discharge we weighed the options. There are some blood tests that can help determine your risk of developing Type 1 diabetes. They measure the amount of autobodies in your blood. There are four different autobodies that can be tested. The tests are not perfect and there are only a few labs in the US that perform the tests. L and our other son C are both enrolled in a clinical trial called TrialNet that tests their blood every year until they are 18 to test for these autobodies. Both kids were tested in March of 2010 and the results were negative for autobodies. Indicating that their risk for developing type 1 was very low. That can change at anytime.  Researchers are using the study to try to determine how and why people develop autobodies and if they do, if it is possible to delay the onset of Type 1.

We decided to run these autobodies tests again on L. The blood was sent to a lab that is different than the TrialNet lab. We had no idea it would take weeks to get results. L has not had any low blood sugars since her hospitalization. We only test her blood sugars if she seems symptomatic for highs or lows or if she asks. We have seen some numbers in the 190's that have created concern. (normal is 70-140) Last Friday L and C 's school had their annual huge fundraiser, a Walk-a-thon that they entire school participates in. C and L both walked 10 miles to support the school. It was half way through when I got an email from L's Dr. with the results. Two out of the four of her autobodies were elevated.

The normal GAD value range is 1.0 or less. L's was 1.8.
The normal ICN value range is .8 or less. L's was .9

Dr. G went on to explain that although her values were elevated, he was not comfortable calling them positive. He explained that this lab is not as sensitive or advanced in technology as the TrialNet lab and that the results are not as precise. He felt that her values were not "off" enough to say that she she is definitely positive. He also said he was concerned to see that they were elevated in combination with the higher blood sugar values. His advice was to continue careful monitoring, testing her blood sugar when she seemed symptomatic, and randomly 2 hours post meal and fasting every week or so and keep track of the numbers for trends. If we start seeing numbers in the 190+ range longer than two hours after meals or higher fasting numbers then we will reevaluate. We will retest through TrialNet in March or sooner if necessary.

I feel like I was prepared for a positive or a negative result. I am grateful it wasn't positive, but I really had hoped for a negative result. This in-between isn't what I expected. My emotions run the gamete ranging from grateful and hopeful, to angry and heartbroke. I can't get the look on T's face out of my head when we told him the results.

Here we are with results without answers. Next time I find a dandelion and blow on the seeds, I think you all know what I will be wishing for.

Wednesday, September 8, 2010

"Mommy, my legs feel scared...."

Today might have been one of those days that changes our lives forever. One of those days we never forget and sends our life on a whole new path. Or it might have been a random fluke, a weird, scary, rotten reminder of the deep fear we all carry about Type 1 diabetes and siblings.


This morning T's little sister L was tough to wake up. Incredibly unusual for a girl who is in love with Kindergarten and her new teacher. She has been battling a mild virus, a stuffy nose, no cough, no fever kind of virus. She was pretty much over it, I never kept her home from school, it was hardly noticeable and didn't bother her. It was oddly similar to the type of virus T had three weeks or so before he was diagnosed. I thought maybe she was hard to wake because her virus had returned and worsened. She would wake up and then dose off, she was soaked in sweat and completely not herself.


It wasn't until she looked at me and said; "Mommy, my legs feel scared," that my stomach sunk, my heart broke and I felt the panic rising. She held up her arms to me and she was shaking terribly. I looked at T and he was all ready heading to the kitchen to get the meter, poker and test strips. Poke. 5,4,3,2,1... 41. Juice. 15 min. 61. Juice. 15 min 81. Oatmeal and cheese. (I know not the best choice for BG, I wasn't thinking very coherently). In the meant time she was drowsy, we could wake her and ask questions and she would respond and then fall immediately back to sleep. She was 145 an hour after breakfast.


I called T's Endo and asked for advice. After some deliberation about where to go and with L continuing to be very sleepy, we chose the ER with the Endo's pager number in hand. We arrived at the ER and they took us straight back and paged the Endo to get orders for blood work. Her blood sugar was 208 at 11 am in the hospital with small ketones by urine. We put in an IV and waited for the blood lab work to return. She was back to herself at this point. By 1:00 she was hungry. We tested her BG and she was 54. She ate a good lunch and then we waited some more. Her blood sugars were between 90-100 the rest of the afternoon.


The test results are inconclusive. So far everything we know is positive. Her A1C was 5.4. A good indication that her sugars haven't been too high for any period of time, it also indicates that if she has been having hypoglycemic episodes (low blood sugars), they have not been occurring for very long. A "normal" A1C is between 5.0-6.0. Her blood was negative for ketones, indicating that she has insulin available in her body. The ketones in her urine were probably from fasting overnight. We made a collaborative decision with the Endo, the ER Dr,. and us to go home. We will be monitoring her blood sugars and activities. Over the last few weeks L has said that her legs felt scared a few times, I didn't make the connection. There have been other things as well, but it is difficult to say if it is symptoms or coincidence, or fear and paranoia. If she has any more episodes of hypoglycemia she will be admitted to the hospital for observation and to create a low blood sugar, in order to do lab work while it is happening, hoping to result in some answers.


Our other two children were tested in April for anti-autoantibodies for Type 1 diabetes and both were negative, indicating that their chance for developing T1 was unlikely. That can change at anytime. Our immune systems can create anti-autobodies at anytime, increasing the risk of developing T1. Sometimes a virus triggers this change. Our local hospital was unable to do these tests. We are getting the paperwork together and will be having her retested for anti-autobodies this week. A negative result should mean that her chances of T1 are slim, a positive could indicate that she is in the early phase of developing T1.


I am too exhausted to post about how I feel. The fear, the anger, the HOPE. I know we can handle anything-I just hope we don't have to.

Sunday, August 22, 2010

Life B.D./A.D.

Six months ago today, on February 22 our lives changed forever.

Unlike many of the amazing families of T1 kids that were diagnosed as baby and toddlers, T was diagnosed about three weeks before his 13th Birthday. Many of them don't know what it is like to parent a child without T1. They all have my deep love and respect, I am so grateful that I can still remember what life was like Before Diabetes. (B.D.)

B.D. poker was a game that I taught my kids and never won again, not a little torture device that is used to stab his finger to keep him healthy.

B.D. the only time I ever thought about "BG" (stands for blood glucose) was for the two seconds it took me to change the radio station every time a BeeGee song came on. (Sorry fans it is something about that nasally high pitch voice that drives me bonkers!)

B.D. we took for granted the CraZy freedom of going out for dinner and eating mexican food and ice cream in one night, or going out for pizza and to a movie with popcorn and candy without calculating, weighing and SWAGging the carb counts and insulin dosage and then worrying and checking all night about how it will effect his blood sugar.

B.D. T would run in the house dirty, laughing, exhausted from riding bikes and playing outside with his brother and sister and grab a couple of cookies and a huge glass of milk and swig it down. Without even thinking twice about it. Without worrying about a low blood sugar from the activity and without calculating carbs.

B.D. a pump was a part that went out in our Ford diesel truck that cost us about $1200, I shouldn't have complained, it was cheap compared to T's.

B.D. a "Square" was a shape like a box, and a "dual wave" would have been two waves in a row on the lake or ocean. Not scientific methods of delivering insulin with a pump over an extended period of time to help deal with high fat foods.

B.D. "diabetus" was a word I associated with the grumpy, kinda cool old guy on the Liberty Medical Supply commercial and not the disease that almost claimed our boys life.

B.D. I remember what it was like to let him play or work outside all day long and only worry about a sunburn. And to hug him goodnight every night and only worry about nightmares and migraines, not serious low blood sugars and worse.

T does too. He remembers. He knows "what he is missing." He knows what life was like B.D. There has been grief, sadness, anger, fear. Some days, there still is. Dealing with my own feelings is hard, watching our son deal with his has been harder. There has also been, strength, grace, courage, emotional and spiritual growth, maturity, compassion and LOVE.

Life After Diabetes (A.D.) is a work in progress.

There has been an immediate sense of "prioritization". Life issues are much easier to categorize according to importance.

A.D. There is less sleep and more productive worrying. I use to worry about things I couldn't change or didn't know. I still worry, but my worry helps me stay vigilant and focused.

A.D. We are more aware of what we eat and our health. More appreciative of how incredible our bodies are and how they work.

A.D. We are more aware of time and how fast it is going by. How fast life can change. How to be more grateful and appreciative. More compassionate, less judgmental. More aware and less hurried.

A.D. We have an met an entire amazing network and support system of T1 families and people affected by T1. People I can't imagine my life without now.

A.D. We are closer. Stronger. Life after Diabetes is becoming life with diabetes. And we are LIVING it.




Thursday, July 22, 2010

The Voice

I will start this by saying that I am really grateful I don't have to boil T's urine to check his blood sugar. Seriously, I have met many people with type 1 that spent years boiling urine to determine what their blood sugar was before they had blood glucose meters for home use. Sugar crystals don't even appear unless your blood sugar is over 200. I am grateful to have better tools. And, as grateful as I am, the tools we have aren't good enough.

Four nights ago T went to bed with a blood sugar of 99 and two hours later when I checked he was 177. The Voice in my head said "Recheck". With his honeymoon in full swing it is unusual for him to be that high. I rechecked him and the meter said 134. I breathed a sigh a relief, and thanked The Voice. Had I given him insulin, he surely would have gone low.

The next night, he was 106 when he went to bed and two hours later I checked him and was 167. I washed his finger and rechecked and got 172. Gave him his correction and rechecked him in an hour and got 160. Hmmm. I knew his hands were clean, The Voice said "Retest."

126

The Voice can't be repeated here, my Mom reads this blog.

Deciding to give his meter the benefit of doubt, I changed the battery in his meter, thinking that it might be bad. Even though it is only a month old.

Last night T went to bed with a blood sugar of 104. Cool. Normal for him. He had a low in the afternoon and I planned on checking him earlier than I normally would have that night. At midnight I checked him and got 208. Yes, his hands were clean. The Voice screamed "B.S. Retest."

82

8 freakin' 2

I fed him. Had I not listened to The Voice, I would have given him 1.6 units of insulin and rechecked him in an hour. If 1 unit of insulin brings his blood sugar down 50 points and he was only 82... you do the math. Every time I think of it I get a horrid feeling in the pit of my stomach.

I tried to sleep, but all I could think was "what if". What if, I ignored The Voice. What if, it had been the 3 a.m. blood sugar check when my brain is complete mush and I can't figure out why the stupid meter isn't working after I have all ready stabbed him twice to get him to bleed, only to realize that the damn test strip is in BACKWARDS. Turn the test strip around, but of course he has moved his finger and wiped the blood off. What if, it had been then and I had just reacted. What if, it happens in a year and I am complacent and more comfortable and I have forgotten to be vigilant? What if, my brain is so full of numbers and worry I can't hear The Voice?

The insulin, meter, test strips, pump, etc are all tools that help us keep T healthy. But I am not sure how I would do this without The Voice. My instinct, intuition, gut feeling. Even with all the "what if's", I trust it more than his damn meter.

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?

Tools




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.







Saturday, May 15, 2010

Infusion Days 3 & 4

Days 3 and 4 past much like the first two, with the exception that we were much better able to stay ahead of the symptoms. We gave him more medicine as prevention instead of as treatment after symptoms began. He still felt pretty crappy but it was manageable. The high blood sugars continually add to the over all crappola feeling.

T's blood sugars had steadily climbed up and yesterday the hospital meter greeted us with a rather sarcastic "HI". Not a "Hi, glad to see you," kinda "HI", more like a "HI" your blood sugar is over 500 "HI". Not cool. Especially considering he was due for another dose of steroids in 5 or 6 hours as per clinical trial protocol. Steroids have a well known side effect of causing high blood sugars, even in people without type 1 diabetes.

When T entered the hospital his insulin needs were very low, thanks to his ongoing honeymoon. He took 8 units of lantus in the evening, took 1 unit of insulin for ever 45 grams of carbs for breakfast and lunch and 1 unit insulin for every 65 carbs at dinner. Sometimes he could eat without any insulin at all. He would take 1 unit for food typically and no insulin to correct his sugar. Last night he took 25 units of lantus and is now on a 1 unit of insulin for 5 carbs at meals. I will spare you all his correction calculation because my brain is mushy from sleep deprivation. Suffice it to say that it is impressive. That meant he took 29 units of insulin for correction and a no carb dinner last night. Hard to believe. I know that as he grows and his body continues to change his insulin needs will increase and that those numbers may become a norm for him. But for it to happen within 24 hours, and for him to still be battling 500 blood sugars, makes it hard to wrap my little brain around.

Dr G said he had never used that ratio for someone T's age. At least we will be memorable. Dr G was uncomfortable enough (and I was freaking out enough) that he decided to scrap the last dose of placebo/steroids. I was relieved. His blood sugars have come crashing (safely) down and we hope to be back to "normal" within 48 hours or so.

Our journey with thymo isn't completely over though. It has a sneaky way of hanging around and reminding you of your hope/hate relationship. Everyone who has received the study drug has a return of moderate to severe flu symptoms called serum sickness 7-10 days after infusions. A not-so-friendly little reminder to the t-cells to turn the hell off and leave his pancreas alone!

I would love to write about T's awesomeness but I am too emotionally fragile right now. Too sleep deprived. Too jumbled up. Full of hope and admiration. And love.

To all of you family, friends, D-parents, and people rockin' life while coping with D who have followed T and sent your love, energy, prayers and spirit- from the bottom of my squishy, mushy, full of love heart- THANK YOU.

Tonight-HOME.

Thursday, May 13, 2010

Infusion Day 2

Unabridged Version.

2am-8am Sugars are in the 300-400 range. Continually chasing highs with ever increasing insulin.

8am Blood draw for study.

10:30 Premeds of tylenol, benadryll, long talk with Dr. G about insulin overhaul and stacking insulin crash course for T and I. Super good info.

11:25 Diabetes educator Jeanne arrives bearing gifts- a free ketone meter WITH strips. Score! Have I mentioned that we love her?! T and I also try pump sets for delivering insulin from an insulin pump. T tries the stainless steel Sure T and I try the Silhouette. We both like our choices. I feel better knowing how it feels and T thinks that the Sure T will work well for him.

12:04 Main event begins. Thymo/placebo infusion begins. Completely uneventful. Vitals every 15 minutes begin. Grady the Superman nurse is back on. He rocks.

1:15 Very sweet nursing student comes in to take T's vitals. She is looks like she is about 12. A Hannah Montana commercial comes on and she says, "OMG, I totally love this show, it's my favorite! I watch all the time.", completing confirming my previous age guess. Reassuring-not so much! So glad for my own experience and Grady's back up.

3:00 Blood sugar 386, 6 units of insulin. T has a headache. C, L and Grandma arrive for much needed visit and snuggle time. Great distraction.

5:00 T is tired, flushed, headache, Blood sugar 492. Not cool. Ordered dinner. 17 units lantus insulin.

5:45 Dinner arrives. 25 units of insulin for correction and food coverage. Not gonna lie- freaks me out a bit. T is feeling crappy but ok. Hungry.

7:00ish C,L and Grandma head for home. They miss Sam arriving with food and coffee by minutes. Nurse shift change. Cheryl is our slave (ERR I mean nurse).

8:15 We start Princess Bride because our good friend Meri says it is the funniest movie ever and we could use a good laugh.

7:45 T says,"Mom my PICC line hurts. It hurts a lot. Into my arm pit and shooting pains down my arm." Call the nurse. Explain. Worry about blood clot. Call attending physician. Check vitals and temp. Vitals ok temp is 99. Worry about administering drugs into potential clotted PICC line, knowing that the chances of it being clotted are really rare.

7:55 Check PICC line and it is fine. T says, "Now my heel hurts, now my other calf, my back." Vitals, temp and realize we are dealing with thymo. The infusion finishes at 8:05. The side effects have hit T like a freight train of swine flu, bird flu and every other crappy virus on the planet. Temp is 103. 4 degrees in 10 minutes. Nurses frantically getting drugs. Demerol, benadryll and ibuprofen. I request zofran knowing that the demerol made him nauseous. Rigors, fever, severe body aches. Get the demerol and benadryll onboard. And then our favorite crappola side effect vomiting joins the thymo-wreaking-havoc party. The zofran just wasn't in time. Because of nausea, T couldn't take ibuprofen to help alleviate symptoms. Everything happened so fast. The staff worked really hard to help out and get things under control. Unfortunately, when things fall apart that fast catching up to the symptoms takes time and is more challenging.
I have never seen T this miserable. DKA looked like a mild cold. T was never in danger as far as his safety like during DKA, his vitals were stable and EKG was fine. He just felt the WORST he has ever felt. I spoke with Dr G at 10 to weigh our options. Trial protocol requires an administration of steroids/placebo (at this point who am I kidding-steroids!) at 12 hours after the beginning of the infusion. Steroids would greatly eliminate the side effects. I hated to give him a dose at ten and then have to dose him again because of protocol 2 hours later. That said, I was ready to do ANYTHING to make him feel better. This was too much to ask. I had been wracking my brain and asked Dr. G about a drug called toradol (sp?), it is an NSAID like ibuprofen but can be administered by IV. I agreed to the steroids and asked for the toradol as well.

10:40 T has had a change for the better. He is able to talk again a little and even managed to smile. He is so strong. I can't even describe how incredibly impressed his family and the staff here are with him. We get the toradol on board. Vomiting still. Blood sugar has gone from 480 to 150. Remember the 25 units of insulin on board. Not cool. Decide to hold off on steroids hoping toradol saves the day. Toradol just maybe T's new BFF.

12:04 Steroids. T still feeling crappy. Went from a 9 (scale 1-10) to a 7. I would sure hate to see his ten. Blood sugar 115- nausea subsided enough we decide to have him eat 2 licorice sticks- 20 carbs.

2:00 T finally has some relief and feels much better. Sleep.

3:00 Blood sugar389. Hello steroids.


The worst should be behind T. Typically the first two days are the hardest. Most people do better with the third and fourth day infusions. We will be even more diligent today as infusion day 3 progresses. Now that we know how symptoms can sneak up from nowhere we will be premedicating with bigger guns sooner.

T and I spoke this morning-I reminded him that this was voluntary and at any point he could unvolunteer with our full support and admiration. He looked at me and grinned' "Are you crazy Mom? I'm half way through- I'm going all the way." I knew what he would say before I asked.