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!!!

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.

 

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.

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.

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.

"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.

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.

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.