Type 1 Diabetes Research

My posts have been few and far between lately….mainly because I am a full-time wife, mother, business owner, and student… This semester three of my classes all require extensive paper writing so honestly I haven’t had much time to blog. I have really missed it, so I have decided I will at least try to blog twice a month.

I want to begin with how EXCITED I am about the recent FDA approval for testing the artificial pancreas. This study is already under way in other countries. Although I know it will take some time for testing and for it to be made available to patients suffering with Type 1 Diabetes, at least we are on the road!!

Now, for the naysayers who say JDRF is wasting valuable funds researching this artificial pancreas that could be used towards finding a cure~~ WTH!?! JDRF’s mission is also to fund research that improves the lives of those living with this disease. Without research there never would have been insulin, meters, insulin pumps, medication ect…. All of these discoveries keep our Type 1 loved ones healthy and ALIVE! There is still much research going on about beta cell replacement….which if it works…will help the pancreas make insulin on its own. Research takes time and new developments are happening all the time. I do not claim to be a ‘diabetes expert’, however, I love and am the primary care giver of a child who lives with Type 1 and I make it my business to support, advocate for, and research anything that will make her life a little bit easier.

Ultimately, Diabetes SUCKS!! And when I sit and think about what lies ahead for my daughter~ I cry, I get angry, I even scream sometimes…my job is to protect her and there are times I feel helpless. But then I remember there are so many other diseases out there and many other parents who’s children are suffering with untreatable, incurable diseases and I’m thankful that at least we can somewhat control diabetes and I believe we will see a cure. And we are blessed that more and more options are on the horizon.

JDRF First Outpatient Artificial Pancreas Trial Approval

Diabetes is Ugly

Diabetes has been showing its ugliness.....The last few weeks have been a roller coaster for Alyssa's diabetes.  The week before last, I got a call from school 4 out of 5 days saying that Alyssa's glucose levels were high....300 + every morning at around 8:30a.  She eats breakfast at 6:30a and gets 2 injections (regular insulin and then a long lasting insulin).  So, her sugar should have been within normal range 2 hours later?  Over that weekend, her levels were great!  Last Monday, I decided to up her regular insulin .5 units (a very little) and I got a call at 8:30a saying her sugar was low. ughhh...so on Tuesday, I backed down the dose....8:30 ~another call and low!!  Wednesday and Thursday, the same thing.  Weekend was pretty good, a few highs but in the low 200's and likely because she snacked a little more.  This Monday morning, a call at 10:00.... sugar was 59! Lowered insulin from her normal dose and Tuesday no call!  Thought we were in the clear! Wednesday was an early release day, so I kept her home from school because it would mean she would have to eat lunch at 10:45a, which throws her whole schedule off.  Levels were great!  Yesterday, call at 10a, sugar 300!  What the heck!!  Today (Friday) same thing!  I swear, I'm losing it!  What is insane is that these extreme lows and highs are effects of a minute amount of insulin!  The picture below (on the left) is the actual syringe scale.  She gets 1 unit for every 25 grams of carbs, usually 2 1/2 units.  So,as you can see, 1/2 u is a tiny amount. 

Those of you who know me and Alyssa know that I am borderline obsessed with managing her diabetes.  I measure EVERYTHING she eats and have learned to adjust for her activity levels.  Thank God we have a great Endocrinologist!  I know I've called and emailed her 10+ times.  Finding that perfect dose has been a challenge and unfortunately what worked one day, has not been working the next!

I'm at the point I think there is another culprit besides the pancreas. I know stress can elevate glucose levels. The blood sugar of type 1 diabetics can increase when they’re stressed because of the production of stress hormones. In most people, these hormones help improve the body’s stress response because the liver releases more glucose for additional energy. For diabetics, however, this extra glucose can result in a dangerously high blood sugar level.  My husband was in the Middle East for 2 weeks, and I know she missed him.  I tried to keep as much from her as possible, but she knew that he was in dangerous areas at times.  Now that he's home, I'm hoping things get back to normal and that her glucose levels balance.

We made it through the holidays!!

Happy New Year!!

Again, it's been a while since I blogged....

Alyssa was diagnosed just 3 days after Christmas in 2010.  Facing the holidays in November and December were pretty scary as this would be our first Thanksgiving and Christmas since her diagnosis.  I feared that we wouldn't be able to take part in all the holiday baking traditions we had in previous years.  Alyssa loves to help me bake so I began to search for recipes for our family's favorite holiday desserts where I could substitute out sugar.  We did make regular peppermint sugar cookies and yes Alyssa did have 1 here and there, but we adjusted her insulin.  She said it was totally worth it!!  Alyssa also loves chocolate pie, so I found a recipe for chocolate chess pie and substitute the 3 cups of sugar with Splenda.  A little sugar-free whipped topping made for a happy girl!

Santa was on board this year, and instead of filling her stocking with loads of candy, he opted for hair accessories, lip gloss, nail polish, bracelets, and coloring books.  She was ecstatic! And you know what??  She never once asked about where her candy was, even with her brothers who had chocolate and candy canes in theirs.  I do let Alyssa have sweets occasionally...everything in moderation.  I try to keep her diet as 'normal' as possible.  The time of day, her activity level, and bgl just determine the amount of insulin or if any is given.  Her endocrinologist assures me she is doing great, her A1C was 8 at our last visit (within range for someone her age) and she's growing so tall.  She has gained up to 59 lbs, which is a little on the low end, but like her Endo said, not many 8 year old's are on this strict of a diet.  In Sept. 2010, (pre-diabetes) she weighed 56 and then in October she weighed 52 (during our journey to find out why she was sick).  The day she went into the hospital she was down to 46lbs.  So, I think gaining 13lbs in the last year is pretty good.  Trust me, she eats ALL the time!  Her food is just healthier options, controlled carb intake, and very little sugar.

Looking back on December 28, 2010 I'm blown away by how different our lives are.  Honestly, at that time, I did not think I could handle this situation-- this illness that would change Alyssa's life forever.  But today, through education, research, support, and Alyssa's amazing endocrinology team, I feel optimistic for her future.  Those that know her, know she is a FIRE CRACKER and even though she drives me crazy at times :), she continues to amaze me with how she has learned to accept what life has dealt her.

What's been going on....

Well, it has been a while since I've blogged.... I've been a very busy girl.  Since my last entry in September, we participated in our first walk for diabetes.  Our team, Alyssa's Angels, raised about $2400!!  We are so grateful for all the people who donated and for all our family and friends that walked with us!!

A lot of things have changed around her since I went back to work.  I can tell you that my husband has really stepped up and helped me around here.   Outside of the classes I have at the college, I also am taking 2 online classes.  So, much of my time at home is spent studying and doing homework.  He's cooked many dinners, kept Alyssa when she was home sick and taken the kids to doctor appointments so I wouldn't have to leave work.  He's self-employed, so his schedule is much more flexible.  The kids have also had to do a lot more.  I created a spread sheet with the monthly schedule and chores.  My oldest has saved me several times when I wasn't sure I'd get to after school care to pick up Alyssa in time....so glad he can drive!!  Trust me, he's super safe now that he's had a car wreck and had a deer hit him!

We had a little break!!  Hubby and I took a trip to Key West and Alyssa spent several days between her 2 grandma's.  The grandmas did a great job taking care of her!!  It was a nice break for us and I'm sure for Alyssa too.  The poor thing never gets to spend the night away from home....

Back to reality......Alyssa has adjusted well to our new busy schedule.  Right now my schedule consists of morning classes and working 32 hours a week at a medical office.  Everything has been going along smoothly until we had a battle with a cold last week that threw her sugar off the charts!  Just when you think you have a handle on this disease, it throws you something else.  She made it through only 1 whole day of school last week, came home early Monday of this week with a level near 400, but thankfully she's been well since Monday afternoon! 

Alyssa has been taking gymnastics once a week for the last 2 months, but beginning next week we are going to add a private lesson as well.  She is really enjoying it and learning so much!  Because her glucose levels are so sensitive to activity, we check levels and give a snack to cover what she'll burn during the class.  Then re-check after class.

The clinic I work at is an integrative health practice.  I have learned so much about the holistic approach and I am currently researching the effects of chromium on diabetes.  What I have found so far is that it is an insulin potentiator, so it makes the body's own insulin production go further.  I'm still researching.... 

Strep Throat & Diabetes

So, Alyssa woke up this morning with a fever and sore throat!  She has had sniffles for the last few days, but so has everyone in my house.  I was hoping it was just allergies, but when my hubby took her to the pediatrician this morning they gave her a strep test and it came back positive.  So, now she will be taking amoxicillin for the next 10 days and out of school until Monday.  My oldest son also had a sore throat and stayed home from school, so their doctor went ahead and prescribed him an antibiotic as well and suggested he stay out of school until Monday too.  At least he can stay with her tomorrow while I am at school. 

Catching a cold or the flu is no fun, but it can be even worse if you have type 1 diabetes.  Some over-the-counter cold treatments contain sugar, which can make blood sugar levels higher.  Also, dehydration, fever, and nausea can cause blood sugars to rise and for ketones to be released.  Colds can lead to pneumonia and other serious health problems.  People with diabetes are three times more likely to suffer from these conditions than non-diabetics. 

This afternoon, she said she felt shaky as if her bgl were low.  But when we checked her levels it was 134??  And when I checked her temp, it was 102.  It was close to dinner, so I had her try to eat.  I’m always concerned when she isn't feeling well that her levels will drop, but it always tends to run a little higher.  Crazy! 

Anyway, she had some children’s ibuprophen and her first dose of amoxicillin and was able to eat a bowl of chicken noodle soup and some orange slices.  Thankfully her fever is down for the moment…..keeping my fingers crossed!    

Mom Going Back to Work: Afterschool and Diabetes

So we are in the 3^rd week of school.  Alyssa has adjusted well to her school schedule.  I recently started working part time in the afternoons, so she has also started going to after school care for the first time in her life.  The great thing is that one of the diabetes care managers at her school is also the director of the after school program.   

Alyssa also started cheer & tumble.  I’ve made sure I check her sugar and give her a snack before the class so that her levels stay balanced.  We’ve have 2 classes and she hasn’t gone low either time.  When she was first diagnosed, she was in the middle of basketball season and even with snacks beforehand, she still ended up going low.  We ended up giving her 2-3 snack during 1 practice.   I think it was the honeymoon period, so now she’s a little more leveled off.

I had a project this week that had to be on a medical specialty.  Of course I chose Pediatric Diabetes.  I am not one that enjoys talking in front of a class, but it was a little easier because it was a topic that was so important to me.

We are just 22 days away from our first JDRF walk.  If you have donated I want to thank you from the bottom of my heart.  More than 13,000 children are diagnosed with Type 1 every year and it is important that we find a cure!  We’ve risen just over $400 through the internet in Alyssa honor.  We feel so blessed that so many people love our baby girl!  We also have more than 20 walkers signed up to walk with us!  It’s very emotional for me to think about our friends and family that are willing to take a stand against this disease and support the research that will lead to a cure.  I love you guys!!

I’m working on T-shirts for Alyssa’s Angels!  I’ll post pictures once I get the final draft!  So, my life’s a bit crazy right now, but I am excited about everything that is going on!

English Writing Paper: Juvenile Diabetes Journey

As you know, in addition to being a full time mother, I am also a full time student.  I wanted to share a paper I am working on for my English Writing class.  Most of the details you already know, but this paper goes a little more in depth.  Alyssa's first few days of school have gone off with out a hitch!  I'm looking forward to us both having a great school year!

Juvenile Diabetes Journey

My daughter came into this world fighting on June 15, 2003.  She was born five weeks early and because of that, her lungs were not fully developed.  She spent the first two weeks of her life in the NICU connected to tubes and wires that supplied her with oxygen and nutrition.  My heart was breaking as I watched her lay in a dome covered bassinet, knowing I couldn’t hold or touch her.  When I asked if she was going to make it, I was told by the doctors that it was in God’s hands.  So I prayed!  And fortunately, my prayers were answered.  She was born a fighter and to the amazement of all the NICU doctors and nurses, was soon able to come home.

As soon as Alyssa could move, she followed her two older brothers around.  She wanted to be with them, do what they did, and be just like them.  One time, at the age of two, she pulled off her shirt wanting to join in with their basketball game.  I had to remind her that she was a little girl.  Although she had a bumpy start to her life, she was a healthy, beautiful, rough, and tough little girl. 

A few months before she was to start kindergarten, she was jumping on a trampoline with her brothers and broke her leg.  She didn’t break it by falling off of the trampoline, but by landing on her own leg.  When she was in the first grade, she slammed her fingers in a cabinet and broke two of her fingers.  Most recently, this summer she fell off of her bike and broke both bones in her arm.  There has not been a cast that has been able to her down.  She always has somehow overcome what life has thrown at her.

In late October of 2010, Alyssa started wetting the bed. I honestly thought it was just a stage she was going through, even though she had never had a problem since potty training.   In all reality, this girl always played hard and crashed with exhaustion at the end of the day, so I assumed she was just tired and sleeping through it. She also seemed to be getting taller and with that, she seemed to be thinning. She was already petite, but seemed to be losing her full, baby cheeks.  In early December I started to notice Alyssa's appetite had decreased, but she always seemed to be thirsty.   By Christmas, Alyssa was drinking anything she could get her hands on.

Two days after Christmas, I took her to her pediatrician. They checked her glucose levels and her urine for ketones and immediately directed us to the emergency room. It all happened so fast and that was the first time I heard the words Juvenile Diabetes.

In the emergency room, Alyssa’s eyes filled with tears as she asked me, “Mommy, do I have to sleep here?”  It was a painful question to answer.  She was terrified and confused and I felt helpless.  I would’ve taken it from her if I could.

Alyssa was admitted into UNC Children’s Hospital and honestly the next four days are all a blur.  Her father and I were bombarded with information on diet and nutrition, blood glucose levels, meters, insulin injections.  We spoke to countless doctors, nurses, nutritionists, and diabetes counselors.  We were given stacks of pamphlets, brochures, and diabetes cookbooks.  I felt as if I was in a whirlwind.  I wasn’t sure if I could handle this.

Juvenile Diabetes, also known as Type 1 Diabetes, affects children and is normally onset at a very young age.  It’s a condition where your pancreas no longer produces any or very little insulin, a hormone that allows glucose to enter the cells and produce energy that you need to survive.

As parents, it’s our instinct from the moment our kids are born to protect them from any harm.  How could I do this when she was going to have to take four injections of insulin a day and have her fingers pricked six or more times a day?  Everything she consumes will have to be measured and calculated.  She would have the potential of heart and kidney disease, amputations, blindness, and early death.

I do remember the first night that we spent in the hospital.  My sons are both teenagers, so they were old enough to stay at home overnight alone.  Both I and my husband chose to stay in the hospital with Alyssa.  On our way up to her room, we passed other children’s rooms that were all decorated for Christmas.  On one of the doors was a sign that read, All I want for Christmas is to go home.  I couldn’t help but look into the room and it was apparent, at two days after Christmas, that this poor little boy’s Christmas wish didn’t come true. 

After Alyssa drifted off to sleep that night, my husband and I sat on the cot processing the day’s events.  It was as if we were reading the other’s minds.  We had both seen the same little boy, both had seen the sign on his door, and both said at the same time, “This could be worse.”  Our child had a disease that was manageable, although it wasn’t going to be easy, she could live with it.  And she was going to come home.  There were so many children in that hospital that would never see their homes again.

While we were in the hospital, Alyssa was given a little blue back pack that had a few things to help her adjust to her new life with Juvenile Diabetes.  It was called the Bag of Hope and inside was a children’s book with stories about a bear that had diabetes.  It included educational materials and DVD’s that we could read and watch at home. Also inside was Rufus the bear, a cuddly brown, stuffed animal that also had diabetes and was the main character in the book.  He was wearing a medical alert bracelet, a JDRF (Juvenile Diabetes Research Foundation) t-shirt, and he had patches on the back of his arms, his thighs, and his stomach; which are some of the locations that insulin injections are given.  Rufus the bear was a huge comfort to Alyssa.  She carried him with us around the hospital and he slept with her every night. 

When we came home from the hospital, I contacted Alyssa’s school because I was not sure what the protocol was for students that had diabetes.  The principal was very helpful and we set up an appointment to meet with her, the school nurse, and Alyssa’s teacher.  The process of her returning to school moved smoothly, as there were two other students in her school that also had diabetes.  Her teacher was trained and jumped right into monitoring Alyssa’s care. 

One afternoon Alyssa came home from school and said that lots of her friends were asking about why she was having snacks and why she had to go to the office every day before lunch, so she asked her teacher if she could read her class the book about her bear Rufus.  Alyssa read the book to her class that day and the next day she took Rufus to school.  She had accepted her disease; she wasn’t trying to hide it, and even at the young age of seven, thought it was important to educate her classmates.  I told her that I was very proud of her.  She looked up at me and said, “Mommy, I’m still the same girl.  I just have diabetes.”  After she told me about her experience at school, I began doing research about JDRF. I truly believe that the care package that she received in the hospital that included Rufus influenced her immediate adjustment 

The JDRF organization has been such a huge help to me.  They have tons of resources for parents of diabetics, information about advances, and they are the largest contributor to diabetes research.  Through my investigation, I found that a cure for this disease is within reach, I believe we will see it in Alyssa’s lifetime.  I decided that I had to be proactive in a search for that cure and joined JDRF as an advocate.  We, as a family team, “Alyssa’s Angels”, will also be taking part in our first “Walk to a Cure” in October.

Alyssa rarely complains.  She continually amazes me and is a blessing to have in my life as a daily reminder of life, humility, and a positive attitude.  My life has changed tremendously since her diagnosis.  There is nothing more important to me than my family and this has brought us all closer.  And, hopefully one day there will be a cure for my baby as well as all the others that face this disease every day.  I feel confident that one day I will be able to say, “My daughter used to have diabetes.”