TRIGR – 10 Year Antibody and Glucose Tolerance Test

The fear of any parent with a chronic disease is that they will pass it on to their children.  While I have learned to live with T1D, and my wife has learned to tolerate me…..The last thing we want is for our children to bear the burden of living with the same hurdles in life I have had to.

The TRIGR study is a prevention study focused on the comparison between breast fed children, during the first year after birth, and those who drink cow’s milk based formula.  The hypothesis is that the cow’s milk based formula, having more complex proteins than human milk, tax the system and increase the risk of developing diabetes for those children with the genetic markers, and therefore, are already at risk.

Knowing the risk, we enrolled in this study through my childhood Endocrinologist and researcher, Dr. Dorothy Becker.  She always told my parents and I, “My job is to myself out of a job”.  That’s the same line she uses today.

They took a sample from the cord blood at birth, to determine whether or not Jake had the genetic predisposition, or the marker, to develop T1D.  Honestly, I enrolled in the study, not to have the annual blood work done, but to hopefully get kicked out of the study because he didn’t have the marker.  No such luck.

 

 

 

 

Jake - After 1st Blood Draw

So, every year, around his birthday, Jake endures a blood draw to test his blood glucose and to have his blood tested for antibodies known to cause T1D.  There are five (5) antibodies, that in combinations of 2 or more, are known to increase the risk of developing T1D.  The risk rises from 5% to 50%.

Two years ago, Jake started developing two (2) of the antibodies and those same antibodies were visible last year as well.  I’m not flat out saying that my wife and I are a nervous bunch, but there is a reason we fight to raise money for JDRF.

 

 

 

 

 

Jake3

This year, in addition to the blood draw, he also had to have a glucose tolerance test.  Similar to the pne high risk Mom’s take when they are tested for gestational diabetes.  It is fasting, they take your blood, then make you drink a gross, sugary drink and then return for more blood later.  He drank the drink and hardly complained.

Jake4

So, random thoughts.  My daughter also has the same antibodies being produced by her immune system.  She has been tested in the TrialNet study.  I wonder…..are these the antibodies that my body produces?  Or produced prior to my diagnosis?  We don’t know.  I’ve never been tested for antibodies.  When I was diagnosed 30 years ago, they didn’t have antibody tests.

 

 

 

 

Jake5

 

The first blood draw showed a blood glucose of 90.  The second draw, unfortunately, they didn’t test his blood at the house.  They will be doing so at the lab.  So we wait for the results.  We also have to wait 4-6 weeks for the antibody results to come back.  Again, not too anxious…yeah right.

The benefit of having our children in these studies is that they are finding, for those who are diagnosed with T1D, they are being diagnosed without traumatic events.  Instead, they are being diagnosed during or after these screenings, prior to any significant diminishing health status and without ER visits.

Within the next year, they TRIGR research team is going to be releasing the first round of results.  The intent is to gain knowledge about how we might be able to reduce the risk for those we know are at risk.  And with 80 people being diagnosed every day (40 kids and 40 adults) there is an increase in prevalence, and this information is severely needed.

For more information on the JDRF, please visit www.jdrf.org

To make a donation to a JDRF fundraiser, please visit: https://runsignup.com/Race/NJ/LoganTownship/MikesMilesfortheJDRFCedarvaleWinery5K1MileFunRun

National Day of Service – A Plea for Continued Change

Today was an incredible day.  Regardless of political persuasion, you have to have respect for the fact that the President of the United States was sworn into office today. (Ok, yes, he was sworn in yesterday in a private ceremony because the constitution says that the POTUS is to be sworn in on the 20th day of January.)

And it was Martin Luther King Day.  A day to remember one of the most historic movements in United States History.  In a time when many of our heroes are falling down, it is wonderful to remember a man who made so much positive change in the world.  Dr. King once said, “Life’s most persistent and urgent question is, ‘What are you doing for others?'”

And this is what has spurred the President’s National Day of Service.  Today is a day for people to come together and serve to help their friends, neighbors and community.  I urge you to take some time and give back.  Do it in a way that makes sense for you.  What do you care about?  Who is important in your life?  How can you make positive change in the your world?  Small gestures make big changes for the people you serve.

It is no secret that my service lies with the JDRF.  You hear of what my family faces on a daily basis due to living with T1D in the family.  This is a 24/7 disease with no breaks.  There is no time off.  Ok, maybe I received some time off during the artificial pancreas trial, but that is not a normal situation available to everyone, and if I am to share one statement from that experience?  “Every T1D deserves to get some time off!”

header_logoT1

So I pose the question, “Is a National Day of service enough?”

I just am not sure that is the case.

So, I will ride, and run to provide my service to the JDRF.

And here are the events I will do:

Tobacco Road Marathon, March 17th, North Carolina.  Donation:  http://jdrfevents.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=15437

April Fools Half Marathon, April 7th, Atlantic City, NJ. Donation:  http://jdrfevents.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=15620

Mike’s Miles 5k at Cedarvale Winery, April 20th, Logan Township, NJ (My wife organizes this one):  Registration:  https://runsignup.com/Race/NJ/LoganTownship/MikesMilesfortheJDRFCedarvaleWinery5K1MileFunRun

JDRF Ride to Cure Diabetes, July 27th, Burlington, VT.  ride.jdrf.org

JDRF Ride to Cure Diabetes, September 21, Nashville, TN.  ride.jdrf.org

If you are able to give back to your community, I urge you to do so.  There are so many ways:

1. Coach your kids ball team

2. Serve at your church or synagogue

3. Volunteer with a local non-profit you believe in

If you are part of the T1D community, I believe you should volunteer with the JDRF.  Those of us living with T1D over the last 40 years have reaped the rewards of volunteers before us serving diligently and tirelessly with the JDRF.  Knowledge gained is from their sweat and determination to make it better for those that came after them.  They have succeeded.

Find a way to use your skill sets that fit you.  The above list has developed from my skill sets.  I enjoy health and fitness activities.  I am a runner and cyclist because I need to focus on reducing my cardio vascular risk factors.  The JDRF needs coaches and volunteers to help with their endurance programs.  Good fit.

If we, the T1D community, don’t pick up the slack and volunteer and fight for ourselves and our family, who will?  Why would anyone fight for us if we don’t fight for ourselves?  THERE IS NOT A CURE, and WE NEED YOUR HELP.

Today I am asking everyone in the T1D community, if you haven’t worked with the JDRF, to volunteer with the JDRF and help them make positive change for the world we live in.  Fight for yourself, and fight for your family.

Emotional Response and Physiology of Training with Hyperglycemia

First 20 mile run today for the JDRF / AllScripts Tobacco Road Marathon on March 17th.  In spite of continued high BG during the run, I kicked T1D butt today and got it in!  At mile 14, it was 300 and rising, T1D thought it had me, but by proper use of the CGM, I made the necessary adjustments and turned the tide on my nemesis.

–Now.  That is my emotional response to this high blood glucose event.  I am proud to say that I was able to finish the workout, but in hindsight, there were a couple of failure points that limited the impact of this workout.

Let me clarify a few things:

1. First 20 miler with a CGM

2. My BG = 60 when I woke up this morning

3. I over treated for my BG, and turned down my basal rate too much

4. My intent in running this marathon is to beat my wife’s time from her last marathon, which I know I am capable of doing, but have never before.  This type of training, takes constant focus on BG levels so that I can gain the most out of my workouts.

By the 14 mile mark, my BG was 300 and rising.  I had not had any fuel throughout the run.  My legs were toast.  Here’s why:

I didn’t have enough insulin in my body to transfer the glucose from my blood stream to the muscles to be used as energy.  So, the liver starts to break down fat and proteins to be used as energy. This results in excessive acid in the bloodstream and the start to the very dangerous situation of diabetic ketoacidosis (DKA).  In 30 years, I haven’t had to deal with DKA, and today wasn’t the day to start.

I had to get fuel in to continue my workout.  I had to get my BG down to fuel appropriately.  However, I just ran 14 miles, how much insulin to I put in?  What do I do with my basal rate?

Extremely important questions, with even more important answers.  Here is what I did to get my BG down.

Small.  Small changes.  Small bolus, and small raise in the basal rate.  I kept running and pushed through the dead feeling of not having fueled during the run.  More about that shortly.  However, soon my BG was leveling off and then slowly dropping.

My fear, after not having fueled during the run, is that I was causing more damage to my muscles than I could recover from before my next workout.  I am looking to improve…..not damage beyond repair.  So, I fueled during the last 5 miles of my run, after I was sure my BG was dropping.  I then had my recovery protein shake when I got back.  A recovery shake is supposed to be consumed with 30 minutes, and I made sure I took advantage of that window to get fuel into my muscles.

The failures points from today?

Over reacted to my low BG.

Over compensated before my run with lowering my basal too much.

Not making a basal rate change when the CGM said 264 with an up arrow.

12 Hour Look Back

12 Hour Look Back

Success points of the day?

Having confidence that a little bit of insulin would go a long way.

Getting fuel in as soon as I could eat it.

Smart fueling and basal adjustments post run.

Important Notes:

Success is gained from information.  Information for a T1D is in more BG readings and the CGM device gives me as much as I want to read.  I am extremely fortunate that I have access to the healthcare that allows me to use this device.  It is incredible how far T1D care has come with the backing if research by the JDRF.  I fought wearing a CGM for years, and now I hope I never have to give it up.

Stay tuned for tomorrow’s post, on the National Day of Service, to see what I plan on doing about the future of T1D.

2012 – Thank You!

I just wanted to take the time to say Thank You to all of the Chadwick Family, Mike’s Miles, JDRF Ride to Cure and South Jersey JDRF supporters.  2012 was a successful year and it was all due to your willingness to give.

What you saw in 2012 is an example of what kind of research the JDRF is supporting in the Artificial Pancreas, TrialNet and TRIGR.

These are studies my family is closely tied to because 1.) I would love to be able to control my blood sugars to the range of 6.5 – 7 without any effort (The range seen in the studies I participated in, for adults in the study).  2.) My children are at an increased risk of developing T1D, and I would do just about anything for them not to have to endure what I have.

However, your support is even more special to my family because we, and the JDRF are fighting for a cure for T1D.  They have been focusing on Immune and Beta Cell Therapies.  And until they find a cure, they are helping me and my kids (if they are diagnosed) stay healthy until there is a cure.

What's on the Horizon?

 

Everyone with T1D is scared of what is over the next hill, whether its a steep hill or a South Jersey hill.  The JDRF is helping those of us living with T1D get rid of the fear of what’s over the hill.  However, non of it would be possible without your help.  So, THANK YOU!

And stay tuned, more exciting events are coming in 2013!  I can’t wait to share them with you.