Our T1D Story, Part 2

If you missed Part 1, you really should go back and read that post first.

Our Story (Part 2)

Knoxville, TN

March 2015

    Asher was four when (we thought) he was having one of his growth spurts.  He had had them before, but this one seemed to be especially voracious.  He even said at one point, "I'm just so hungry, can't you wake me up at night and give me a snack?"  For Philip's birthday in March we took the family to Tom+Chee where Asher ate an adult sized grilled cheese sandwich with pulled chicken added and when he was done he was still hungry!  We couldn't believe how much he was eating, but we chocked it up to a growth spurt, laughed about it, and kept on with our lives.

    Now in retrospect other things were going on: in Sunday School Asher was constantly asking for water and he had a few nighttime accidents where he didn't make it to the bathroom before wetting his PJs.  At home he had free access to water and could help himself anytime so I never noticed that he was drinking more.  He also could get new underwear and PJs by himself and he wasn't wetting the bed, so I honestly didn't notice how often this was happening.  As long as I could remember he would get up in the night to go potty so I didn't think anything of it.

    After Philip returned for a business trip in March he began putting things together and one Sunday night when Asher got up around 11pm to go to the bathroom Philip said he was going to test his blood sugar.  To my shame, I laughed.  I had forgotten that increased hunger/appetite was a symptom of T1D. We also had been (incorrectly) told that T1D was not hereditary, so I didn't think there was any chance of our kids ever developing diabetes.  

    Philip tested Asher's blood sugar and shockingly the meter said that his sugar was "too high" to be measured by our at home device.  I'm going to be honest, I was still in complete shock and disbelief.  I called our after hours nurse line which refers us to the nurse's desk at Children's Hospital.  The first nurse agreed with Philip...most likely Asher had T1D since mg/dl is mg/dl no matter how old you are and T1D was the only way to explain a high number that would be above the meter's capabilites.  The second nurse gave me false hope, saying that usually a reading like that meant that the test had been performed incorrectly, but since Asher did have these other symptoms we should probably be seen right away.

   Driving into the ER we prayed for a miracle, a mistake, maybe this was just a big misunderstanding and it could be explained by some other sickness.  Hours later at the ER when Asher's blood sugar was re-checked all my hopes came crashing down around me and I clung to the verse that Isaiah wrote, "“For My thoughts are not your thoughts, Nor are your ways My ways,” declares the Lord."  I never would have planned this for my baby.  A life of injections, extra doctor visits, counting every meal and snack, never really eating "freely" again.  The thing I feared most in that ER room was that Asher would lose his joy.  My Father smashed that fear a few minutes later when Philip arrived.  He told Asher that he indeed did have diabetes to which Asher replied, "I have diabete, Daddy has diabete, EVERYBODY got diabete!"  He was in a sleep deprived state of silliness but Philip and I couldn't help but laugh at his joyful reaction.

   Unlike most first time diagnosed patients the on-call endo decided to let us go home since we knew how to count carbs and we would come back the next day for our two-day long training with his new diabetes team.  The team includes his endocrinologist, nurse educator, dietician and counselor.  Every time we visit the clinic (once every three months) we have access to all of these experts which makes the transition to caring for a child with T1D so much easier.

A picture of Asher and I at the ER the night of his diagnosis.

   I'd love to share more info about our story, so if you have any questions please ask them!  I did share our story for one reason and that is to make people more aware of the symptoms of T1D so that no more children go undiagnosed.  Because of Philip's gut feeling we caught Asher's diabetes super-early.  A few months later and he would have been much more sick from this disease.  Upon diagnosis his HbA1c (three month blood sugar average) was only around 10 and they usually don't see kids diagnosed until it is around or above 13.  A non-diabetic's HbA1c is usually around 5.5.  This means that his average blood sugar was hovering around 250 instead of 120 as a non-diabetic, but better than 350 where kids are more often diagnosed.

   If you ever have any worries about your child's symptoms ask your doctor to test their blood sugar, it only takes one drop!

Our T1D Story, Part 1

A few weeks ago two children died because of undiagnosed Type 1 diabetes.  Their stories are heartbreaking, tragic and stirred in me a want to tell our own story so that maybe, just maybe, someone out there could know the symptoms of Type 1 and be able to get a child (or adult) checked before they get too sick.

Our Story (Part 1)

Lafayette, LA

1996

    I needed a date for my Junior prom and my friend suggested asking a boy in our math class.  His name was Philip and he was cool (he liked Pink Floyd) and he did make me laugh, so I decided to ask him.  When my mom and I picked him up at his house and I saw him for the first time in his tuxedo I was blown away!  He was crazy handsome!  Soon after prom Philip and I started dating and 4 years later we got married...but that's another post. 

     I noticed a few things about Philip that were unique: he couldn't sit through a movie without going to the bathroom and he drank almost constantly (during movies, phone conversations, etc.).  What I didn't know is that Philip had been losing weight, about 20 pounds in just a few months.  No matter how much he ate he just kept losing weight. He had a big appetite, but I just thought this was part of being a teenage boy.  We still joke about how he use to eat two whoppers from Burger King and still be hungry.  His mom had taken notice of these symptoms and after contacting the pediatrician Philip was diagnosed with Type 1 diabetes and sent to an endocrinologist.  At his first blood test his blood sugar was over 700.  The normal blood sugar for a non-diabetic is 70-120.
   After diagnosis Philip was put on a special diet that consisted of counting carbs for each meal and two daily injections of insulin.  Later, after we were married Philip got an insulin pump, but he still needs to count carbs at every meal.

   Philip had experienced some of the symptoms of T1D, but here is a longer list:

• Extreme thirst
• Frequent urination/bedwetting
• Increased appetite
• Drowsiness and lethargy
• Sudden vision changes
• Sudden weight loss
• Fruity, sweet, or wine-like odor on breath I would say their breath smells like acetone.
• Heavy, labored breathing
• Nausea/Vomiting
• Stupor or unconsciousness

    "Knowing the warning signs for type 1 diabetes could help save a life! Type 1 diabetes can often go undiagnosed in its early stages because the symptoms can be mistaken for more common illnesses, like the flu....It is extremely important to receive medical attention—misdiagnosis or leaving your condition untreated can have tragic consequences, including death." -JDRF  The good thing about T1D is that it is easy to test for, as a matter of fact, you only need one drop!

Here are some important facts about type 1 diabetes:

• It is an autoimmune disease whereby insulin producing cells in your pancreas are attacked and killed.
• No one really knows what turns Type 1 "on", but we know it isn't diet!
• T1D patients have a lifetime of insulin injections ahead of them.  It is the only "cure" but we are so grateful for it!  Before the discovery of insulin in the 1920s diabetics would only live for months or maybe a few years after diagnosis.
• Even though T1D used to be called Juvenile diabetes, you can really be diagnosed at any age.

Philip has now had diabetes for over 19 years and his day to day life looks much like yours or mine!

Tune in tomorrow for Our Story (Part 2)!