The diagnosis that changed our lives

Type 1 Diabetes is an autoimmune disorder.  I did not know this prior to September 26, 2018.  Oh, I knew about the disease, but only in the abstract as juvenile diabetes.  I even knew someone whose child was T1D and I still didn’t have any concept how much I didn’t know.

That changed with the devastating diagnosis of my 12-year-old son with Type 1 diabetes in 2018.

We missed the signs

Nicholas had been complaining about headaches for several months that we blamed on dehydration and gave him Tylenol.  He had complained about stomachaches that we gave him Tums to treat.  He complained about being thirsty and even wet the bed that summer.   We blamed it on his activity level in the summer.  It took until we went to Hershey Park on a hot Sunday and I saw first-hand how much water he was drinking and how many times he went to the bathroom for me to become concerned.  I will never forget sitting on a bench in the shade waiting for my boys and my husband to ride the Wild Cat rollercoaster and googling “excessive thirst” and seeing information on Type 1 diabetes pop up repeatedly.  I was stunned and frankly in complete denial; no way MY son could have diabetes. 

This all changed when I called the doctor on Wednesday, September 26, 2018 to ask about my concerns.  I was told to bring Nicholas in immediately.  I could literally feel the panic start to set in.  We were sent to the emergency room after the doctor’s visit and it was so very hard to keep it together for my son.  I didn’t want him to see my utter panic or my fear.

Emergency Room

My son’s blood glucose was 568 when he was admitted to the hospital.   Just for reference, a non-diabetic should be around 100.  That’s more than 5x higher. Thankfully we caught his diabetes before he went into diabetic ketoacidosis, many other families are not so lucky.

The next two days were a blur of doctor’s, needles, dieticians, nurses and diabetes education.   I felt so overwhelmed and alone.  Nicholas’ dad left us in the emergency room and my husband, Nicholas’ stepdad was visiting family out of the country.  There was too much to process.  Thank goodness for visiting grandparents to give me a break.

When a T1D is first diagnosed it is important to get their blood sugar under control with insulin.  This can cause the child to become very ill.  It was heartbreaking to see my energetic, happy son lying in a hospital bed with IV’s feeling lethargic and vomiting.  I spent much time laying with him in the bed talking to him and watching movies (I am thankful they had Black Panther to entertain us!).  I held myself together until he fell asleep at night.  Then I would lay down on the couch, research on my phone and silently sob.

Home

My son spent 2 days in the hospital working to get the disease under control.  I was so overwhelmed with all of the information that was shared with us in such a short time, I was terrified when they released him.  We went home with books, papers and charts for the refrigerator.  Too much to process for an already emotionally overwhelmed mom.

In Type 1 diabetes, the body attacks the pancreas, so it no longer produces insulin which is needed to regulate sugars.  There are so many long-term health issues that can result from mismanaged diabetes it’s truly terrifying, everything from blindness to amputation.  So, no pressure.

Every bite of food that Nicholas eats must be counted.  We must calculate the carbs and then determine the amount of insulin necessary to help his body regulate the sugar level.  At first, we used charts on the refrigerator and food scales and apps to count every bite. Nicholas would then measure his insulin and inject himself before he was able to eat.  This was before every single thing he ate.  Gone was the spontaneity of stopping to get ice cream in the summer because we would have to calculate, and it would be another shot.  Nicholas had upwards of 5-7 shots a day in his arms, stomach and legs.  It broke my heart to see the needle break the skin every time.  I would give anything to take this disease from him.

There was also the middle of the night finger pricks to make sure Nicholas’ numbers were stable.  This required setting an alarm for 2 am and getting up to swab his finger, use the lancet and check his blood glucose.  We have to keep snacks in his room to feed him in the middle of the night if his numbers are low.  We use fruit gummies and cotton candy because then I don’t have to worry about choking.  So much to worry about every single day.

Moving forward

I am so proud of my son and the way he has taken control of his diagnosis.  From day one, he gave himself his own insulin shots and calculated carbs and insulin ratios.  Prior to this, I would have said he was a typical scatter-brained 12-year-old boy, but he has stepped up and has never looked back.  He has his bad days where is furious about his diagnosis and who could blame him.  There is nothing fair about it.

But neither of us went down the path of feeling sorry for ourselves.  Oh, don’t get me wrong, there have been days where I have cried and yelled and been so frustrated and so angry that this happened to my baby.  I blamed myself plenty.  Did I eat the wrong foods when pregnant?  Did I not nurse him long enough (it was 14 months!!)?  Was he exposed to something?  And the biggest one, why didn’t I get him the flu shot that year?  What many people don’t know is that T1D is often triggered by an illness, it is an autoimmune disorder after all.  N had gotten the flu in February of 2018 which is possibly what triggered his T1D.  It took me a long time to realize it would have happened anyway. I could not have prevented it and I did not cause it.  This is a tough concept to accept because we always want to find a reason or something to blame; that’s human nature.  I spent a lot of time beating myself up about all of this until I decided I cried enough and had to move forward.

Thanks to great insurance we are able to use all the latest technology for Nicholas, including continuous glucose monitors (Dexcom G6) and an insulin pump (Omnipod).  These have made life somewhat easier in that we are able to monitor his blood sugar every 5 minutes and he doesn’t have to inject his insulin by individual needle anymore. He does have to wear this life-saving technology every single day which has its own host of potential issues.  I will talk about all of this another time. But we are so thankful.

I believe everything happens for a reason.  The second night in the hospital scouring the internet for everything I could find on T1D, I found JDRF and it has been a lifesaver for me and my family.  It has given us a cause to throw our efforts behind.  But this is a story for another day.