A Diagnosis of Type 1 Diabetes; What does it mean?

We are at the hospital emergency room because the pediatrician sent us here to have them do a blood test to see if our son has diabetes.  They keep asking us why we are here and I tell them because the pediatrician told us to come.  They ask why we went to the doctor and again and again I'm telling them about how I thought he had strep, but it doesn't matter, the doctor thinks he has diabetes.  

They do a number of blood tests on our son who is handling things very well even when they messed up and had to repoke him a few times.  Then, they even put an iv port in his hand in case they need to give him fluids later, and he handles it like a champ watching every step of the way.  

We are there for hours wondering what is going on and what the results may be.  

In the end, the diagnosis is in.  

"Your son has Type 1 Diabetes."  

"Is that the insulin dependent diabetes?"  I ask.

"Yes."  

Was this real?  How did this happen?  I thought back to all of the tootsie roll wrappers I had found hidden in the back of the pantry and of all the candy bar wrappers I had recently found when doing his laundry.  Oh, is it my fault?  I didn't catch him sneaking so much candy!  

But no, the doctors told me there was no way I could have caused him to get diabetes.  It doesn't work that way.  It actually runs in families.  But in our family, there is no one.  He will be the first.  

OK, but what did this all mean?  What were we supposed to do now?  Could he never eat sugar again?  Was this the end to Halloweens, Christmas and Easter candy?  What happened next?  

The hospital staff said they were going to admit our son for the next 3 days!  I was confused by this, as he still had a bit of a fever, but he wasn't acting sick and definitely not sick enough to be in the hospital for 3 days.  Why did they want to do this?  What was going on?  They said for the next 3 days they needed to start giving him insulin and monitoring him to figure out his levels and do some sort of educational training for us.  How do they give him insulin though?  I imagined them hooking him up to IV bags of insulin that they would be pumping through him for 3 days or something.  This was not the case though.  

Really, we didn't know anything about Type 1 Diabetes.  I remember vaguely some times where a friend commented that they were picking up their husband's insulin, and I remember a coworker saying she had to go do her insulin before she ate a dessert, but I had no clue what all of that was really about.  I assumed there was something to do with injecting insulin, but when and how?  

As we waited to be admitted into the hospital we began learning a little bit about what was to come and what we would be doing for the rest of his life.  

It was taking so long that they were going to let him eat lunch in the ER.  But to do this, he had to have insulin.  I remember ordering the meal on the hospital phone and them asking if we were on a "carb counting" meal plan.  I had no idea what they were talking about, but I guess that was the diabetic meal plan.  It sounded like some sort of exercise/diet plan.  As we soon learned, for every carb he ate, he had to have a certain amount of insulin to cover it.  And this was going to be for every meal he ate, and forever.  I couldn't get that into my head.  There was no cure for this.  This was it.  This was forever.
FOREVER.

We watched as the nurse came and gave him a shot of insulin before he could eat.  A vile of fluid, a long needle, and injection---this was something he was going to have to do 3 times a day and then even more?  It seemed unreal.  This was just a teeny view of what we were to learn, as for the next 3 days we were going to be overwhelmed by how much we needed to know and remember.  

I was still thinking he couldn't have much sugar ever again and how were we going to change everything and deal with everything with the rest of my family and kids.  How did this all happen?  Why?  It didn't run in our family.  How could this be?  How would we handle all of it?  I didn't say much in the ER though.  Here was my brave 12 year old who was the one being poked and injected.  I had to be strong for him and make it seem like everything would be OK.  Really, I was kind of clueless anyway, so I figured it wasn't that bad.  I still didn't understand why we had to be there for 3 whole days.  I would soon find out.  

Missing the Signs and Symptoms of Juvenile Diabetes

I suppose there are many parents out there that may be aware of the signs of type 1 diabetes.  I'm sure there are many people who are familiar with diabetes by having some one in the family or a friend who has dealt with it.  I'm sure there are many out there who would recognize the symptoms right away and get their child checked out by a doctor.  Well, we weren't one of them.  We didn't have a clue.  

The signs and symptoms were all there if we had known any better.  They probably had been going on for several months!  Our son was 11 years old at the time.  He was a pretty healthy kid.  He had a little bit of asthma, but nothing major.  

At the beginning of his first year in Junior High School, he began not feeling well on and off.  He would come home from school not feeling well, but then he'd eat a snack and be fine a half hour later.  He would be fine and go to dance classes, but then complain that toward the end of class he felt a little sick.  We really didn't worry because the bouts of not feeling well were so short and sporadic.  It just seemed a little weird.  He was always fine in the end.  

Another month into the school year we started to notice that his hands were all of the sudden incredibly dry.  So dry in fact that we thought he had been chemically burned from some experiment in health class.  We tried all kinds of lotions and creams for months, but his hands continued to crack and bleed and look burned up to his wrists.  

It seemed as if he was awfully emotional lately.  He would get upset by the littlest of things or angry and frustrated so easily.  But then of course, he did have Asperger's Syndrome, a form of high functioning autism, so maybe it was part of that, or he was reaching puberty, so maybe it was just some extra hormones kicking in.  

At dance classes, we looked to see if he would be moving up to the next levels, and the comments came that he was just so thin.  Others around us all seemed to comment on how skinny he was.  We had realized his thinness, but just assumed he was going through a growth spurt.  We were always trying to get him to eat more to bulk him up a bit.  

So, all these little bits of signs were there, but he seemed like a regular happy kid to us.  

When he turned 12, we noticed that all of the sudden he was up going the bathroom an awful lot at night.  We would send him to bed at 9, but then he would be running up the stairs at 10, midnight, 1 am, 3 am.....it was insane!  At first I thought, "Good grief!  What is this boy drinking at night!?"  Then I thought maybe he had a bladder or urinary tract infection.  It was crazy.  I even googled his symptoms and nothing really came up except for overactive bladder or incontinence.  I was getting rather annoyed that the bathroom was becoming such a mess.  He had such urgency that he was rushing to get to the bathroom and was often missing the bowl.  I was cleaning the toilet and floor almost after every bathroom visit!  

This is when I thought something has got to be up.  It's got to be some sort of bladder infection.  He had an appointment with the doctor in the next week for a check up, and so I thought he hasn't complained about any pain so maybe we'll just get him started on some home remedies like cranberry juice or supplements.  

Then he got sick.  He had a fever and wasn't hungry.  His fever was really high---101.8 degrees.  We gave him some motrin and sent him to bed.  In the morning he was worse.  He complained his throat really hurt and we checked his temperature and it was 103.8!  That was enough for me to want to get him to the doctor right away.  But what we suspected was strep throat.  I made an appointment with his pediatrician and took him in.

The nurses and doctor ask you why you are there.  Our initial reason was the high fever and sore throat, but as long as we were there, I commented on the frequent urination and the redness and rash of his hands and wrists.  Might as well get everything taken care of all in one visit!  They did a strep test, examined his hands, and then had him leave a urine sample.  I figured they would come in to tell us he had strep, but that wasn't the case.  Or maybe he did have a urinary tract infection and that had caused the high fever.  I wasn't so worried about his hands.  I thought they might prescribe some prescription cream or something.  

Well, the doctor came back in and I knew something was up because he closed the door.  Pretty much they leave the doors open when we have been there, or maybe I hadn't paid attention, but it just seemed a little weird at the time.  

No, he didn't have strep (at least the initial test had come up negative), his hands were a problem of washing too much with antibacterial soap (which we would later learn it was more because he was going the bathroom so often he was washing his hands way too much), but then there was the problem of his urine sample.  This was it, I thought.  He's got a bladder infection.  But that is not what the doctor said.  

He began talking about something called Ketones and having sugar in the urine or something.  I'm still thinking he has a bad urinary tract infection, but the doctor is going on about things I'm not familiar with and really not making sense, but then he throws out the word "Diabetes".  I'm very confused at why he would be talking about this.  He says we need to take him up to the children's hospital emergency department right now and that if what he suspected were true, that they would admit our son and he would stay there for the next 3 days!?  What?  How?  I was bringing him in for strep throat.  What was going on?  Panicked as we were, but still confused, and a bit thinking the hospital might think differently, we headed on to the hospital with too much running through our heads.