Emerald was diagnosed just before Mother's Day in 2013. She was five years old, in preschool at Lubbock Christian in Ms. Robbin's class.
She had been just not quite herself for a while before. When I took her outside to play after school, she just wanted to lay in the grass in the shade, saying she was too tired to play. She wanted to drink more water, got up more frequently at night to go potty. Her baby fat was beginning to melt off of her, gradually, imperceptibly.
Those were not glaring enough symptoms for us to be concerned; combined, it was worrisome, but in these quiet little isolated instances, it was harder to draw the pieces together to figure out the puzzle. It wasn't until that Thursday in May, when she started wheezing with her breathing, that we took her to the hospital in concern. She passed out on the way there; her blood sugar was 485. She was diagnosed with Type I Diabetes.
As with autism, there are a lot of misconceptions regarding Type 1 diabetes. Before we go further, I will clear a few of those up; it creates the basis for the updated version.
First, Type 1 Diabetes is
not caused by weight, dietary habits, or inactivity. That is Type 2 diabetes. Type I, which used to be known as juvenile diabetes because of its early onset, is an
autoimmune disease (AID), caused by a genetic predisposition.
What happened is that she got some innocuous little nothing sickness. In her body's attempt to rectify the situation, genetics stepped in and convinced the immune system that her pancreas's beta cells were to blame. They got caught in the crossfire; the sickness went away while inside, her body was launching a full-out assault on those little betas.
The beta cells of the pancreas store and release insulin. If they don't exist, there's no insulin production. Insulin is the hormone that takes sugars out of the blood stream and into the cells of the body so they can perform their individual functions.
With Type 2 the body still produces insulin, but it either does not utilize it efficiently or is not producing adequate amounts needed. Type 1, there is NO insulin production. Which means:
- Emerald cannot take pills or control it through diet or exercise; she has to take daily insulin.
- She cannot get rid of the disease, as of current advancement. She will live with it for the rest of her life.
Every day, she gets around four shots of insulin. One variety is fast acting and works directly with her carbohydrate intake--she gets one after every meal, more as needed. The second is a longer acting one. In a typically functioning body, the pancreas stimulates the liver to store sugars for later. It then releases the sugars as you need it. It can also produce its own sugars. That is why starvation takes so long; your body has contingencies in case there are times of too little.
The second insulin is stored and meted out in small amounts to keep your blood sugar stable.
Even if we were to transplant a healthy, happy little pancreas into Emerald tomorrow, the disease still exists inside her and would trash the beta cells again. With an AID, she is considered medically fragile. If she gets sick, even little colds and stomach bugs and things you don't even think about as more than inconveniences, raise her insulin rejection, put her immune system on high alert, and can send her back into the hospital.
Thus ends our crash course on diabetes.
As it has been nearly three years since she was diagnosed, we have become rather old hat at it. We can adjust and track insulin, count carbs, calculate carb-to-insulin ratios, and troubleshoot most little problems that come up.
Recently, Emerald's blood sugar has been going high and crashing hard. For the largest portion of the day, we were having trouble keeping it within normal limits (80-120). Too high can cause long term damage--it shreds blood vessels, damages nerves, leeches water out of organs, causes the blood to become acidic. Too low though, especially in teeny children, can kill you quite quickly.
We have been at the point where looking at Emerald cannot usually give you an indication of where she is at, blood sugar wise. When you go high, you can have blurry vision, difficulty concentrating, headaches, fatigue--things that are kind of hard for an 8 year old to articulate, if she wasn't confused (and usually a little dramatic) at the time. Lower sugars, you are looking more at lightheadedness, confusion, heart palpitations, shakiness...stuff that looks like anxiety.
So, we were keeping an eye on her; I was getting up a few times a night to check on her, just monitoring the situation.
Sunday morning, Emerald gave us a fright--first thing in the morning, she is to test her blood sugar. She wasn't moving quite like she would normally. It was like she wasn't inside her body--no sign of comprehension, no acknowledgement. Michael had to manually take her and do finger poke; her number was 43. I popped a hard candy in her mouth, and she started perking up. Later, she told me it felt as if she had not waken from a dream yet.
The next day, I made an appointment with Emerald's PCP. She ran some blood work, contacted the endocrinologist (specialist that deals with Emerald's diabetes), and gave some suggestions. We adjusted her insulin levels, made some specialist appointments, and waited.
Today we got the results back from the celiac panel--it tests the blood for specific antibodies that are produced when a patient has celiac. Out of four antibodies, Emerald has two.
Celiac disease is something that is getting more media coverage lately, though there seems to be a lot of confusion surrounding it as well. I cannot dispel most of those as I myself know very little about the condition. Two things I do know: It is an autoimmune disease which damages the lining of the small intestine, and it is often associated with Type I diabetes.
This could have a lot of implications. It could mean she has it; it could mean she does not. It could signify a sensitivity to gluten. We might need to change her diet; she may be just fine, just keep an eye on it in the future. We don't know yet. We have to talk to the endocrinologist and a gastrointestinal specialist to decide where we go from here.
If it is celiac, it would explain the low numbers we have been experiencing--if her body is not absorbing the nutrients from certain types of carbohydrates, it would cause hypoglycemia, blood sugar crashes. It seems like an easy fix...ask anyone that has the condition, and it is really not. Modern day is a better time to have it--imagine trying to find almond flour or gluten-free breads in the store fifty years ago. As it is, it is still a costly substitution, and factories and restaurants where food is made often suffer from a significant amount of cross contamination.
My friend even told me today that a lot of makeups and shampoos have gluten in them as well, which could or could not be an issue later on down the road for Miss Emerald.
For now, we are watching and praying. We want what is best for our darling diva, and we know that God has brought us this far, and He will provide.
--Andie
