2009 - Oldest Daughter Dx

December 6th, 2009 - It is three weeks before Christmas.  Our family is shopping at a store that is just for girls.  My daughters are looking for a birthday present for one of their friends.  At the same time, my husband and I are secretly shopping for Christmas presents for our daughters.  The store is crowded and it takes a few minutes before we get to the check out counter to pay for our things.  Our saleslady is very friendly and asks our daughters what they want from Santa for Christmas.  When it is my oldest daughter's turn to answer, I notice that she isn't hearing anything.  I call her name and she doesn't answer so I call her name even louder. 

She looks at me and starts to cry.  She sobs, "I need my sister's tester.  I feel low."

My husband and I shoot each other a look.  Our daughter's tone is urgent and she is not one to volunteer for a poke.  We immediately leave the store and walk directly to our car.

We settle into the car and I pull out my youngest daughter's blood sugar meter.  As I am changing the lancet, I start mentally counting how many hours since breakfast, then I remember the snack in the car on the drive to the store less than an hour ago.

The meter whirs and I click the lancet down on her finger, noticing how smooth the skin looks compared to my youngest daughter.  The five seconds it takes to get a blood sugar number feels like eternity. 

58.

It is not what I expect.  Feeling uneasy, I say, "Well, it isn't over 200."  The family decides to eat and we pick Red Lobster as my oldest daughter loves shrimp.  It seems right to let her have her choice because for the first time, she is the one having the low blood sugar.

We eat and while I mostly push food around on my plate because I am unable to shake the uneasy feeling, I take  notes on what my oldest daughter is doing.  She is eating and eating and eating.  Her food, her milk, her dessert, a few bites from her sister's plate and a few from mine and my husbands.  I try to tell myself this is because she is in a growth spurt but it doesn't make sense.  She is tiny and seems even smaller lately.

We leave and decide to walk around our mall.  My plan is to keep us out for at least two hours so I can retest her blood sugar. 

The girls take a turn visiting with Santa and we pick up a few additional Christmas presents.  As soon as we are back on the highway, I suggest rechecking our oldest daughter's blood sugar.

The meter whirs again.  Click.  Beep.  174. 

At this exact moment, I recognize that our life has once again changed forever.

Having a few years of Type 1 Diabetes knowledge under our belt, I know that I can call our Endocrinologist when I get home, even after hours, which is comforting.  When I do call, I lie and say I am paging the Dr. for our youngest daughter who is already diagnosed.  The Endocrinologist returns my phone call in less than five minutes and says she is surprised to hear from me (I stopped calling during the first year of youngest daughter's dx for no reason other than we had a handle on her blood sugars).  I apologize for lying and explain what is going on and reassuringly, I am taken seriously.  The Dr. and I put together a loose plan of action to figure out what the blood sugar readings mean and in the meantime, I am to record random blood sugar checks in order to obtain more data.

A few weeks later, our oldest daughter is checked in as an out-patient to our children's hospital.  She is given an IV line, told to drink glucola and her blood is tested for GAD antibodies, C-peptide levels, A1c, and her blood sugar levels at one, two and three hours for an OGTT. 

While we wait out the time required for the testing, I notice little things that slipped by before... fidgeting, antsy-ness, inability to focus and oddly, a strange sort of lethargy.  Our oldest daughter, at 8 years old, just wanted to be held all of the time.

The call with the results comes a few days later.  When I see the number on the caller ID, I know.  Calmly I answer and discuss next steps.  The diagnosis is Pre-Type 1 Diabetes.  Our official diagnosis doesn't arrive until April 7th, 2010 - which ironically is the exact same day that my father died.

The next few months are much of the same.  We monitor blood sugars.  I keep a detailed log and carefully switch her diet over to one that is similar to what type 2 pre-diabetic would eat.  Protein heavy mini meals with a healthy dose of water and exercise to keep blood sugars stable.

I also start researching and connecting with everyone who might be able to stop the diabetes train from crashing.  Sadly, each person that I meet with explains that there is virtually nothing that can be done to stop type 1 diabetes.  The only hope was to delay onset.

Delaying onset doesn't seem to be an option.  With blood sugars slowly trending upward despite my attempts to control them, our oldest daughter starts experiencing two serious symptoms, migraines and stomach pain.  The sudden rise and fall of her blood sugars are to be blamed.  They are debilitating to the point of where she feels no interest in going to school or playing with friends. 

We examine a few type 1 studies.  One involves our family heading to Yale for an initial month long process to be part of the closed-loop pancreas experiment.  The travel time is lengthy and I worry about absences from school, friends and family.  The second study is local but it requires an IV treatment.  I worry about the psychological effects that this would have on my daughter.  None of this seems right and our family mantra keep playing over and over in my head.  Kids first, diabetes second. 

We make a decision to let the diabetes train crash.  I start to wish for high blood sugars just so we could start insulin and alleviate the swings.

In late June, we reach the high blood sugar threshold point.  Our Endo team isn't sure if she is ready for insulin but we decide to bolus 1/4 unit of Apidra insulin to see if it would help with mealtimes.  It did and gradually over the next few weeks, we are able to give a 1/4 bolus three times a day with good results.

By July, we are ready to start pumping.  Our thought is to ensure an accurate dose using the precise help of an insulin pump.  Drawing such a small amount of insulin, without air bubbles, into a syringe is impossible. 

Another helpful tool for pumping is shutting off the nighttime basal rate.  From 3:00 a.m. - 6:00 a.m., our oldest daughter received no insulin.  We did that until around October.  Our daughter has never used a long acting insulin due to this procedure.

Our oldest daughter's entry into the world of type 1 diabetes was handled as gently and gracefully as possible.  She never did go to the hospital and even her pump start was done in the comfort of our home.  

To this day, we marvel at how well it has gone and how having just a few extra months made all of the difference in the world. 

This also defines one my biggest life regrets... I wish I had known about Type 1 Diabetes sooner for the sake of my youngest daughter's health and post dx recovery.

This is our second beginning (or Chapter 2).

4 comments:

Michelle- The Rockin' Ink Star said...

Impressive!!! Good job mama!

Naturally Sweet Sisters said...

Much easier landing after you have had one to practice with. On a side note, I finally met the wonderful Dr. Tamborlane that took my phone call, sight unseen, to help guide the initial direction of this diagnosis. Such a nice man on the phone AND in-person. The DOC makes this so much easier! Thanks for the kudos.

Andrea Cummings said...

My son was recently DXed at age 5.5 (he's almost 6 - in August!).

Right away, I knew. I knew almost 2 weeks ago, but spent a week and a half having my husband tell me I was being nuts, and we rationalized it away to thoughts like, "It's summer...of course he's drinking more! He's having a growth spurt! He's stressed out and bored, that's why he's being naughty!"

But I knew. And when I called my pediatrician, told them what I had seen, I even said, "Can we just do a urinalysis to prove I'm wrong and crazy?" Instead, our lovely nurse said, "I want you in right away. Get a urine sample."

Our doctor...she was amazing. She's been with us since he was born, and she will continue to support us. I'll never forget the look on her face when she said, "His blood sugar is 896. We need you to go to the ER at Childrens' hospital right away - I've already called ahead. They're waiting for you. It will be scary - they'll start testing, and connect to an iv the second you are in the door...he'll be covered in wires, but you can do this. You call me when you are home. You will be okay. HE will be okay." I wish I could hug her right now.

My only fear now is that my daughter will also be type 1 - they told us at the hospital that it is rare for sibs to both have it. But I had two friends in high school who were T1, and now I find you...I am sad. But we got this!

Elzani Meintjes said...

Your story is amazing and very similar to my own. 16yrs ago my sister and I was diagnosed with T1D. First my sister, she was 5, and 2 months later I was diagnosed at age 7.. I can't even imagine what it must have been like for my parents.. it's been a crazy 16yrs so far. But I'm thankful to be sharing this with my sister, it's actually a blessing to be diabetics together...