Pediatric Endocrinologist first visit

We live in a fairly small town.  It’s not tiny, but having grown up in San Diego…it feels itsy bitsy sometimes.  For example, we don’t have a single escalator in our town.  There’s only one movie theater, no malls, and one high school.  There are 36 blocks to the length of our main street.  Short blocks, not like big city blocks.  So apparently, we don’t attract and support the need for a local pediatric endocrinologist.  Even if you add in all the t1D kids from our neighboring towns…still not enough.

Our three options for pediatric endos all involved at least a 3 hour drive…plus an hour to account for traffic, parking, and making sure we are on time for appointments.  We chose the one that had a mall next to it (and an incredible reputation for medical care).  We were released from the hospital on Tuesday March 31st and had our first endo appointment Friday April 3rd.

We kept a log of what we fed Anna, what her blood sugars were, and how much insulin she received.  We had been told to give her 1 unit of insulin to every 20 grams of carbs.  We also had been told a correction factor where 1 unit of insulin should reduce her blood sugar by 100 mg/dL.  Her target blood sugar was set to 120 mg/dL.  We’d also been told to check her at least once in the middle of the night.

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We followed all the rules and as you can see above…getting into target range was very difficult.  I didn’t understand why we weren’t getting consistent results or reaching target blood sugars.  I didn’t know at the time just how much number-crunching new diabetes takes to dial in dosing.  And just how many puzzle pieces we were still missing.

We went to our first endo appointment armed with our log, a list of questions, and an ice chest full of carb-counted baggies of food since we’d be gone all day.  That first trip out of the house as a new t1d family was quite an adventure.  Much like traveling with a newborn for the first time. The packing list was not left to chance, it got written down on a sheet of paper and carefully double-checked before leaving the garage.  The oh-shit scenarios that we planned for were double what we usually plan…basically we packed as if we needed to outlast the Donner party.

At the appointment, we were greeted by many nice people.  A head endo, a fellow endo, a certified diabetes educator, a dietician, a social worker, and a trialNet coordinator.  Whew…we met a lot of people that day.  All very nice and patient.

They took a look at all our records from the previous few days of blood sugars and meals.  Like a magician, they came up with a new carb ratio 1:15 and a new correction factor 1 unit drops 50 mg/dL.  They also upped her daily lantus to 11 units from 8 units.  They kept the same target blood sugar range of 100-120 mg/dL.

insulin dosing sheet

We asked a bunch of questions like “if this happens, what should we do or expect…”  Frustratingly, it seemed like almost every answer was given with a big fat asterisk of “it depends on the person, you’ll learn.”  I really thought that they’d hand me a big flow chart with those little “yes” and “no” arrows pointing to the next decision or action item.  Apparently, that does not exist for type 1 diabetes.  I’ve tried several times to sketch it out and still can’t fit it all in a page.

Worse, they said a bunch of new variables that I hadn’t considered.  Stress, emotions, weather, hormones, illness, medications, food, travel, sleep…a seemingly unending list of things that could affect her blood sugars and how they behave at any given time.  How would it be possible to know how to dose insulin correctly with all of these factors going on?

We were a nervous wreck.  The assurance I really wanted was to find out how we could keep her safe.  How to keep her from going low, passing out and having seizure.  As a parent without any diabetes experience, I imagined it as some very quick process that she’d be fine one second and then suddenly shake and drop to the floor.  I felt like Anna was a ticking time bomb about to GO LOW at any random moment.  We asked them about that.  “How fast does low blood sugar happen?  Will we have notice?  Enough to do something about it?”  Unfortunately, they still hedged their answers with “it depends” and we were left feeling quite vulnerable and fearful.

At the end of the appointment, we asked them for any apps that they felt were helpful.  They mentioned the Figwee app (5 out of 5 stars for that recommendation!).  We’d also been using the MySugr app already to help us record what was on her paper log.

Oddly, the endo did not mention a continuous glucose monitor (CGM) during our appointment.  So I asked about this nifty device I’d seen on instagram (I’d taken to searching instagram for the #t1d hashtag to see if there was any useful t1d info).  @SugarStalking had posted a photo of a watch she was wearing and the caption said “Thanks to technology for letting me watch my son play soccer and knowing he’s safe #t1d #dexcom #cgm #nightscout”.  The watch face showed a blood sugar measurement.  I knew I had to have the same system, as soon as possible.

cgm

The endo said something like “oh, dexcom.  Yes, if you’re interested in that…sure we can write a prescription for it.  I think getting it set-up takes a little bit of coding familiarity, but if you want to do it…sure.”  [Little did I know that that would be the most important part of our visit that day.  They started the paperwork for a CGM that day and we had it by April 29th.]

We had a surprise for Anna at the end of the day.  Her best friend that had moved away, that she missed terribly, had secretly driven with her mom to meet-up with us.  As we got up to leave the appointment, we said to Anna “There’s one last thing we haven’t told you.  We have a surprise.”  At which point she immediately started crying big tears and said “I don’t want any more surprises.  They’ve all been terrible this week.  Please, no more surprises.”

Opps, parent fail.  We recovered quickly and reassured her this was a good surprise.  That Maddie was coming for a visit.  Right then.  We were meeting them in 10 minutes, having dinner together and walking the kids’ favorite stores at the mall.  It was the first time we’d seen true happiness in her since diagnosis.  I’ll never be able to repay the kindness of Jill and Maddie for agreeing to drive hours to meet us.  To give Anna that human touch, BFF comfort.

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So the short summary of the appointment:

Disappointment that the t1d how-to answers weren’t more definitive, easy to understand.  No t1d cliff-notes?

Mystery how they were adjusting the doses.

Wondering why it’s not standard-of-care to suggest CGM?

Grateful for their time and attention.

Hospital Education

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The first thing the nurses did was take a blood sample from Anna to test her for diabetic ketoacidosis (DKA).  As they explained it to us at the time, “If she has high enough blood sugars and ketones present, her blood could become acidic and low pH.  If she’s in DKA, she will need a slow infusion of insulin through an IV.  If she’s not in DKA, we can just do a shot of insulin.”  Anna and I looked at each other…neither sounded like good options, but clearly they thought the shot sounded just fantastic.

And then they asked Anna for a urine sample.  Poor girl, her Spring Break just kept getting worse.  She could not believe they wanted her to pee into a pan, save it, and just leave it there in the bathroom.  She was horrified at the thought that someone’s job involved handling pee.  She felt awfully guilty for the trouble she was causing for the nurses.

ketone check

About 30 minutes later, the Doctor came back to tell us she wasn’t in DKA and Anna got her first shot of insulin.  The doctor then proceeded to ask about our family history, whether she’d been sick recently, and a bunch of info about all the prescriptions she was calling in for us to pick up at the pharmacy before we got discharged.

That first batch of prescriptions is no joke.  Blood test strips, ketone test strips, glucagon emergency shots, alcohol wipes, syringes, rapid insulin, long-action insulin, medical waste container, lancets, and blood glucose meter.  I felt like I’d just been punked…this couldn’t all be necessary.  Could it?

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In the hospital, it got old really quickly.  Not much rest, not much insight on the details of diabetes management.  We had a dietician, social worker, doctor, nurse all come in and say basically the exact same thing that the other one before had said.  “Count your carbs, give insulin.”  I asked a lot of questions about the details beyond COUNT YOUR CARBS, but the answers were vague and weren’t given with a whole lot of confidence behind them.  Do we have to limit the carbs in a meal?  No, not necessarily.  How many carbs per meal should we aim for? Umm, 80 grams or whatever you feel comfortable with.  What will exercise do to her?  It depends.  Depends on what?  Lots of things.  How often should we be testing her blood sugar?  Before meals, before bedtime, and any other time that seems like you might need it.

Anna learned how to prepare her own insulin doses, and I learned how to do the injections.  Unfortunately for Anna, she also had her braces tightened the same day she was diagnosed (not a good day at all)…so it took awhile before the hospital food services could deliver food that was soft enough for her to eat.  Oddly, the meal was delivered with a note on it that gave the carbs in “exchanges” vs. “grams”.  We weren’t taught exchanges, didn’t know how to dose those, and had to google the carb count of the food while in the hospital for diabetes.  Seems strange, right?  You’d think hospital food services would be up-to-date on the latest techniques in carb counting.

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I grew frustrated fast.  It was an unsophisticated education complete with a Pink Panther “welcome to type 1 diabetes” book that was supposed to really make me reassured?  We were given a carb ratio (1:20), lantus dose (8 units daily), and given an appointment at the nearest pediatric endocrinologist (4 hours away at Stanford Diabetes Clinic) in two days to finish our education.  I decided that while the hospital staff was kind and caring, my real diabetes education was likely going to have to wait until Stanford.

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We only spent 22 hours in the hospital.  You couldn’t get me out fast enough.    Anna wanted the comfort of home and her own bed.  I was eager for the answers.  I’m an engineer…I needed more certainty and clarity.

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For the record, if you’re reading this while sitting in the hospital while your loved one is being treated for new onset type 1 diabetes, here’s what I recommend you check into.

  1. Choose a pediatric endocrinologist that believes in early continuous glucose monitoring (CGM) and insulin pump use.  Some endos prefer to have kids wait for a year before allowing them on an insulin pump.  This is straight-up bull sh!#.  If your insurance company has a 6-month waiting period, I suppose that might be a consideration…but don’t wait beyond that.  Having an insulin pump and CGM made all the difference for us adjusting back to an active, normal life again.  Even if you choose to stay on injections, having a pump on a shelf ready-to-go when you are ready is smart planning.  I’d have been furious if we were arbitrarily told we had to wait a year for a pump.
  2. Consider asking your hospital doctor or endo to prescribe insulin pens vs. vials of insulin.  Insulin pen needles (vs syringes) are much smaller and less intimidating for kids.  We also enjoy the portability of pens, they fit easily into purses and are less “obvious” than syringes if you want to avoid public stares when you have to bolus.  If possible, depending on your diabetic’s needs, ask for half-unit pens if they are very insulin sensitive.
  3. Buy the book Think Like a Pancreas as soon as you can.  You’ll be better educated, feel empowered, and have a good reference when the numbers aren’t what you’d expect.  It will help you understand what your endo is doing when he/she makes insulin adjustments and why.
  4. Breathe.  As often as you can, nice deep breaths.  This will be ok.

 

 

Diagnosis

 

Our first experience with T1D diagnosis was much like other families.  We didn’t have diabetes in our family.  We knew nothing about it, except our uneducated impressions that there was a type that affected kids and a type that seemed related to lifestyle choices.  We knew insulin was involved, and that the kids’ version involved shots.  Pretty sophisticated knowledge, right?

I guess it wasn’t surprising then that we missed the whole list of typical symptoms; increased thirst, frequent urination, weight loss, increased appetite, and mood swings.  Instead we used words like growth spurt, exercise, hormones, and impending teenage angst.

For several months before diagnosis, Anna was losing weight despite eating A LOT.  Like two western bacon cheeseburgers at a time, no problem.  I waved it off.  “Lucky kid, she’s going through a growth spurt and getting skinny.  Fast metabolism.”  Until the skinny got dramatic.  I remember watching a documentary on the holocaust and finding an eerie similarity to just how skinny Anna was becoming.

And the thirst…always drinking water.  She carried a water bottle everywhere.  When we changed her bedsheets, there were no less than 6 empty water bottles tucked under the pillows and stuffed animals near her head.  On any long road trips, she’d pack a bunch of water…and still finish them all before we’d reach our destination.

And the peeing…always needing to stop to pee.  This one I really was quite oblivious to.  I sleep fairly deeply, so I didn’t hear it at night.  But, my husband says he’d hear her getting up two or three times every night to go pee.  And then she’d down a glass of water on her way back to bed.  We both remember thinking if she were smart, she’d just stop the drinking so that she wouldn’t need to pee as much.  A real ah-ha moment for me was when we took a five hour car ride and we had to stop six times for Anna to use the bathroom.  That suddenly got me thinking something wasn’t normal.

And the moods…she wasn’t very happy.  She was moody.  She was kind of blah about life.  We just thought it was that teenage moodiness that everyone had warned us about.  She was 12 years old and we figured it was about that time to start the teenage power struggles.  She also had a dear friend move far away…we thought that had a lot to do with her depressed attitude at the time.

teen faceThe usual look we saw during the months before diagnosis.

In October 2014, Anna’s pediatrician sent us a note reminding us that it was time for their annual check-up.  I remember Jason asking me if we should go.  The kids (we also have another daughter named Holly, two years younger than Anna) seemed healthy to me.  Jason had some concerns about the emerging symptoms Anna was showing.  We decided to blow it off since no vaccinations were due at that time and it’s always so difficult to pull them out of school.

By March 2015, Jason couldn’t sit comfortably with the changes we’d seen now.  She’d lost even more weight and the thirst/pee thing was getting ridiculous.  So, he scheduled an appointment for the first day of Spring Break.  He took the kids in, while I was relaxing at a yoga class.

As a rule, nobody ever interrupts a yoga class.  So when the front desk walked in and called my name…I knew something was really not ok and that it had to be related to the pediatrician appointment going on at the same time.  I rolled up my mat, took a deep breath, and called Jason.

He remained so calm while telling me “Anna has diabetes.  They told us to go to the hospital right away and to expect to stay there for three days.  I’m on my way there right now.”  I don’t know how he did it.  Anna was in the car.  Holly was in the car.  He had to keep it together so they didn’t freak out.  Stud.

I got to my car and headed over to the ER where they were expecting me.

type 1 diagnosis day Photo from the first few minutes Anna was at the hospital.  Skinny?  Oh so skinny. Behind that smile was a whole lot of nerves.  What was going on?  Why hadn’t we explained anything?

Type 1 diabetes

anna

Just like Type 1 diabetes has a first day, this blog has its first day.

My name is Katie and my daughter Anna was diagnosed with Type 1 diabetes on March 30, 2015.  As this first year passed, I learned a lot.  Enough that I thought it was best to start a blog just in case these stories might help others.

If nothing else, this will be an opportunity to teach Anna about blogging, websites, photo editing, writing, and all those other important skills that she might want to access for the future college applications.