She’s 2, and She Has Diabetes

I had gestational diabetes during my first pregnancy, and I was a total wimp about it. I had to stick myself to check my blood five times a day, watch my food, and I was mad because I couldn’t eat ice cream. Then I had the baby and the diabetes was gone and I wish I could go back in time to my whiney self and tell her to stuff it.

A friend of mine found out a few months ago that her two year old has type I diabetes. Here is her story, as she told it to me. I’m sharing this because a) I don’t think many people are aware that diabetes can happen this young and be this challenging – I certainly wasn’t, and b) this really humbled me. I find being a working mother so so so tiring sometimes, but good lord, I’m not having to do this:

 F (not her real name) was diagnosed with diabetes in October.  She was very thirsty and peeing a lot, so I suspected diabetes and unfortunately, much to the surprise of the medical staff who I’m sure thought I was paranoid for bringing my otherwise healthy looking 2 year old in, I was correct.
Thankfully we caught it before she was in diabetic ketoacidosis, which
is when most kids are diagnosed.  F had a 2 day stay on the regular
peds floor at UVA, which was much better than it could have been.

F was amazing from the time of diagnosis.  In
the ER (had to go here in order to be admitted…not so happy about
that), the nurse recruited another employee and planned to swaddle her
and pin her down in order to put in the IV, but we requested to try it
without holding her down, and F didn’t even flinch…just held out
her arm for the nurse.  I think she must have known she was sick and
being helped.  She’s never flinched for a finger stick or an injection.
She just holds out her finger when we say we have to check her sugar.
Once after an injection she said quietly “ouch, dat hurt” and when we
said how sorry we were that she has to go through all this, she said
“dat’s ok”.  Might be different if she really understood what an impact
this is going to have on her life!
Obviously, diabetes (type 1) is rare but actually one of the more common
childhood chronic diseases.  It’s an auto-immune disease with a genetic
component, although we have no history in our family.  She was
pre-disposed due to genetics and then something triggered her body to
attack the insulin-producing cells in her pancreas, so her body no
longer produces insulin.  Now we do finger sticks about 10+ times per
day, give insulin injections 5 times per day,
measure or weigh
everything she eats that contains carbohydrates (so we can figure out
how much insulin to give her).  She can still have birthday cake and
other treats, but we have to give her the right amount of insulin along
with it (so of course preschool is complicated because we’re not there
to give her insulin with her snack, so we have to be careful about what
she eats…the amount she can have determined by her blood glucose level
at the time, which her teacher has been wonderful about checking!)

Activity, mood, illness, food, and lots of other things affect how much
insulin she needs, and if her blood glucose level gets too low, it can
be very dangerous (passing out, seizures), which is why the more people
who know about this the better.  A blood glucose level that is too high
is also not so good (it’s uncomfortable…headache, thirst, etc, plus
the long term complications can be bad).

Husband and I are doing well, but very sleep deprived.  We’re still checking her a
couple times a night most nights, and the past week she has been high,
waking up very uncomfortable, screaming every couple hours.  She was
high a few minutes ago when we checked, so we just gave her some extra
insulin, but now we’ll have to check her throughout the night to be sure
it wasn’t too much.  The amount of insulin we give her is so low, it’s
difficult to even measure, but it has such as huge impact on her, as
does every gram of carbohydrate that she eats.  I think it will get a
little easier when she’s older because she’ll be able to communicate to
us when she feels low and she’ll be on higher doses of insulin (so we
can measure more accurately, hopefully), but it will not be a carefree
life!  

We are to the point now where, even though we don’t know
everything about diabetes of course (and we are far inferior to a
properly functioning pancreas), we are fairly confident in what we’re
doing and are able to accept that many of the surprising blood glucose
readings that we get are not related to us doing anything wrong…it’s
just the crazy way the body works.  One of the most difficult things
about all of this right now is that it’s difficult to leave F with
a babysitter.  On a positive note, I’ve cut back on my work hours, and
I’m enjoying the extra time with F.  Before October, I felt like I
was missing out on her toddlerhood…

Type 2 diabetes is much more common and is what most people think of when they think of
diabetes…poor nutrition and lifestyle often trigger this–not so with
type 1.  We’ve been warned that once F starts school, there are
going to be a lot of people who assume she got diabetes because of poor
nutrition and lifestyle since diabetes (type 2) is one of the most
common and costly healthcare expenses, and there’s a huge push to
educate kids on the causes and to scare them with the long-term
complications–unfortunately, there’s no differentiation between type 1
and type 2 in this education (the causes being very different, but the
long-term complications could be similar if either type 1 or 2 is not
managed well).  No matter how physically fit and how healthy F
eats, she will always be insulin dependent (unless a cure is found);
this is often not the case with type 2, so feel free to do F a
favor a spread the word!

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2 Responses to She’s 2, and She Has Diabetes

  1. Marijean says:

    I really appreciate this post. My mother is in her seventies and has had Type I diabetes most of her life. Sometimes called Juvenile Diabetes, the disease is fatal if untreated. She has taken exceptional care of herself and no doubt, it has never been easy. It’s true that not many people understand diabetes. I volunteered with the American Diabetes Association in St. Louis for many years and have supported efforts by JDRF as well. I would encourage F’s mom to find support in these organizations, and, if she’s in C’ville, to look to Camp Holiday Trails for some respite in years to come — also for an opportunity for F to feel “like a normal kid.”
    There’s no day off from diabetes. It’s manageable, but often makes those who have it feel deprived.
    Here’s another lesson I’ve learned from my mom and from my work with the ADA — they’re not “diabetics” they’re PEOPLE with diabetes. People don’t want to be defined by their disease. It’s important that we’re all aware!

  2. Elizabeth says:

    Wow, thanks for posting this. Her parents sound like they are doing a GREAT job and she is so fortunate to have them. The story really helps put my life into perspective…

    Elizabeth

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