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Monthly Archives: August 2011

Bittersweet

Yesterday morning I went in to wake KC up at 8:30. Now that she’s a middle-schooler, she wants to sleep in on the weekends…which was a primary factor in her decision to use an insulin pump. She’s been running a bit low in the mornings, so I wanted to make sure she checked her BG early. As I tried to wake her, she muttered “I’m not hungry, I just want to sleep some more.” My response was firm: “We need to check your blood sugar…now!”

KC rolled over….”I already checked it at 6 am…and I took 4 glucose tabs.”

She’s 11 years old. She’s been a T1DM for 8 months. She’s been on the pump for 3 months. She’s had a CGM for 2 months.

She has a lifetime of having to check herself and respond to her CGM. And she’s already taken charge.

I was torn….proud of her for taking care of herself but sad that she has to do so. Worried that she did this on her own, but knowing that she needs to be able to do so.

She’s my baby and she’s growing up. T1DM has just made it happen earlier.

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Back to School

I have always loved back to school time.  Love new school supplies, fall clothes, the excitement of a new year….maybe that’s one reason why I went into teaching (once upon a time, that is).

I love that KC is so excited to be going back.  She’s had her backpack filled, everything labeled, for more than two weeks.  #1 son doesn’t seem quite as eager, but  he will be heading to high school.  We haven’t even purchased his school supplies yet, but then again, high schools don’t give out supply lists.  I remember that I didn’t expect my high school students to have more than a pen and paper (and many didn’t even come with those rudimentary supplies) on the first day.  Some high school teachers can be very specific about what they want their students to use, while others have no preference.  So #1 son’s supplies will wait….

Sending children with diabetes or food allergies to school can be a daunting task.  We are so fortunate that KC will be entering her middle school years at the same school she has been attending for the past three.  She is also following her big brother, so there is a comfort factor in knowing the teachers and their expectations.  We also take comfort in the fact that one of the teachers on KC’s T1DM School management team last year, is her home room and history teacher this year.  But, we will have lost our sweet librarian, who had the added benefit of being an RN.  We wish her the best of luck, but will miss her more than she could know!

KC’s class is already familiar with her T1 but I wish I had known about this episode of ARTHUR when KC was diagnosed!

http://www.pbs.org/parents/arthur/promo/diabetes_initiative/di_qt.html

Our school will have not one, but two T1DM’s this fall.  Deeply saddened to see another family going through this, but glad that our hard work and planning last year will help another child.  “Firefly” (nicknamed because of the song “Fireflies” which she performed to at the school talent show two years ago) is two years younger than KC.  Such a sweet girl!  Our families are working together on mini emergency boxes for each classroom:  art, music, PE, computer lab, library, and Spanish.  The kits will contain juice boxes and glucose tabs/packets of sugar.  We will have treatment plans for dealing with highs and lows laminated and placed in each room.  In addition, we will have a carb chart on the wall of the cafeteria that will include the most common lunch menu items with serving size and carb count listed.

In her backpack, KC will carry a zippered pencil-case containing a smaller glucose meter, lancets, strips, sugar packets, and a mini sharps container.  We recycle strip containers and plastic gum containers (the ones that fit in cup holders) for on-the-go sharps containers.  So all in all, I’m feeling pretty good about sending KC back!

It turns out my bigger battle is the same one I’ve been dealing with for almost 14 years….#1 son’s milk allergy.  I really thought that high school would be easier.  Having taught high school,  I didn’t expect class parties.  Lo and behold, we learn that on the first day there will be a pizza party for the freshman.  Great….not!  The party is sponsored by the parents group.  I’m tired of being the parent who has to teach other parents and school administrations about being sensitive to food allergies (and now I get to teach them about T1…yay!)  For the past three years, #1 son was at a school that did everything they could to accommodate his allergy.  I couldn’t have asked for more from them. Our previous schools were not so helpful.  I’ve tried explaining that a reward party for  a class isn’t a reward for #1 son if he has to bring his own reward.  It isn’t rocket science, is it?

What am I going to do about this one?  Let it pass…..for now…..send #1 son with his own lunch (and Duncan Hines brownies to share with his friends) and then….wait…..

There will come a time when I’ve got the strength to fight that battle again.

Navigating the World of T1DM

Navigating the World of T1DM

On December 19, 2010 I considered myself to be a well-read, educated mother. Having been raised by parents in the medical field (doctor and nurse), I was not intimidated by doctors, hospitals etc. Throughout my life I have seen the miracles of modern medicine–from my mother’s successful survival of three completely unrelated cancers– to my husband’s kidney transplant due to a birth defect that destroyed his kidneys– to my own two miscarriages brought on by an autoimmune disorder and then subsequent pregnancies that gave me my two beautiful children. I never felt out of control…I never felt overwhelmed…

But on December 20, 2010, I met my match. Learning that KC had Type 1 diabetes shook me to my core. And even though I knew people with Type 1, including #1 son’s best friend, I discovered that I knew nothing.

Eight months later, I’ve learned so much, including the fact that there is more to learn. I remember going on-line, right after the diagnosis and seeing words I’d never heard of before….bolus, infusion set, T1DM, PWD, DOC etc. And I’ve been thinking that every day another mother (or father) is sitting at their computer looking at those words for the first time. And I hate that thought…the thought of how lost, confused, empty, alone, sad, angry, and frightened that person is feeling. I wish that no other parent had to go through this learning curve that I am on.

But I can help.

Maybe. Just a little.

By explaining what those foreign words and acronyms mean.

T1DM: Type 1 Diabetes Mellitus: an autoimmune disorder where the pancreas is attacked leaving the person insulin-dependent; also known as juvenile diabetes; this disease is not brought on by poor diet or lack of exercise

Type 2 diabetes: adult onset diabetes or non-insulin dependent diabetes; may be manged by diet and exercise

PWD: a person with diabetes

CWD: child with diabetes

DOC:  diabetic on-line community

MODY: maturity onset diabetes of the young; a monogenetic form of diabetes that is neither T1 or T2

MDI: manual daily injections of insulin; fast-acting insulin like Novalog is usually given at meal times and a long-acting insulin like Lantus is given as background insulin (similar function as the basal insulin for the insulin pump). 3 to 4 shots a day is pretty normal.

bolus: the amount of fast-acting insulin given with a meal; many doctors today use carb counting to determine the bolus with a ratio of 1 unit of insulin per a specified number of grams of carbohydrates

pre-bolus:  give the bolus amount 10 to 20 minutes before eating to help ward off post meal highs

basal rate: this is used with insulin pumps to provide background insulin throughout the day to help keep blood glucose levels steady (replaces the long-acting insulin, Lantus, used MDI)

BS or BG: blood sugar or blood glucose; the levels that are tested throughout the day by those with diabetes

lancets: the needles that prick the finger for blood glucose test

CGM: continuous glucose monitor; a small sensor that is attached to the PWD and is able to take glucose readings every five minutes. CGM’s use interstitial fluid in the body, not blood, to measure the glucose levels. These readings are approx. 20 behind a traditional finger stick reading.

infusion pump/insulin pump: a machine that is able to pump insulin into the PWD, eliminating MDI

cannula: small (teeny tiny) tube that is inserted into the PWD to deliver the insulin

infusion set:  the cannula/tubing etc. that connects the pump to the PWD

tethered pump: a pump which has long plastic tubing connecting the cannula to the pump (Medtronic Minimed Paradigm is one example)

untethered or non-tethered pump: pump attached directly to PWD without tubing (Omnipod is an un-tethered pump)

JDRF: Juvenile Diabetes Research Foundation; the leading advocacy group for those with T1

If you think of any more, please add them.

Mickey, Minnie, & a CWD

My biggest fear when planning for the trip to DisneyWorld was that KC would be running high. I figured that the heat, excitement, and lots of walking plus less control of meals would wreak havoc on her blood sugar. Well, the one thing that is consistent about the beast known as T1DM is that it will make a fool out of you time and time again!

KC ran normal with drops toward low every day. I can handle that…give her a juice box and we were good to go! She ate ice cream and french fries–absolute heaven for her!

Then came the nights….she wanted me to sleep with her, so #1 son got the sleeper sofa, J got his own bed, and we girls bunked together. The first night I was awakened by her CGM with a low prediction, checked her BG and she was within normal. Went back to sleep only to be awakened an hour later…rechecked BG, same story. This pattern continued for 4 hours until she finally dropped below 70. I gave her 4 sugar packets, plus the one that ended up all over the sheets…isn’t that comfy! And then she was normal until breakfast. Next night, CGM started alarming every 15 minutes. Took an hour to get her up to normal and then a peaceful night. The third night I gave her a glass of milk before bed with no bolus…and then, thankfully, no lows that night! You gotta do what you gotta do…