D-Mom: Joanne of Death of a Pancreas

by Leighann on February 8, 2010

D-Mom Blog Featured D-Mom

As I was searching for blogs written by parents of diabetic children, I found Joanne. Her daughter is much younger than mine and it’s got to be difficult to get a diagnosis of diabetes when your child is not yet verbal.

I invite you to read about Joanne and her daughter Elise and then visit her blog Death of a Pancreas.

I’d like to introduce you to Joanne of Death of a Pancreas.

Tell me something about your child.

I don’t think I have the right words to describe what an amazing child Elise is. She has a delightful, quirky personality, and has never met a stranger. She might be a bit shy at first, but give her 5 minutes and you’ll be best friends.

She said her first word at 7 months and never looked back. My days with Elise are filled with non-stop chatter, and I love it!

Elise

Joanne's daughter Elise

How old was your child when diagnosed?

She was diagnosed at 12 months, just two days after she turned one.

How was your child diagnosed?

She was diagnosed by a complete fluke.

We knew something was wrong with her, we just didn’t know what. When we took her to her 12-month Well Child visit, we discovered she had not gained any weight during the time between her 9 and 12 month appointments. Elise had a UTI a few months prior, and her pediatrician wanted to do a urine test to make sure it was clear. To everyone’s surprise, they found sugar. They did a repeat test, and it was still positive for sugar. We then had an A1C done, and when the results came back at 6.5, they had us admitted to the hospital.

How has your child’s life changed since diagnosis?

Elise has not known anything different. She has now had diabetes longer than not. For her it’s normal to get her fingers and toes poked, to get shots at least three times a day, and not be able to eat what she wants, when she wants.

How has your family’s life changed since diagnosis?

The diagnosis has definitely brought us closer, and it has really opened my eyes to what an amazing man I married. It has also made us more aware of what is important and what is not, and not to get so caught up in the little things. It has made a lot of things a lot harder–holidays, schedules, nap times meals, travel–but we are learning what works for us.

How has connecting online helped you cope with diabetes? What online resources do you use?

Right after the diagnosis, I used message boards, but it was too time consuming to keep up with all the posts.

I’ve always used writing as a type of therapy, so I started a blog, never thinking anyone in their right mind would want to read it.

Now, over a year later, I have met some of the most wonderful women (and men too)! Their support has gotten me through some very rough times, and I love that we all come from different walks of life. We laugh together, cry together, cheer each other on and help each other cope.  There are none better…

How do you manage diabetes?

We do multiple daily injections (MDI), carb counting (using carb factors), and checking her BG.

What would you tell parents of a newly diagnosed child?

It WILL get better. It will. It may not be for awhile, but there is light at the end of this very dark tunnel.

Life with D is like riding a roller coaster that you can’t get off. There are ups. There are downs. Sometimes you feel like everything is spinning out of control and you are scared. Other times you feel like you’re going to throw up from the pressure of it all. Then you’ll feel like you have everything under control and you’re on top of the world. Until you plunge down that hill and start all over again.

What do you know now that you wish you had known at diagnosis?

I wish I had taken the time to read up on carb factors. Because Elise is so little, EVERY carb makes a difference. Even 5g can affect her BG by 100. So we are very strict about weighing everything she eats.

Someone had told me about carb factors when she was first diagnosed, but I was too overwhelmed to read about it. About 6 months after the diagnosis, I decided to give it a whirl and it has made my life so much easier. I have a whole post dedicated to it on my blog.

Do you do any fundraising?

My husband and I formed Team Elise just two weeks after her diagnosis to walk in the annual JDRF Walk to Cure Diabetes. We’re also on the Family Team Committee (contacting families to get them involved with the walk), but my husband really does all the work on that one.

Meet other D-Moms and D-Dads each Monday.

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{ 8 comments… read them below or add one }

1 Lorraine February 8, 2010 at 11:33 am

Hi Joanne,

Nice to meet you!
Your point about carbs and their impact on young children really rings true to me. I think back often to the advice we received when Caleb was first diagnosed: treat a low with 15 carbs. Period. Treat with 15 carbs and check again in 15 minutes. I learned very quickly that 15 carbs for a low usually meant dealing with a high shortly thereafter. When they are young, the sensitivity is so great.
Thanks for sharing your story.

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2 Wendy February 8, 2010 at 2:11 pm

I love Joanne!!!! I’m a fan 🙂

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3 Joanne February 8, 2010 at 3:49 pm

@Lorraine – Nice to meet you too! Although I have stopped by your blog, just never made myself known… I need to add you to my list.

I too hate the “one size fits all” advice the CDEs gave us when Elise was first dx. Even to this day we don’t give 15g to fix a low. It depends on her number and we go from there. It’s all about figuring out what works for you, right?

@Wendy – Mwah! I love you too, sista!

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4 Cherise February 8, 2010 at 5:46 pm

Nice to meet you! You are doing a great job with your dtr! Kudos to D-moms and D-dads

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5 Mike LeBlanc February 8, 2010 at 6:49 pm

Yes, I agree, carb factors are very, very helpful. And it is so important to be as precise as possible in counting carbs when dealing with young T1’s since their Total Daily Insuline amount is so little compared to an adult.

Thanks for sharing and… Go Team Elise !

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6 Rachel February 9, 2010 at 7:18 am

Hi Joanne,

I’m glad to see that you are a featured mom! 🙂 You and I had talked a bit in the past and unfortunately, I had lost your blog! Now I have it back and I’m quite happy about that! 🙂

Keep up the great work. I can so relate when you say that Elise doesn’t know a life without diabetes… neither does Tristan.

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7 Jennifer February 9, 2010 at 12:32 pm

Hi Joanne! Loving all the other D moms (and dads) that I’m now finding… thanks Leighann!

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8 julie January 1, 2011 at 2:59 pm

Joanne, loved your blog and I will be including it in one of our January newsletters along with your link. julie

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