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Monday, July 18, 2011

Ally's Type 1 Diagnosis Story

Today’s guest blogger is my friend and awesome D Mama Misty from Life is Like a Box of Chocolates.
Misty is one of the sweetest people you’ll ever meet, and she has an adorable daughter Ally, who has type 1 diabetes. Misty writes a terrific blog. Head on over to Life is Like a Box of Chocolates and check it out!
Below you’ll find Ally’s diagnosis story. In my humble opinion, it’s a poignant post with an important message, and I am honored to present it here. 
Thank you, Misty!

First of all, let me say that I am a HUGE fan of D-Tales blog.  Heidi was one of the first D Mamas I met in the DOC and she was so generous in sharing many of her “Back to School with Diabetes” organizational tips and cheat sheets with me.  I continue to follow D-Tales because I can relate to Heidi and her stories about raising a child with Type 1 Diabetes.  It is a privilege to be sharing a bit of our D-Tale with you today.
Ally was diagnosed with Type 1 Diabetes in February of 2009.  I began blogging a little over a year later, in March of 2010.  Many of my favorite blogs, written by fellow D Mamas, included their “diagnosis story.”  I sat down back in March of 2010 with the intentions of writing our diagnosis story.  But I couldn’t.  It was still too raw for me.  I tried again this year as we approached Ally’s two year diaversary.  Still couldn’t do it.
But since then something has changed.
Ally and I met some new friends this week.  We met a mother and daughter who live a somewhat parallel life to us.  My new friend’s daughter was diagnosed with Type 1 Diabetes one year ago.  As she and I were talking about each of our diagnosis stories, I got a sort of chill down my spine.
I still have not written Ally’s diagnosis story, but there is a part that I feel needs to be shared.  Just before Ally’s diagnosis I had noticed some changes in Ally.  I now realize that they were classic Warning Signs of Type 1 Diabetes. 

Ally was extremely thirsty.  Ally was urinating all the time.  She became tired, very tired.  She did not have enough energy to speak above a whisper.  She could not hold her head up off of the arm of the couch, and eventually fell to the ground when she tried to stand because she did not have enough energy to hold her body up.  I noticed that she seemed to have a funny smelling breath and I kept asking her if she had remembered to brush her teeth.  Her kindergarten teacher expressed concern that she was having trouble reading (even though she was reading chapter books upon entering kindergarten!) and that possibly we should have her eyes checked.  A few of these symptoms happened over a couple of weeks, but for the most part they all came to a head in one weekend.  
Now, the reason that I feel compelled to share this part of our diagnosis story is because of the response that I got when I called the pediatrician’s office early on the morning of February 10, 2009.  I asked to speak to a nurse because I was so concerned about Ally and was debating whether to just drive her to the ER.  I described ALL of the above symptoms to this nurse and she told me that I should bring Ally in to see the doctor and she could get me in at noon.  I said that wasn’t soon enough, I AM DEBATING TAKING HER TO THE HOSPITAL…SOMETHING IS NOT RIGHT!  She told me to calm down.  She told me to give her some juice.  Let me repeat….give her some juice!  And bring her in at noon. 
I put Ally in the car immediately and drove to the pediatrician’s office (it is about 5 minutes from our house).  I said that I needed one of the doctors to see her immediately.  They did take me in.  And a few short minutes later, we were on our way to Children’s Hospital ER with a “99% sure” diagnosis of type 1 diabetes.  Since that day, I have replayed the conversation with the nurse over and over again.  I am shocked that she did not even have a suspicion that it could have been diabetes.  I am shocked.
And then when talking with my new friend about her daughter’s diagnosis, I heard a similar version of that conversation with our nurse.  She had taken her daughter to the doctor because she thought she had a UTI.  They took a urine sample.  They told her that she did not have a UTI, but she did appear to have all the symptoms of one, so they treated her for that.  Six days later this very persistent Mama went back and demanded another urine sample and blood work…the idea of type 1 diabetes had somehow (miraculously!) popped into her head one night while she laid awake worrying about her little girl.  This time the nurse told her that they had been meaning to call her because her daughter was spilling sugar into her urine…uh, this was 6 days later, folks!!
I am so concerned about the lack of awareness about Type 1 Diabetes.  And I’m not talking about what we go through on a day-to-day basis (that’s a D-tale for another day!).  I’m talking about the warning signs.  Yes, the signs can come on quickly and they also can look like many other illnesses.  But speaking for myself, as a parent and as a teacher of young children, I did not know about these warning signs.  And obviously, hearing of just these two accounts, we have more than one member of the medical field who also does not recognize these warning signs and symptoms.
Something needs to be done.  Warning Signs of Type 1 Diabetes need to be taught (or re-taught) to all those in the medical field, shared within schools, posted for parents.  Something needs to be done.  And if not us, then who?


Misty said...

Thank you for having me today Heidi!

Alexis Nicole said...

Great post. But you could've told me id need tissues!

Those symptoms. I see them in my mind so vividly now. J went into DKA in less than 36 hours. And he honestly didn't present symptoms till 48 hours before dx!

They said the airplane ride and jet lag pushed him into overdrive. Mind you his A1C was 13 and we had a well visit a few weeks before.

I wish I had know like you said. 48 hours could've meant life and death. I am grateful the ER nurse knew right away.

Ok sorry for the long winded comments, its still very emotional for me.

Love both you ladies!

Denise aka 'Mom of Bean' said...

It chills me to the bone to think of what might have happened as a result of the ignorance of those nurses!
I know there are lots of things that have the same symptoms, but in that case they need to consider ALL of them in order to potentially save a life!

Holly said...

Ahhh..Misty you are right. I see people who still ask me the signs all the time. (I think they are watching their own kids!) It's totally our responsibility. Thanks for sharing that day-I know it's no picnic-the remembering is awful. : (
Heidi-hope you are having a fun blogcation! : ) Hugs to both of you!

Amy said...

Misty!!! Thank goodness you stuck to your Mommy guns and took Ali in. I shudder to think about what might have happened if you didn't.

And, the Dr.'s office not calling about spilling sugar into urine . . . 6 days later after she called them?! Unacceptable.

I take it for granted that the medical profession knows T1D signs and woudl catch the syptoms listed as such. ARGH. We are too advanced for this to still be happening.

Thank you for sharing your story . . . it may just save a life!

Lora said...

Some of these dx stories just break my heart. I KNOW we got off lucky... it could have been so much worse.

Un-Apologetic Diabetic said...

So scary to think they told you to give her juice!!!

I didn't know the warning signs, and it took me a while to drag my behind into the doc's office. I thought the same thing, that it was a UTI or something. What a shock the diagnosis was. Wish people had been more aware of the signs of D, I had pretty much every single symptom!

Excellent post, so glad your mother instincts won and you got her in right away that day.

lukesdday said...

We had a very similar experience - nearly lost our little guy to DKA. Always hard to read about the same. ADA does some good education, and I know JDRF is planning a national effort this fall to educate the medical community, esp. in ERs. Too many kids go in in full DKA. Those are good places to plug in and help guide efforts around educating people, and I'm sure there are other outlets as well.