November 3, 2011

Educate and Re-educate!

With this being Diabetes Awareness Month, I feel most compelled to spread awareness of the symptoms of Type 1 Diabetes.  So, I'd like to share a guest post which I wrote back in July for my friend Heidi over at D-Tales.  I apologize if you have read it before, however, these stories can't be shared enough.  They could save a life.

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 had noticed that she seemed to have a funny smelling breath and I kept asking her if she remembered to brush her teeth. Her kindergarten teacher had 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 or not 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. I’m not talking about what we go through on a day to day basis.  Nor am I talking about the lack of knowledge out there about the difference in type 1 and type 2 diabetes (that’s a story 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, 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.

(Side note:  Since originally writing this post, I have met yet another friend whose young daughter's diagnosis was almost missed because they sent her back home telling her it was probably a UTI.)

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?

Diabetes Fact #1: Type 1 Diabetes is an autoimmune disease in which the body's immune system attacks and destroys the insulin producing cells in the pancreas.

Diabetes Fact #2: No one knows exactly what causes type 1 diabetes. However, it IS known that it is NOT caused by poor diet or lack of exercise. Scientists believe that both genetic and environmental factors are involved.

Diabetes Fact #3: Type 1 diabetes, sometimes referred to as Juvenile Diabetes, can strike at ANY age. And whenever it hits you, it's forever. Until a cure.


  1. Exactly! How can we educate the general populations when the nurses and doctors are misinformed too? It isn't right!

  2. Yes I am hearing so many stories that their young daughters had an UTI just has they told us...the warnings signs were on cue to T1 and how the doctors missed it is beyond me. Educate Educate Educate!!!!!!!!

  3. Glad you posted and awareness is key! I have a co-worker whose son was diagnosed too late...they were told it was something else and sent away only to end up back a few days later and then rushed to the PICU, but not in enough time. The symptoms can be easily mistaken for other diagnoses but I think people (including health care professionals) need to be more aware and not dismiss the possibility so quickly...a quick finger stick and urine test can tell us so much so quickly and can save lives!

  4. exactly!!! similar story here. the GP saw Reuben at least every fornight for 3months leading up to diagnosis, and on the Tuesday before he was diagnosed on the sunday, he gave us thrush drops and antibiotics (all of which Reuben kept vomitting). I felt he didnt take me seriously enough, I remember saying he screams all night like hes got broken bones or something.... oh its so painful to revisit.

  5. These comments are sad. I went undiagnosed for a long time as well. It has lead to several permanent complications. When I was younger, I was so thirsty I would drink from the ditch when we were out playing in the field next to our house. The doctor kept saying it was hormones. Sadly, it wasn't....

    Thanks for posting this!


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