Saturday, January 29, 2011

Gone too soon...

This week has been difficult. Hearing the news of not just one death due to T1 Diabetes, but SIX in the last couple of  weeks. FIVE of them THIS week.

There have been several deaths related to T1 Diabetes in the past several months. I could not bring myself to blog about them previously. But this time is different. SIX in just a short time. I am in shock.

This is hard.

You may have heard about them.

If you are on FB, blue candles are everywhere in honor and support of these lives lost too soon.

A 24 year old girl in Australia. Her parents were on vacation and she went into DKA, a coma, and then a week later passed away.

A 27 year old mother of two.

A 16 year old boy.

A 16 year old girl who passed away while napping.

A 9 year old girl who couldn't take the stress and depression of the disease any longer and took her own life.

And finally an 18 month old child. Here in AZ. This 18 month old died because of a misdiagnosis.

This last one has hit me the hardest. They are all sad in their own way. They all have their stories that break our hearts. But, this last one. This 18 month old who was misdiagnosed and died because he/she was not diagnosed with T1 Diabetes until it was TOO LATE.

This is NOT right. The Superhero was diagnosed at 18 months old. He was misdiagnosed throughout the week leading up to his T1 Diagnosis. Another few hours and WE would be in those parents' shoes.

ONE loss to undiagnosed T1 Diabetes is ONE TOO MANY. This should not be happening. These babies should be diagnosed correctly. EVERYONE NEEDS to be aware of the signs.

The week of The Superhero's diagnosis he started breathing "funny". This is one of the symptoms listed on the JDRF site.

Warning signs of type 1 diabetes (these may occur suddenly):
  • Extreme thirst
  • Frequent urination
  • Sudden vision changes
  • Sugar in urine
  • Fruity, sweet, or wine-like odor on breath
  • Increased appetite
  • Sudden weight loss
  • Drowsiness, lethargy
  • Heavy, labored breathing
  • Stupor, unconsciousness

Education about the symptoms of type 1 diabetes is critical because type 1 can easily be mistaken for more common illnesses, such as the flu.

And looking back now, The Superhero had MANY of these signs/symptoms. We just passed them off as something else.

Drinking a lot. It is HOT outside.

Peeing a lot. Drinking a lot makes you pee a lot.

Weight loss. Losing baby fat.

It was EASY to blame the symptoms on ANYTHING else.

This was NOT even on the ER docs' radar or our pediatrician's.

And for somewhat good reason, at the time anyway.

T1 Diabetes WAS not that common in kids this age.

Of course, now I hear of it more and more.

And OUR pediatrician has LEARNED from The Superhero's dx. She is now helping to teach the med students who come through her office about the signs. And she did tell me one time when we were there that they were testing the BG of a child in her office RIGHT THEN because of our experience.

WE are the lucky ones.

We got a diagnosis.

Not without pushing though. I had to ask the ER docs at the Children's hospital if they THOUGHT it could be Diabetes. I had googled until I was blue in the face. Diabetes was the one disease that kept coming back up after typing in the symptoms.

The kids who do not get diagnosed until it is too late just break my heart.

I know Diabetes is hard.

It is hard to hear my now 4 year old tell me that "Diabetes sucks". He is right! It does suck. There is no nice way to say it. It sucks. It hurts. It is exhausting. It is overwhelming. It is complicated. It is relentless.

A few more hours on that fateful day and WE would be another statistic. WE would be feeling EXACTLY what these parents must be going through. WE would not have OUR Superhero in our lives. Scares me to even think about the "What ifs".

BUT, the truth is...I would MUCH rather have to go through this...

Than to NOT have THIS smiling face in my life...

And I KNOW the parents of the misdiagnosed toddler would too. My prayers go out to them and to all of the families who have lost their battle with T1 Diabetes too soon. Even though I don't know any of them personally, they were FAMILY to me. We share a common bond that connects us as strangers.

PLEASE take the time to learn and SHARE the signs. YOU could end up saving a life.

*Disclaimer: I am a mom of a T1 Diabetic child. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*


Haley said...

I lost 30 pounds in one summer. we thought I was growing. I was eleven and we blamed everything on puberty. It is SO easy to blame those signs on anything else besides diabetes.
Its so serious, and scary.
great post Tracy

Reyna said...

Scary, serious, and "deadly". Unfortunately, many don't realize this disease is deadly if not diagnosed. They say that we are so "lucky" that we caught Joe's diabetes "early". I explain that another week or so, Joe would have been fighting for his cannot just live without insulin. You DIE.

Great post.

connie said...

My heart breaks for these families. My daughter was just 18 months old too when she was diagnosed, the only reason I knew she had T1 was because my other daughter had been living with T1 for almost a year and I was aware of the signs I needed to look for. Had we waited or not known what to look for she too could be gone, it kills me to even think those thoughts.

Misty said...

I am so sorry for all of these families that have lost loved ones this week. Tracy, I also keep coming back to this sweet baby that was misdiagnosed. It is haunting. Thank you for sharing the signs and symptoms.

Hallie said...

I know. This one kills me. Because had I not known the symptoms... had I not pressed for that bg test... It could have been us. I have chills as I type this.

I think that testing should be mandatory at well checks. Sweets diabetes would have caught a MONTH earlier if it had. BEFORE she was in DKA. Its as simple as a finger stick or peeing in a cup. And it could save lives...

Well said, Tracy.

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