15 Years later and its still happening

On my Facebook news feed, there has been a lot of mention of a child who was recently diagnosed with Type 1 diabetes.  Too many children are diagnosed each day but this story is getting greater attention because she was not diagnosed until she was in a coma and now appears to have brain damage.

I can’t give you the details of this particular story.  I haven’t followed it.  I see the photos.  My heart breaks for the family and the young girl but I can’t sit down and read about them.  I can’t follow their story.  It cuts me to the core because I know that there but for the grace of God go I.

It was almost 15 years ago when my then two-year-old son was behaving strangely. He was clingy and tired. He was constantly soaking his diapers but he also was constantly drinking when he was awake.  We couldn’t keep him away from fluids. If we restricted what he drank to try to save his diapers, he marched his little body to the fridge and would guzzle apple juice from the carton.

We had taken him to the emergency room.  He had the flu we were told.  We waited for him to get better but he didn’t.  We made an appointment with our family doctor and our world came crashing down in waves.  Our doctor thought he had diabetes. He had ketoacidosis.  He needed x-rays.  He had to go to another hospital.  This was very serious.

I understood x-rays, hospital and serious.  My son was laboring to breathe in my arms and his body was cold.  It was serious but it couldn’t be that serious could it? He had been healthy all of his short life.

A trip to another hospital led to another wave of terror.  Now we were told new things. We heard diabetes again. We heard brain damage, heart attack, stroke, kidney damage, and “if he makes it through the next 24 hours.”

That was almost 15 years ago.  Someone missed checking his urine or blood during the first visit to the emergency room.  It almost cost my son his life.

Today we have insulin pumps. rapid insulin, continuous glucose monitors, and sensor augmented pumps.  We have meters that read bg levels in under five seconds but still we have children literally dying because a diagnosis of diabetes was missed.  A routine test of urine for sugar or ketones is not done when they are checking for everything else.  Doctors assume that its flu season and the child must just have a bug.

Its not their fault.  We feel that it is when its our child but they have to know so much and what ails the human body can be such guess work.  They could help themselves and our children however if they remember to add that one little screen to routine blood or urine work-ups.  A stick in urine will still show the presence of ketones.  Asking any parent of a child with diabetes how long it takes.  Its a matter of seconds and the urine sticks are cheap. ketostix_intensity

In 15 years a lot has changed.  Our meters no longer take 30-60 seconds to produce a reading.  There are other background insulin options besides NPH.  Insulin pumps are now so smart that they can talk to continuous glucose monitors.  Continuous Glucose monitors are no longer items that are blinded and reserved for only select hospitals.

Type 1 diabetes is finding itself in the mainstream media.  Insulin pumps are being shown and discussed in various television shows.

Despite all of these strides ahead, children are still dying.  People do not know what to look for.  As a parent, I didn’t know what diabetes looked like or even that I should be looking until the signs were literally posted right in front of me.

Healthy children get sick but they don’t need to die.  We need to work harder to get the word out there.  Families should not suffer this pain. No one should die or suffer the damage of undiagnosed type 1 diabetes in 2015.


6 thoughts on “15 Years later and its still happening”

  1. Your words couldn’t be more true. When my son (11, dx almost 2 years ago) has to visit the ER, which as a parent of a T1D you know this happens eventually when they get sick, it’s always the same. Many, not all, nurses in the Ped ER just don’t know about T1D. And, when he’s actually admitted overnight, our Endo tells me that I will know more about my son’s care on the Ped/adolescent floor than the nurses. How scary is that? And, this is at a well-know trauma center in the northeast. It’s seems unreal how doctors and nurses aren’t equipped with the knowledge of these childhood diseases/conditions…especially if they “specialize” in children’s medicine. Since my son’s DX, I also check my other son for ketones and occasionally do a finger stick. Before dx, our pediatrician never did that, except maybe once a year did a urine test, and only for a well-care visit. Why shouldn’t it be protocol to do a urine stick dip every time a child comes in sick? Things need to change before more tragedy strikes. Thank you for your post!

  2. My dd was diagnosed 19 years ago–FINALLY after 8-9 months of me practically begging the pediatrician. My heart aches with every story. I’ve spent the last two weeks creating the Test One Drop awareness campaign. Please check it out, join my Facebook page, and share, share, share! Together we CAN make a difference!!! Alsp, do you care if I share this blog on my Test One Drop Facebook page? Please inbox me. I went live with this website last night– http://www.testonedrop.org Pleas help me spread the word! Thank you for writing an article to bring awareness!!! It can also be found on Instagram, Pinterest, and Twitter. See testonedrop.org for links and a flyer/poster designed to bring awareness to this particular issues.

  3. There are sticks that test glucose in urine not ketones. That’s what people used to use before we had bg monitors. You can get sticks that test ketones + urine glucose, too. I guess ER doctors do not do that test because so few kids are t1d when they come into the ER. It is scary that nurses do not impart their knowledge to patients. I’m a teacher by training and a librarian. In the school system, you’re supposed to teach kids to think and to learn how to express their thoughts in an articulate manner. I’m shocked by how little healthcare workers are allowed to say to their patients. If they say anything about a patient’s medical conditon, they can be fired on the spot and there will be no reprieve. They can tell you a test result and that’s it. No interpretation. Therefore, a lot of nurses and other medical personnel may know a lot but their lips are sealed. They might be able to push you in the right direction, but it would cost them their job, if they are not your doctor. I think that has to change. So many doctors, as the poster above, has noted know nothing about t1d and how to manage it. The patient or the patient’s caregiver will know a lot more. Therefore, the doctor or the residents should be told that the hospital policy is that the patient or the patient’s caregiver manages his t1d unless events demand further action from the hospital staff or the patient or the caregiver prove his or herself unable to manage the t1d in the present circumstances.

  4. We learned that another tell tale sign is how bad the child’s urine smells! We couldn’t figure out why my 5 yr old granddaughter’s urine smelled so bad and why she was wetting her pants and always so thirsty. She goes for her annual physical exams and everything is always good. It wasn’t until my daughter looked up on the Internet the symptoms and found several blogs where mothers said she should be checked for diabetes.
    I just felt compelled to mention don’t forget about the smell of the urine.

  5. The nurses and doctors including internal medicine doctors at the hospital have no clue about type 1 or insulin pumps. I have been type 1 for 21 years now last year when I was pregnant with my second child. I had to be admitted in my 8th month because my bs went sky high. I knew it was because the baby was growing so much, I also knew the formula for figuring out the increase for my insulin pump settings from my dr. The hospital that I was to deliver at did not have an endocrinology dr and the nurses, obviously and internal med dr were all looking at my pump like they were seeing fire for the fir add t time. The internal med dr somehow came up with a calculation that I needed to increase every setting by 3 units. I refused giving my reasons why had to tell them to keep me on a drip until my endo dr called back. Low and behold she was dead wrong and I was 100 right. Her calculation of adding 3 extra units would have made my bs drop to low and I would have lost my daughter.

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