UPDATE: July 11, 2015: It is with deep sadness to say that Kycie Jai Terry has passed away. According to her facebook page she died at approximately 4:30 this morning. Kycie was diagnosed in January 2015, her blood sugar was over 1100, because of this her brain bled into her brain stem. She was making progress from her TBI when she got sick with pneumonia, she was flown again to Primary Children’s Hospital and after a few days was released to return home, seeming to be okay. RIP Kycie, you have made such an impact on so many in such a short time. Many lives have been saved by your story, and you have inspired so many! In the type 1 community we use the blue candle to symbolize a life lost by type 1 diabetes. Please keep the Terry family in your prayers as they start to heal from this tragedy and learn how to live without their beautiful daughter.
Parents of kids with type 1 diabetes are advocates for spreading the word about the symptoms. With so many kids ending up in the hospital in DKA at the onset of type 1 diabetes we want to empower parents, aunts, uncles, grandparents with the knowledge of the symptoms of type 1 diabetes.
We hear about the tragedies, they are what inspire us to act and spread the word of the symptoms and try to reach doctors offices to make a change. It’s also great to hear about the kids that were spared the trauma of DKA or the ER at onset. Since Kycie Terry’s story went viral, many lives have been spared that trauma. By reading about Kycie, they were able to identify the symptoms that their kids were having, they still have type 1 diabetes, yet they didn’t have to endure the long hours of ruling out other things, or most importantly they didn’t have to go through DKA.
Talking about knowing the symptoms brings back a lot of sad memories for our family. My grandson Cooper was 22 months old, he was sick, getting sicker each day that passed even though my daughter called her doctor numerous times that week.
I’m reminded of one of those calls that went something like this: “Cooper is drinking so much milk, juice, water, he cries for more to drink.” Nurse: “Cut back on his intake of liquids.” That statement right there contributed to Cooper going into DKA as quickly as he did. He was drinking a lot, but it was temporarily preventing the Ketones from building up completely, once the liquids were cut back, full on DKA set in. He would have eventually gotten worst even with drinking a lot of liquids, but when a child has Ketones, drinking water is always a good way to help get rid of them, along with insulin.
Cooper had another symptom that week that scared us to death, one not mentioned in the symptoms list, but is common, he stopped walking. He said his legs hurt so bad that he just fell to the floor at my house. Another call to the doctor to hear: “this flu has odd symptoms.” Really, he’s drinking a lot, crying for more milk, he stopped walking, and we’re still being told he has the flu. Finally after a week, my daughter went in to the doctor office, and told the pediatrician that her child had one of two things: leukemia, or type 1 diabetes. The doctor put a cotton ball in Cooper’s diaper, and thankfully he peed on it. High Ketones! Cooper’s blood sugar was over 1000 that day. After 8 long and scary hours of the emergency room, he spent 4 days in the NICU at Children’s. It was the scariest time of our lives.
Every one of us has a story of our child’s diagnosis day. Joey was diagnosed by a fluke, or as I like to say, by a miracle. You can find his diagnosis story and why I think it was a miracle at: https://igotosleepcountingteststripsinsteadofsheep.wordpress.com/2013/05/08/looking-back-at-our-sons-d-day-diagnosisfor-a-disease-without-a-cure/
When Joey was diagnosed he had been displaying “normal” symptoms. He peed his pants that morning while wrestling with his brother. He was “starving” at times, had excessive thirst, and was acting lethargic, actually taking naps after school! We were fortunate, although we didn’t catch the type 1 diabetes based on symptoms – we did catch it early enough that Joey didn’t sustain any long term damage to his organs. Joey was sick in December 2008, and diagnosed in May, 2009, we think that December illness was when his body attacked his pancreas and killed off the beta cells that produce insulin.
We aren’t blaming the doctors in Cooper’s case, we were frustrated, but we should have gone in to the Children’s ER sooner than we did! Hindsight is 20/20, we would have done many things differently now that we know! That’s why we spread the word today!
We feel fortunate that we didn’t end up in Ketoacidosis, or the hospital. Please know and spread the symptoms! They may save a life! The Terry family has heard from up to twenty (20) families that were saved by Kycie’s story, by recognizing the symptoms.
- Extreme thirst
- Frequent urination
- Drowsiness and lethargy
- Sugar in urine
- Sudden vision changes
- Increased appetite
- Sudden weight loss
- Fruity, sweet, or wine-like odor on breath
- Heavy, labored breathing
- Stupor or unconsciousness
If your child or a child you know has any of these symptoms call your doctor and ask for a simple blood or urine test. Our pediatrician office started testing every child after Joey was diagnosed! Please know the symptoms and spread the word!
To the Terry family – we are so devastated by Kycie’s death, thank you for allowing us into your world for 6 months to be inspired by Kycie’s strength and determination! She will forever be a hero in the t1D community!