Daytona was born in 2014, and is the youngest child of 3. She was completely healthy when she was born.
In summer 2015 Daytona had a 20-minute Grand Mal Seizure. At that time, it was just chalked up to it was febrile. She had nothing for awhile after that. She was a smart young lady and ahead in all milestones.
In May 2016, Daytona had multiple long seizures considered status epilepticus. She was sent home that night saying they were febrile. The next morning, we woke up to Daytona seizing again. Nothing was working so we went to the hospital again. We were told this was again febrile. (With no evidence of a fever or sickness)
This happened every week for about a month, and we were told the same thing. I finally called my other children’s pediatrician, and he agreed they were not febrile. He ordered an EEG right away.
Less then a week after the EEG he had called me at 930pm to tell me she has primary generalized epilepsy.
She didn’t have any seizures until end of July 2016 again. When we took her to our local ER again she was given seizure meds, as I had her EEG results with us.
We were sent home. She started acting funny. we kept a close eye and continued the meds. The next morning, she was off. So, we loaded her and drove right to Regina. She was in status again. She was also allergic to the meds. She was on 3 anti-seizure medications by the age of 3. Daytona had regressed and no longer made sense and developmentally behind. She also developed Sleep Apnea.
She was doing well until October 2019 when she went into Status and we took her to our local hospital, where the dr consulted with Regina and they gave her medication. I’m glad our dr in our hospital decided to only give half of the dose she was told.
Shortly after the meds were administered her eyes rolled back in her head and she was unresponsive.
Since 2019 Daytona was doing well, except she did have Epilepsy, Sleep Apnea, Sensory Processing Disorder and Global Developmental Delay.
Until June 2021, Daytona took very ill and ended up having to be air lifted to Saskatoon.
She had Urosepsis / Septic Shock. Her platelets were low, her organs were not working, she required oxygen, and got albumin, platelet and red blood cell transfusions. She had a PICC line placed and required TPN. Then NG feeds. She was super sick and slept for 10 days. She then developed thrombocytopenia. A lot of things dropped like Carnitine, Iron, folic acid etc. She was in Saskatoon for 17 days. She was released, even though she wasn’t eating or drinking. Her Platelets started to drop again.
With a quick discussion with her wonderful pediatrician (who called and texted everyday she was sick). We booked to have a NG feeding tube placed for Nutrition and fluids. Before that was placed, she was rushed back to Regina as her heart started to act up. Where she was then sent to Saskatoon. Daytona was very pale/yellow and was very weak most of the summer.
Daytona has slowly recovered from this illness. She was able to have her NG tube out October 17th. She’s eating and Drinking well. However now she has developed a lot more medical issues and we are following up with many specialists. Since July she hasn’t required a hospitalization. However almost weekly or every other week since she has had to go to Saskatoon or Regina for appointments. Her list of testing and appointments and diagnosis keep growing and we are learning as we go.