Hi everyone, this is Braelynn Love Ann Rochlin.
When Braelynn was born she was a perfectly healthy baby, until 36hrs of life. This is when she had her first seizure. From that point on our entire lives have changed.
In the beginning we were unsure if this was something she was going to battle long term or not. Unfortunately she has now been diagnosed with Chronic Epilepsy. And still after 2 Genetic testings we do not know the cause or where the source of the seizures are coming from in her brain. We’re currently waiting for the 3rd Genetic test to come back.
They started her on 2 medications while in the NICU for seizure control, since then they’ve had to add 3 more. This is because Braelynn continued to have breakthrough seizures on her meds. We would increase her dosage amount based off weight, then would have to add another medication because we could not increase anymore.
She is currently taking Phenobarbital, Keppra, Clobazam, Topiramate, and Oxcarbazepine.
Still with all of the meds she continued to have breakthrough seizures. Since January 24th, 2021 she has been transported via ambulance to St Charles Hospital in Bend 8 times. 5 of those 8 times she had to be flown via plane to Dorenbechers Hospital in Portland. All 5 flights were necessary because she would go into Status Epilepticus which means she couldn’t stop seizing, and being pumped full of rescue meds, they would have to intubate her.
On June 1st we were introduced to the Ketogenic Diet that has been proven to help decrease or even eliminate seizures. Our goal starting the diet was and still is to keep her from having to be flown to Portland. Which means her not going into Status Epilepticus.
That goal has worked so far, but she continues to have breakthrough seizures that results in us being hospitalized.
Our family is struggling to say the least. We struggle watching our daughter go through this and there’s nothing we can do but be strong for her. And how often we have to be away from our other two children. We’re also struggling financially, with all the hospital visits, flights, and of course me not being able to work.
At this point there’s no end in sight, but we’re hopeful and optimistic. Thank you to whoever takes the time to read our beautiful daughter’s story. She truly is an epilepsy warrior, she keeps us strong.