Taylen, born a bright-eyed bundle of joy to William and Jenece Horton, didn’t experience any issues in the few months of life. That is until her parents noticed at about three months old, that their baby girl was having some difficulty with her arm. Taylen’s arm started to jerk unexpectedly and the infant clinched her fist tightly, which was troubling enough for her parents to take notice.
Her parents started to grow more concerned as they watched their infant struggle and they tried their best to soothe her by opening her fist and rubbing her arm.
But the issue became more intense over time.
Taylen’s parents took her to a doctor’s appointment but the doctor brushed it off as a mere muscle spasm. The doctor told them to keep an eye on Taylen’s condition, but didn’t feel there was an immediate need to worry.
The following month, the morning after Taylen received her first set of shots, her mother Jenece found her in her crib with the same symptom as before – with her arm jerking uncontrollably.
This time, however it didn’t stop and it traveled to her legs and her other arm. Her entire body was jerking and her eyes were fixed. “You could immediately tell that something was NOT right,” Jenece said.
Deeply concerned, Jenece and Will hopped in the car and rushed to the emergency room with Jenece holding Taylen in her arms the entire way. The situation seemed to get more dire as Taylen continued to jerk with foam coming out of her mouth and her lips turning blue.
Jenece and Will thought they were going to lose their precious baby girl.
At the hospital, they took Taylen and immediately began to asses her situation. Doctors told Jenece it was a febrile seizure, seizure due to a fever which is pretty common in babies especially.
However, this seizure was her worst one and had lasted 35 minutes long. The parents believe this seizure caused the most brain damage.
Doctors told Taylen’s parents not to worry, and said it was normal. They treated her and sent them home. All was well.
But almost exactly a month later, Taylen had another seizure but this time it wasn’t due to a fever. It lasted long as well, about 15min sending the family back to the ER. It was at this time doctors diagnosed Taylen with epilepsy and they began their journey with anti-convultant drugs for Taylen to try.
Over the next several months, Taylen was ranging between 25 to 30 seizures a month and was on numerous drug combinations including: Phenobarbital, Dilantin, Keppra, Vimpat, Trileptal, Neurontin, Lamictal and the list goes on and on.
Sadly, none of them worked!
Finally, by the age of one, Taylen was tested positive for Dravet Syndrome at the Children’s Hospital of Philadelphia.
The Horton family finally got an answer but the journey, in fact, was just beginning.
Doctors immediately wanted to put her on Stirpental, a drug from Canada that was designed for children with Dravet Syndrome. At the time it wasn’t FDA approved so it had to be paid for out of pocket. The good thing is that it worked best paired with Onfi, another drug that at the time was from overseas and had to be paid for out of pocket as well.
The doctors also presented another option that they believed could really work and that was placing Taylen on the Ketogenic Diet. They tried it for about a year, it decreased seizures some but it was just very difficult to keep up with.
Jenece and Will then decided to try their chances with Stirpental and Onfi instead. From then on seizures were occurring often and so they just continued to push through trying different medication combinations that lowered seizures but not enough.
The first big break they got from constant seizures was when Taylen was about 3 or 4 years old. Taylen was seizure free for 4 months when they started her on Depakote. She had breakthroughs but months at a time and it was the best control ever!
Now, at the age of 12, Taylen is currently on Stirpental, Depakote, & CBD oil. She also has a VNS stimulator implanted in her that has been beneficial. She has had seizure free spans ranging from 6 months to 9 months!
“We will never give up hope for a seizure free life!” said Jenece.