Life couldn’t have been more perfect.  My husband and I had great jobs, we bought a house in the country and we had 2 healthy twins, a boy and a girl.  Life was good.  We moved to our house when the kids were 2 years old. A year later, life as we knew it would never be the same.  Shortly after the kids turned 3, our daughter, Sydney started having seizures which turned into a constant twitch that started in her face and quickly spread over her entire body.

At a follow-up visit with her neurologist, the twitching was diagnosed as EPC, Epilepsia Partialis Continua. He suggested starting four medications to try and control it and Sydney was admitted that day.  After a week of numerous medications that did not work, her doctor wanted to try a 48-hour drug induced coma to let her brain “reset” and hope the EPC would stop.

During that week of trying medications, Sydney came down with the flu from other patients on the floor that had severe cases of it.  The coma lasted 6 days instead of 2 days since the medication for the coma was overshot.  Little did we know, the flu attacked her lungs shortly after being intubated for the coma. Having the flu while being intubated, resulted in Sydney being put on life support for 16 days.  Life seemed to be spinning out of control and we came very close to losing her twice during those 16 days.  All of the odds were against her and she beat them, the proving doctors were wrong.  She also developed a life threatening DVT blood clot from a central line during this time as well.

Sydney was severely deconditioned from being in a hospital bed for such a long time.  She went through 3 weeks of intense inpatient rehab before coming home 87 days later from what was supposed to be just a follow-up visit.  She gained back everything she had lost, from learning to eat to walking.

Once Sydney was home, a few months later she started regressing. Turns out her seizure medication was an extremely high dose and turned her into a vegetable for the next year.  She lost everything she just gained back in rehab.  Our fight was not only to figure out the seizures but also dealing with the numerous complications.

Even during the darkest days where we almost lost Sydney to every little set-back, we never lost hope.  It is really all we had. Sydney has stumped the doctors from several institutions.  After numerous tests that have come back normal, they have no idea what is wrong with her or how to treat it.  We felt so alone fighting this battle since all these doctors have never seen anything like it until recently.   We found another little girl with the same symptoms through an article on CNN and the NY Times about the Undiagnosed Disease Program at the National Institute of Health.  We are no longer alone.

Now we are sharing hope across the miles from the East Coast to the West Coast that they can figure out what is happening to our little girls.  As soon as we found this family, we knew more children had to be out there fighting the same battle.  That is when Syd’s Kids formed to try and spread awareness and never lose sight of hope.  A movie has been made and is currently on YouTube.  The movie has reached people around the world.  We are hoping that if we find enough children with the same symptoms it will point to a clue as to what is causing this and hopefully a successful treatment.

Hope is a powerful thing.  Each day is a challenge and all you can do is to never lose sight of hope.  We don’t know what monster has taken over our girls.  We don’t know how much time we have since there is no diagnosis.  We don’t know what we are going to face from day to day.  All we do know is that another family knows what it is like to live in our shoes.  That in itself strengthens our hope and gives us strength to keep on fighting for our daughters, that some day they will figure this mystery out.

Carrie Marko
Pennsylvania

 

1 thought on “Epilepsia Partialis Continua – Our Perfect Life Spins Out of Control”

  1. Michelle says:

    please contact me. daughter, now 10, has same diagnosis due to cortical dysplasia/variant form of ADNFLE.

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