Amanda was born April 12, 2004. She was a healthy 7lb 5oz baby. She was a little collicky but a happy baby. At 5 1/2mo old, I was waiting for my son’s bus to take him to kindergarten. We had a gastroenterologist appointment to see why she was so fussy. Before the bus came, I noticed Amanda seizing in her car seat. This first seizure lasted at least 45 minutes before the ER doctors were able to stop it. She didn’t seize again for another 2 months then another month after that. That was when she was
placed on meds. Despite trying a few meds, she still was having a big seizure about once a month.
At 2 years old, her doctor referred us to a doctor at Montefiore. This was when she was first diagnosed with Dravet Syndrome. At 2 1/2, we started Amanda on the ketogenic diet. This stopped all longer seizures for 2 years. We thought we had our miracle. But the seizures crept back and we started experimenting with new medications to try to help.
Fortunately, Amanda has been more the exception in the Dravet spectrum. She is funny, witty, friendly and a pleasure to be around. She does have learning difficulties at school but given time, she will progress slowly. Despite her great development, she continues to have seizures daily. Mostly absences and myoclonics. On a good day she may have several. On a bad day several an hour or they will evolve into a grand mal, complex partial or status absence. We never feel comfortable with her seizure control
and hope to try medical marijuana to try to lower her current meds and possibly taper her off her diet. We know it may not be a miracle but are very anxious to have her try it. Now that NY has passed the Compassionate Care Act, we havethe hope to try to help her lead a “normal” life. Currently, her seizures and triggers have us limit her activities… it’d be wonderful to have her do more things a typical 10 year old does instead of telling her NO all of the time.
In the news: