Name: Amanda

Sex: female

Date of birth: June 2003

Now lives in: Illinois, United States


Epilepsy info

Diagnosis:
Dravet’s Syndrome: We received the positive DNA results in January 2006 but have known in my heart since she was a year old that Amanda had the syndrome.

type(s) of seizures:
Partial (focal), Myoclonic, Abscence, Tonic Clonic, Head Drops, Complex Partial

frequency of seizures:
Amanda has 100’s of myoclonic and head drops every day. Since starting the diet in 2004, we only have tonic-clonic and partial seizures when ill.

Medications used

Current:
Keppra, Clobazam

We just started Clobazam a month ago and are starting to see a decrease in the intensity of her myoclonics. Her head drops are less frequent, so she’s falling a lot less than a couple of months ago.
My daughter is starting to laugh and giggle..every day since we’ve started Clobazam!



Previous:
Phenobarbitol, Topamax


Alternative Treatments

Ketogenic Diet


Personal Notes

We started this journey when Amanda was 6 months old and had her 1st status partial seizure on the left side….5 days before her 1st Christmas. We started Phenobarbital and 10 days later, she had another partial but on the right side. At the time, one of the Drs at our facility mentioned Dravet syndrome to our Neuro. We started to notice absence and myoclonic seizures at 10 months old. By the time she turned one, she was having 100’s of myoclonics a day.
We try to live each day to the fullest and are thankful for having Amanda today. Her good moments (smile, bright eyes, and silly laugh) are so incredible that they help us get through the tough hours of each day.


Contact

Mum: Brenda (jbniemi@sbcglobal.net)


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