Her medications also cause her low muscle tone, causing her to be developmentally delayed. She has never slept a full night. She had some seizure freedom after starting the diet, but her seizures have started back up, and she has developed new ones.
Last month she had 46 seizure. We are afraid that it was her Dravet Syndrome progressing. We are desperate for medical marijuana to be legalized before her seizures get even worse.
She has 2 older sisters who love her dearly and hate seeing her suffer. They often go to school worrying cause their little sister had a seizure as they were getting ready for the bus and had to be rushed by ambulance. They often say “I was afraid she was going to die while I was at school.”
If medical marijuana is not legalized soon, we may have to move to Colorado and in doing so leaving her oldest sister her in Pa. Her oldest sister is a half sister, and we have 50/50 custody. It is hard on the girls being away from each other for a week, I could not imagine months.
UPDATE March, 2014
Since starting the weaning process, Allie is now able to walk short distances, up to 5 feet, the day of the hearing she couldn't stand and barely could sit up alone.
This picture is after a complex partial seizure that lasted 10 minutes, after treating it very aggressively. Thankfully, we got to stay home because roads were bad that day.