Thursday, April 3, 2014



Allie is a year and a half and suffers from Dravet Syndrome. Her seizures started at 4 months of age, and she had weekly seizures averaging 25 minutes in length, the longest being an hour long, until she started the ketogenic diet at only 11 months old. She had a g-tube surgically placed at 7 months old due to medications taking away her appetite.

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.
The picture above, the one of Allie on the floor, is of her seizing and her sister soothing her saying “Its ok Allie, I’m right here” and “Come on Allie I know you can pull through this.” That seizure lasted 20 minutes and the whole, time her sister was there.

UPDATE March, 2014

Since the hearing for SB1182, Allie has had 71 seizures, despite being on 3 benzodiazepines.  We have weaned her off of one completely and are in the process of weaning another.  These medications have absolutely no effect on her seizures.  The only thing the medications have done is hold her back.  

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.

No comments:

Post a Comment