Bailey James Bandura was born April 30, 2010, after a perfect pregnancy and 2 hours and 13 minutes of labor. She spent the next six months and eighteen days full of laughter, smiles and babbling.
On November 19, 2010, she had her very first focal seizure lasting over twelve minutes. However, we did not know that it was a seizure. It wasn’t like what I had seen on TV. It wasn’t until seeing a pediatric neurologist on December 26, 2010, that we knew what it was. She had two more seizures the following January and then the doctor requested genetic testing to be done to “rule out Dravet Syndrome”.
After many weeks of waiting, we finally got the results after yet another hospitalization for her fourth and scariest seizure yet. It was positive for Dravet Syndrome. Our lives changed forever. The first drug we started her on was Keppra, due to the fact it didn’t seem to do any organ damage and was “safest”. That was January 2010. Her behavior changed, at 8 months, only a week or two after starting Keppra, she started having tantrums, the side effect of Keppra. After we got her genetic results,in March, she began Depakote and Frisium (which was not covered by insurance and had to be imported from Europe). After a few months, realizing the drugs didn’t seem to work, we tried the Ketogenic Diet, which she is still on. Now, not only is she on these drugs that have all sorts of side effects and hold her back developmentally and don’t work, she is also on a restrictive high fat diet, that also does not keep her seizure free.
She is such a strong little girl, and quite the trooper. She is mostly non verbal, but has been progressing in this area lately. She seems to have a seizure every 2-3 weeks, lasting anywhere from 7-45 minutes, we no longer use rescue medications, so we have to wait until the seizure “feels” like stopping.
We have started weaning her off the Ketogenic Diet and hope to wean her off the drugs she is on. Why keep putting them in her system if they don’t do anything? We have both her neurologist and pediatrician on board with her using medical marijuana.
Unfortunately, what she needs is not available at this time. Our family and doctors feel this is her only option and are all pulling for easier access.