Purple Day March 26th 2013 Supporting Epilepsy Around the World

Purple Day is something near and dear to our hearts in our house. My 8 year old has Epilepsy and has had it basically all his life. Its something we live with but we try and not let Epilepsy control our lives. There are many different types of seizures and different types of Epilepsy syndromes. I think at some time or another we have nearly seen all the different types of seizures. My son was diagnosed at 8 mths old with Generalized Epilepsy when he had 3 Grand Mal seizures but with what we know now about seizures he probably had been having them since before he was born. At 11 months old he was diagnosed with Infantile Spasms a horrible form of epilepsy. We saw first hand what this type of Epilepsy can do to a child. Finnian has brain damage from a stroke but was developing slower than a normal baby but when Infantile Spasms hit him he was like a new born baby all over again. Sabril was a drug that helped calm his Infantile Spasms and at the time it was not FDA approved so we had to get it shipped in from Canada. Thankfully now it is available in the USA through SHARE. So now we had decent control over his Infantile Spasms but then his other seizures were all over the place so we started adding and changing his medications to try and get control of his seizures. By the time Finnian was 19 mths old he was showing another type of Epilepsy Syndrome Lennox-Gastaut Syndrome. Its a type of Epilepsy that is hard to treat as the seizures become resistant to the medications. For Finnian to give him his daily normal life he takes a lot of medications some of them he has to take 3 times a day, he is also on a special high fat diet and we cannot even go around the corner with out his rescue meds because you never know when you will need them. Even with all of that he still has seizures. Finnian is at high risk for SUDEP which is Sudden Unexplained Death in Epilepsy. Its not something that is normally discussed but it should be explained if and when you, your child, grandchild, spouse,or whom ever is diagnosed with Epilepsy. Finnian's brainwaves Getting brain waves read He has his head wrapped up This is one round of medications that Finnian has to take he takes meds 3 times daily Finnian's daily meds he takes This was when we couldn't stop his seizures and he had to be put into a medically induced coma and put on a ventilator to stop his seizures Here he is with his big brother and sister