Monday, November 17, 2008

Epilepsy Fighter

Hey there my name is Kanae, and i have Epilepsy, i was diagnosed with the disease when i was three years old, i am now 16 i have been suffering and dealing with epilepsy/ seizures for 13yrs, epilepsy plays a big part in my life im constantly in and out of the hospital as well as the ICU due to the frequent seizures i have, it has been a rough road for me but i try to always stay positive and keep a smile on my face, having epilepsy is hard for me because i can never be left alone when doing things, i also have to wear a helmet that protects my head when and if i fall having a seizure, sometimes i wet myself during my seizures which is very common for me so im in diapers most of the day so when a seizure occurs i dont mess my clothes, i have a nurse with me 24/7 , i have to have a nurse because the severity of my seizures, im also home schooled because my seizures make it impossible to attend a public school, im hooked up to a heart rate monitor all day everyday to ensure that everything is ok when i go into a seizure, i have something called a pic line in my arm, its an I.V. line except unlike the ones at the hospital this one last longer and is more effective because blood can also be drawn from it with out getting poked like fifty million times :) and i have the pic line for my medications and for when i go into status epilepticus where my seizure activity continues without stopping , which causes for Immediate medical intervention, and thats where my nurse comes in and injects me with diazepam, Ativan, lorazepam or valium to stop the seizure before i stop breathing die or worse.I wanted to create a blog spot where i could answer any questions about this disease, or to be of any support to other ppl who also suffer with this condition. The kind of seizures i suffer with are called tonic clonic or grand mal, which causes my hole body to shake and lose conciousness , i take three different medications to try and control my seizure activity, the first being Phenobarbital and i take this medication through injections, the second medication i take is Dilantin capsels 100mg 3xs a day, and the third medication i take i Dilantin infa tabs 50mg 3xs a day as well. On a good day i have about 20 seizures on a bad day i have about 50, ive been hospitalized numerous times due to my seizures, my heart has stopped before as well as my breathing. "WHAT " is a seizure a seizure is a sudden electrical disturbance in the brain kinda like a malfunction or system overload its where the brain cant compute any information or movement everything goes haywire, and the neurons in the brain start to firing off which intern cause a seizure, there are several types of seizures , myoclonic. tonic clonic, absence seizures, atypical absence, atonic, simple partial, complex partial and secondarily generalized, there are also different conditions which can cause a person to have epilepsy or seizures such as Autism, lennox gastaut syndrome, mitochondrial disease and Angelman syndrome, to list a few. A seizure normal last from 1-5mins or 2-4 mins when a seizure last long then that a person is experiencing status epilepticus this is when a person has continuous seizure activity without a pause regaining of conciousness, this type of seizure is an EMERGENCY and 911 should be called, this can be fatal if not stopped. Well a little bit more about me and my life with epilepsy is that ive experienced a couple of status epilepticus seizures in total about 40 in my whole life, where my heart stopped and i had to be put on the pads which is like the defibulator without the cords it beats your heart for you until your heartrate returns back to normal, i also stopped breathing and was placed on a ventilator, when i was six years old i fell into a coffee table and hit my head during a seizure, and i am now deaf in my right ear and wear a hearing aid due to that seizure. my life is normal except for having epilepsy.If any one has any questions dont hesitate to ask :) , umm and also epilepsy is a medical condition not a mental one for those who think otherwise, epilepsy is in no way contagious or catchable PERIOD ........Thank you i can also be contacted on myspace or on youtube