Ciao a Tutti! Hello to All!

My name is Anna, and I am delighted to have met many of the people here at Epilepsy.com. In 1954, at the age of 4 months, I became ill with spinal menningitis. Initially, I was diagnosed as having roseola, and it wasn't until my uneducated Sicilian grandmother insisted that the doctor was incorrect that I was brought to a second physician. This doctor promptly placed me in hospital! (Bless you, Nonna!) I might not be here today if that hadn't happened.
I did not speak until almost 2 years of age, when I broke into full sentences. I did not creep or crawl as most infants do, but rather, scooted about on my bottom in a sitting position, using the heels of my legs to navigate. (Sorry,Piaget!) The family story goes that at 16 months, I stood up, and began to run. Part of a loving Italian family, I've many wonderful relatives who always make me smile.
Sometime after entering kindergarden in 1959, my teachers contacted my parents about some concerns they had. I was "staring off" and a visit to a neurologist in Manhattan confirmed that I was having petit mal seizures. (Now called "absence" seizures.) I remember taking a medication called Tridione. It was triangular in shape and I did not like its smell or taste. From the start, I approached things with humor, calling this funny (to a child) pill my "Jimmy Durante" pill. (I couldn't tell you why) At any rate, Jimmy Durante and I were friends until about age 8 or 9. Then, like many children, my petit mal seizures disappeared, which of course, brought my parents relief.
This would prove to be temporary, however, for like a great majority of the population that experiences petit mal seizures in childhood, I developed grand mal seizures in adolescence. This was a very different matter for my family, and I could tell that my loving family was always deeply upset after I had a seizure. I should let you know that for most of my life with grand mal seizures, I never experienced any sort of localized seizure first. (No auras for me...Just Boom!) Seizures here...seizures there...I had seizures everywhere! But throughout it all, my parents, my father in particular, were always there to encourage me. ("Baby," Daddy would tell me in that beautiful New York accent of his, "You went 1 month without a seizure this time....Maybe it will be 2 months next time...") Now, people in the world were not always understanding, and a few, just a few, were simply cruel. I thank God that I've been able to move past that, often realizing that the disability was theirs, not mine. (Again, I credit my parents with that outlook. I'll never forget my father making his feeling perfectly clear: "Baby, If anybody doesn't want to be your friend over this epilepsy thing, well, that their problem. You don't need them as a friend anyway.") My parents asked that I simply "Be smart". I was expected to take my medication faithfully and follow the basic safety rules that even people without epilepsy should follow: "Tell us where you're going...Tell us when you get there...Tell us when you're returning...NEVER go swimming alone. You've still got to do your best in school, you still must make your bed...etc." If I started to get out of line, I was reminded that I was expected to do the right thing. I was encouraged to view medication as a blessing, not a curse. My seizures were not well controlled with any regularity until I was about 19 years old. In fact I experienced Status Epilepticus twice. (Once at 16, and once at 18) This last episode of SE occured during my freshman year at college.
I should say, that I was not a stellar high school student. Under the fog of phenobarbital and Dilantin, remembering was always difficult for me. The abstract concepts presented in Math and Science seemed impossible to grasp and proved most frustrating. I much preferred English and Drama. (Back then, in the dark ages, 504's and IEPs didn't exist. Medications taken by a student were really never taken into consideration by teachers. I am still in touch with my high school English Teacher who tells me.."We knew you were intelligent, but you just didn't have it together. We didn't know if this was intentional or not." How interesting to learn this years later! As a result, my high school guidance counselor told my parents that I wasn't "college material." My parents, who were always result oriented, could see why he said this with each so-so report card. I, on the other hand was very stubborn and INSISTED that I go to college. Through my youth group at church, I had been volunteering to work with a child who had Downs Syndrome. His older brothers were going to Georgetown to become Special Education teachers and this seemed WONDERFUL to me. Through the kindness of another teacher on staff, I was referred to a gentleman at the admissions department at the college I would attend. It wasn't always easy...especially for science and math...but I earned my BA/English with Provisional Certification to teach Elementary and Special Education in the State of NY. I taught children with Learning Disabilities/Mental Retardation until I gave birth to my own chidren after John and I married. I was home many years with my three children, but returned to teaching 12 years ago. I am now a second grade teacher. I completed my graduate work in 1999 and now hold an MS in Special Education. In addition, over the years I have worked a bit in theatre and film. An award from the NYU Tisch School for Excellence in Emsemble Acting for work on a film student's senior thesis was an unexpected pleasure.
For many years my epilepsy has been managed well with Dilantin only. I enjoy perfect control, drive, teach, act, and always look forward to learning something new.
Things have changed a bit now that I am older. In the past few years I've started experiencing occasional simple partial seizures. Those of us taking the older classes of anticonvulsants need to be very careful as we get older. I came down with peripheral neuroptahty a few years ago, and now that I am entering menopause, it has become very clear that my seizure medication is negatively affecting my bones: My dentist sees bone loss in my jaw, I've developed degenerative arthritis in my feet, and a recent dexascan showes osteopenia...the precursor to osteoporosis. Oh well, St. Theresa of Avila is well known for having said, "...Only God never changes..." I've just had a VEEG in hospital and will be meeting with my epileptologist (Great Guy!) very soon to discuss which medicines I may change to. My life with epilepsy is taking a turn, and I look forward to seeing what's in store. Am I worried? A bit. Sure. This could change many things...especially if I have a breakthrough seizure or two. What if the new meds don't work as well? Will I have to give up my drivers license? All these questions will be answered in time. The important thing is to NOT let any of this paralyze me. I will move forward. So will you!
Parents of children with Epilepsy take note: YOU have a marvelous OPPORTUNITY to help your child move forward in his or her life. Try not to project your fears or worries upon your child. Teach him to "Be Smart" as my parents did. Let them know that while there are some in this world who won't understand, there will be MANY who will. My family and my friends are my joy. I love my life, and have been able to accept the fact that my epilepsy is, to a degree, an integral part of who I am. It is not, however, my soul, my heart or my mind.
Hold your head high and show the world what you can do!!!!

Corraggio!
Anna