Living With Epilepsy

The Sep­tem­ber 2008 issue of Par­ents Mag­a­zine has a great arti­cle about a Mass­a­chu­setts fam­ily and how they dealt with their son’s epilepsy.  (Unfor­tu­nately it was not posted on their web site, and did not turn up in numer­ous web searches.  Should you find a link please let me know)

The story cen­ters around a young boy named Michael, who suf­fered from 2 types of seizures that sound very sim­i­lar to those that my son expe­ri­ences.  The sim­i­lar­i­ties between the descrip­tions their lives to our day to day real­ity was strik­ing.  Michael’s par­ents spoke about how their child suf­fered through hun­dreds of seuzures a day, and how they “got used to liv­ing in cri­sis mode.”

I don’t want to paint this as a neg­a­tive story, as it was actu­ally quite infor­ma­tive and inspir­ing.  As par­ents of a child with epilepsy, we are often asked what our fam­ily life is like.  This arti­cle really sheds light into much of what life is like for us, and I imag­ine what life must be like for many other fam­i­lies who have a child suf­fer­ing through epilepsy.

Their story has a happy end­ing, as their son Michael has now been seizure free for some time thanks to the right med­ica­tions, early detec­tion, and a lot of luck.  I am thrilled for Michael and his fam­ily.  I imag­ine that hav­ing Michael seizure free must be a won­der­ful feel­ing — one I hope we might expe­ri­ence some­day.  Read­ing this arti­cle helped to fur­ther that hope.

One thing that we defi­nately share with Michael’s fam­ily is this.  Our expe­ri­ence, like theirs, has taught us not to sweat the small stuff in life any more.

The arti­cle also fea­tures the fol­low­ing facts about Epilepsy: (Taken from the Par­ents article)

• The Brain is made up of 100 Bil­lion nerve cells, which com­mu­ni­cate with each other and the rest of the body.
• A seizure is trig­gered by abnor­mal elec­tri­cal activ­ity that causes a change in sen­sa­tion, move­ment, behav­ior or consciousness.
• Doc­tors diag­nose epilepsy after a child has two or more unpro­voked seizures, which means that they aren’t caused by some­thing exter­nal, such as a fever.
• Epilepsy is actu­ally an umbrella term cov­er­ing many dis­eases and syndromes.
• Epilepsy affects about 3 mil­lion peo­ple in the United States, and 45,000 chil­dren are diag­nosed with epilepsy each year.
• There are 30 types of seizures, which can last from a few sec­onds to two min­utes or longer.  In rare cases, they can be fatal.
• Drugs, surgery, or a spe­cial high fat / low-carb diet are effec­tive in about 80% of cases.  Kids may be good can­di­dates for surgery if their seuzures — unlike Michael’s — can’t be con­trolled with med­ica­tion and are caused in a spe­cific area of the brain.

If you would like to learn more about epilepsy or need help deal­ing with epilepsy, please visit the Epilepsy Foun­da­tion of West­ern Ohio at www.ohioepilepsy.org

The Epilepsy Foun­da­tion is always look­ing for vol­un­teers.   If you would like to join in the fight against epilepsy, please visit the vol­un­teer page of the EFWO site.