Think Lavender - Part Two

March is Epilepsy Awareness month. This cause is near and dear to my heart.

Let me introduce you to my precious grandson. You would like him if you knew him – he’s a spunky 5 year old with big brown eyes, crazy hair and more determination than I’ve ever seen.

He was a happy, healthy, energetic and seemingly completely normal little boy until, on March 27^th, 2008, he suffered a lengthy seizure and was taken to hospital. Two weeks later he had another and was subsequently seen by paediatric neurology at Alberta Children’s Hospital.

Many unpleasant tests over the next few months followed, medications were changed and adjusted, and that September, he was diagnosed with Myoclonic Astatic Epilepsy (sometimes called Doose Syndrome) which is considered a catastrophic form of childhood epilepsy because of its resistance to drugs and therefore its poor prognosis and its degenerative effect on cognitive ability.

Since that ghastly day in March, he has had hundreds of seizures which have included several different types – multiple seizure types are a characteristic of MAE. He was often tired, disoriented, and bruised as a result of what is happening to him and the drugs he was taking.

Needless to say, this diagnosis and its implications have devastated his parents, his brothers, his grandparents and his extended family and friends. His parents struggle to keep life on an even keel, advocate for and educate others about MAE, and cope with each day as it comes. The little guy, thankfully, doesn’t remember what happens to him when he seizes, and sometimes forgets other things as well. We can only pray that his struggle will eventually end leaving him with minimal damage and a chance for a normal life.

Currently, his seizures are controlled by medication but the ongoing problems caused by the seizures or the medication or a combination of both make his life difficult. He is fragile, has a tremor which affects his fine motor skills, left side muscle weakness, hot and cold sensitivity, and a challenged immune system.

He also has some interesting quirks and behaviours that for the most part, keep us smiling. He is smart, kind, sensitive, patient and very articulate. His wonderful personality shines through bringing joy to those who love him. No one knows what his future holds but if hope, love and determination can move mountains, then as this little guy grows up, he will be a force to be reckoned with.

Epilepsy is not selective. It pays no attention to gender, race, culture or socio-economic background. Some cases are caused by head injury or congenital defects, and there is a hereditary factor, but in roughly 60% of cases, no cause can be determined. For further information, contact www.epilepsy.ca or www.epilepsycalgary.com