Treasured and Enjoyed

Often when I meet parents with young children or people who live with epilepsy, (or any other genetic conditions) the first question they ask me is, “What medication are you on?” These days I have a general response as my TSC has stabilized, I have therefore found medication that works for me. However, this has not always been the case; when I was two years old, I was officially diagnosed with TSC. My paediatrician at the time, (Dr Greef) put me on Tegratol in the hopes of keeping me alive, (while my mother found a paediatric neurologist). It worked.

My mother and father struggled greatly to get me to drink the syrup. Each evening my father would hold be down, while my mother forced a syringe into my mouth. It was a difficult process for both of them. Eventually, my mother tried tasting the medicine; it tasted like battery acid! She finally understood why I disliked it so much. Regardless, it kept me alive and functional, thus I just had to suck it up.

As time past, all was bliss. We met Dr Aduc for the first time when I was nine; she was the best doctor I had ever encountered at that point. She monitored everything and anything, adjusting the Tegratol as my body changed. This worked, until I hit puberty.

Puberty is already strange and difficult for normal teenagers. For kids with genetic conditions, puberty is ten times more challenging. My body completely rejected the Tegoral. I went from having 3 seizures a week, to having 140 seizures a week; or 20 seizures a day. Dr Aduc and my parents tried everything, from Epival to Epilim. A to Z down the medication list we went; my body rejected all of them. Eventually, due to all the seizures I went into a trance like state. Everything slowed down, my schooling stopped, it felt as though the world had stopped. I would go to bed not knowing whether I was going to wake up the next morning. Life was a blur. Just a side note to the parent reading this – I have no memory of those two years, I rely a ton on my mother to feel in the blanks for me.

Finally, after two years of non-stop research, Dr Aduc found a medication called Keppra. New on the market, only tested on adults in the USA; I was the first child to use Keppra in South Africa. It was risky, as I was young, regardless of this, my weight allowed me the opportunity to try the medication. The Keppra worked. My seizures were reduced immensely, and I came out of my trance. My parents were grateful, as was I.

My seizures have been stable ever since. As time has passed, I have experienced other complications which, have affected my medication; for example: weight, diet and other hormonal changes. The most challenging “complication” however, is taking my medication on time. Therefore, since I started the Keppra all those years ago, I set two alarms on my cell-phone. These help me to take my meds exactly 12 hours apart, which has help tremendously to keep my body balanced. What I have learnt from the whole journey is; it takes some experimenting in order to find balance. Once found, balance should not be taken for granted, it should be treasured and enjoyed. 

Medication Alarms 

Medication From Dischem

Orange pills - Tegratol. Yellow and Blue Pills - Keppra