|
A Glimpse into the World of Epilepsy: Rylie
by Laura Nantau
The click and whirl of the feeding pump provides the background noise, doing its work in a mechanical and measured way, ticking off the appropriate doses as our daughter, Rylie, sleeps. It has been six weeks since Rylie received her enteral feeding tube; a month and a half since a barium swallow test revealed that she can no longer sufficiently coordinate her swallowing without breathing in her food. It is yet another loss for Rylie, who was born with a rare form of epilepsy that has robbed her of the possibility of a 'regular' or long life. At 14 months old, Rylie is legally blind, unable to walk, roll over, talk, hold her head up or hold objects in her hands for any length of time. Her chronological age belies the fact that she is probably eight weeks old in terms of development; she will never make any substantial developmental gains. Her short life has been filled with numbers: it was at three weeks of age that we noticed the eye flickers and stiffness; six weeks old when she was first admitted to hospital, underwent the usual battery of neurological tests and was diagnosed with an ambiguous 'infantile encephalopathy' that seemed resistant to every anti-convulsant we tried. Rylie would have dozens of seizures a day, one after another, minutes apart.
We traveled hundreds of kilometers several times during the summer of 2006 back and forth from our home in Windsor, Ontario to London's Children's Hospital of Western Ontario until finally, when Rylie was five months of age we received a definitive diagnosis from the doctors at Toronto's Hospital for Sick Children--Migrating Partial Epilepsy of Infancy (MPEI). Rylie was only the second child they had ever seen up to that time with MPEI and the prognosis, they told us, was not good. Her almost continuous seizures, which begin in one part of her brain and then spread or migrate to other areas would continue to hinder the development of her psychomotor skills, leaving her with no purposeful movement of her arms or legs; she would be left profoundly developmentally delayed and at risk to pneumonias and other illnesses. We found out through testing that she had cortical visual impairment, some atrophying of her brain and her life expectancy would be, at the very best between five to 11 years, though many children with MPEI have succumbed at much earlier ages.
To say we were devastated would be a gross understatement. The more we learned about MPEI, the worse my husband and I felt. We didn't know why this happened to Rylie, and indeed, blood test, lumbar punctures and neurotransmitter testing came back normal. With treatment options limited due to the aggressive nature of MPEI, it took many months before we finally found the right mix of anti-convulsants for Rylie, stemming the tide of seizures she would have from dozens to maybe ten to twenty a day. Through the internet, we met other parents who have children with MPEI overseas, and have formed our own little support group. We help each other by swapping medication and treatment information as well as our own everyday experiences as we try our best to hang on to our children; to find them somewhere amidst the electrical storms in their brains that has put them out of our reach. But on good days, I have caught glimpses of who my beautiful second daughter is despite these interruptions through fleeting and all too few smiles; her soft coos when something has made her happy and I savour these moments and try to remember them on the bad days.
Rylie sleeps on as I write this, the ticking of the pump silenced, it's job done. I think of how much I have learned through our family's journey with Rylie and her illness and how epilepsy has impacted our lives in such a profound and devastating way. It is difficult not to be angry, to feel cheated by this disease that has robbed my child of her potential and eventually, her very existence. Through our short time together, however, Rylie has taught me that love can guide you through places you never dreamed you could go and that courage can come in the tiniest and most angelic forms.
For more information on Migrating Partial Epilepsy of Infancy, there is a website: harrysjourney.co.uk
|
