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Parenting a Child with Epilepsy: A Journey

Posted Jun 05 2009 5:07pm
Today we are lucky to have another guest post. Kristi and her husband are farmers in rural Saskatchewan and proud parents of five wonderful kids. Among her many accomplishments, Kristi instructs a taekwondo club and spends her spare time training for her 5th degree black belt.

Three years ago Kristi and her husband learned that their son has epilepsy. It has been a life-changing experience for them and their family. Here is the story of her journey so far.

Part 1.
Parenting a Child with Epilepsy: A Journey

A parent’s job, by definition, is to love, nurture, protect, care and advocate for their children. As a parent of a child with epilepsy, some of those duties become complicated and out of focus. Of course, we love our son. But now, we also love him with lots of time and energy spent on handling his seizure disorder. We love him with trips to the city for appointments: specialists, therapies, regular check-ups, tests; two hours each way, and of course fries on the way home. We love him with unexplained tight hugs, tears and time ... lots of time; Sometimes time to the exclusion of time with his sisters. We love him when he is crying as they jab him again for more blood work- we love him and we hold him down. We love him when he is overwhelmed, tired and unable to process, when he is freaking out yet again in a public place. We love our son in ways we never expected to have to love a child.

As for the care and advocacy part- it can become a full time job. We research, inquire and hound our sources of information time and again as something new pops up and we question again, whether the behaviour is within the realm of ‘normal’. I think, as a parent of a child with a seizure disorder, we spend an inordinate amount of time asking questions, many which can not be answered. The hard part of all of this is that no matter how much we love our son, how much we try to protect him and get the best care, treatment and therapies for him, we cannot change the outcome of this. Our son has an atypical seizure disorder. He can have a variety of seizures within a small amount of time, and there is no predictable pattern. He has been tested for the usual culprits- Lennox Gastaut being one of them, and after sending bits of muscle and tissue, cerebral spinal fluid, blood and bone all over North America, we have no more information than we had when we started; Just a son with less bone, muscle, tissue and an innate fear of hospitals. Along with the seizure disorder, our son has a condition called Chiari Malformation type II. So he has had brain/spinal surgery along with the epilepsy stuff. He had a skilled surgeon and a wonderful follow up MRI, but there will always be lurking doubts and concerns, fear that he could one day start to lose mobility.

The most disconcerting and disheartening fact of all of this, is that there are no absolutes. Our daughter has a bladder condition, one she will likely grow out of; one that can be seen on tests and measured and handled without pharmaceuticals that have devastating side effects. In effect, she has a plumbing issue- and one that is easy to treat. Our son has a computer problem- a bug, a virus, a cookie enabled somewhere in his brain. And no matter how many ways they look at it, they can give us very little more information than our first terrifying visit to the paediatric neurologist where we first heard the term ‘epilepsy’ with regards to our son. He was two. And while millions of dollars every year is spent on epilepsy research in North America alone, so far, they have only been able to churn out drugs that may or may not have any effect on seizures. And with the drugs comes a cost no one is really willing to address, because they work, sometimes. While this may all seem very demanding- the mother in me wants to demand that we Find Better Drugs! Especially with recent reports that a number of anticonvulsant drugs are linked to higher rates of suicide.

Ultimately, this is all a journey. One my husband and I, not to mention our son, who is five now, were not prepared for. One we find that allows us to get complacent for only very short amounts of time before we must get up, research, act and question once a again. Please join me on this journey and we can discuss together this anomaly called epilepsy and its effects on the life of the person with epilepsy, their family and caregivers.

-Kristi
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