Helping Our Child Live With A Diagnosis of Epilepsy – Generalized, Idiopathic

A trip to the Pediatric Neurology Department at Vanderbilt Children’s Hospital provided us with a answer about our son’s recent seizure activity.  The diagnosis was epilepsy – generalized, idiopathic with some photolytic response.

Now we start the process of healing.

Helping Our Child Live With Generalized Idiopathic Epilepsy

I’ve written before about the importance of establishing trust with your doctor.  Our first attempt at finding a pediatric neurologist wasn’t encouraging.  But after a third seizure, we were almost resigned to going back to see the first doctor, primarily out of desperation.

Fortunately, a pediatric specialist at Vanderbilt was willing to see us on very short notice.  Thank God for that.

The next day, we loaded up the kids for a trip down.  Since I’m a geek by nature, I had secured a copy of the disk, detailing our first EEG, which was done locally.  The doctor there spent nearly 2 hours with our family, gathering background information and examining our son.  She then took the EEG video and read the results.  In her mind, the results were clearly “Generalized Simple (Idiopathic) Epilepsy.”

Although it wasn’t what we wanted to hear, its probably the best that we could have expected.

Understanding Idiopathic Epilepsy

I’ve come to the conclusion that physicians use the term “idiopathic” to replace “unknown.”  Essentially, the cause of idiopathic epilepsy appears to be poorly understood.  Experts seem to agree that it has a genetic basis, but the genetics are poorly understood at best.  Experts seem to think that, for some people, a gene “turns on” somewhere between the age of 5-10 years of age.  In the case of this particular type of seizure activity, that gene can quite often “turn off” sometime during the teen years.  And, other than having a lower than average seizure threshold, with all the associated risks, people that suffer from idiopathic epilepsy often seem to have no other negative effects.

If the seizures are controlled.

That’s good.

What we can be fairly certain of is that, left untreated, the seizures will continue and likely worsen.  About the only treatment is the use of anticonvulsant medication(s).

That’s not good.

This is one of those situations we’re placed in as parents that leaves us trying to make the best choice for our child, when all the options are bad.  Failure to treat is not an option.  Choosing to medicate can lead to side effects ranging from inconsequential to “depersonalization” and “hostility,” to “impaired liver function.”

Or worse.

With a documented family history and a positive EEG, we’ve chosen to use medication.  Quite frankly, we feel there’s little choice in this regard.

So, we will be watching him closely as we slowly increase the medication to a “therapeutic dose” over the course of the next month.  The doctor tells us that we may see some differences over the first 2-3 weeks, as his body adjusts to the medication, but that in most cases these side effects “level out.”  In the case of the “first choice” medication, most of the potential side effects are behavioral, rather than physiological.

We’ll see.

Fortunately, the kids attend a smaller elementary school.  Having lived in the same school district for the last 10-years, we have developed close ties in the administrators and teachers.  I don’t believe the value of this relationship can be overstated.  They know us.  And more importantly, they know the kids.  We know they’ll do everything they can to help, as we work toward making things safer for our child.

Apparently, the standard treatment process for this type of condition is to medicate for 2 years.  If during that time period, he remains seizure-free, then we try removing the medication to see if the seizures return.  In the meantime, the fears associated with something like a seizure become omnipresent, so worries about water safety and blows to the head from something like trampolines become magnified dramatically.  It’s going to be a learning experience for all of us.

Twenty-four months to go.