Wednesday, July 20, 2011

Benign Rolandic Epilepsy & Our Hunt for Keppra

Jamie has a type of epilepsy called *Benign Rolandic epilepsy (also known as benign partial epilepsy of childhood) which accounts for more than one-third of all cases of epilepsy that begin in middle childhood.  Although there is a family history in 18 percent of cases and the condition is probably genetically determined, no one in our family has any type of epilepsy.

Rolandic epilepsy is the most common type of benign partial epilepsy. Seizures start as simple partial, usually beginning in the face. There may be drooling and temporary inability to speak, although consciousness is preserved. The seizures then generalize to tonic-clonic convulsions.

Most of the seizures are nocturnal and occur during sleep. Neurological and other functioning is usually normal, while the EEG shows a dramatic focal spike most often in the centrotemporal regions of the brain. Most children are seizure free five years after onset; by age 14, 95 percent will have undergone permanent remission.  

This is really good news as I had no idea how hard it would be to refill her Keppra until we moved to Texas.  The first pharmacy, Walgreens, didn't refill my script and after calling a few times, found out that the insurance declined it and that was that.  No follow up.  No phone call.  Nothing.  I did get a half hearted apology.  I contacted my insurance company, which the pharmacy should have done, and she authorized the refill.  I transferred the script to Walmart because I just didn't like how I was treated and when you have epilepsy, you can't mess with the medication as the dosing has to be precise and on time.  I dropped it off two days ago and went to pick it up today and was informed that it was back ordered.  Again, I inquired as to why no contact was made and explained how critical it is for an epileptic to not run out.  They checked into the details and told me it would be in today at 3:00.  I received a phone call around 1:00 and it's still out of stock.  They will try again to order and if not received tomorrow, they will send the script back to Walgreens.

I had no idea how difficult it would be to get a script filled here.  Getting the neurology appointment was also like jumping through hoops.  This is WHY it's important to educate and make epilepsy known to others.  Epilepsy is not something to mess with and when it comes to those that respond to medications, those medications have to be routine with no gaps in dosage as it could mean the difference between a seizure and death.

* Thanks to the Epilepsy Foundation for the information.


  1. I had no idea you guys were located in Texas! I live here in San Antonio right now! I'll have to come meet you guys some day if I ever get the chance to see your charities in action.

    I have the same issue with the pharmacy at HEB. I have found that CVS Pharmacy not only gets your refills in on time, but they also take most insurance companies and are much cheaper. You even get money back for your medication!

    Not to mention, they refill your pills for you if you ask!

    Pharmacists need to understand that even ONE missed pill can lead to a horrible life threatening seizure. I wish they all understood. Try switching to a CVS :) God bless your little sweethearts.

  2. Also, I have awarded you guys with a badge for my Must-Read Award! I do it twice a year and you guys are definitely deserving!

  3. We moved here at the very end of May. Love it! Love the heat and sun!

    I haven't found a CVS here and love Target but there isn't one nearby with a pharmacy and with the threat of violence being near Juarez, I don't venture out too far just to be safe.

    Thank you very much!!!!