Sunday, August 7, 2011

How is Epilepsy Treated?

At Robert’s recent EEG appointment, I overheard the nurses talking about epilepsy and how it is a “forgotten disease.” They said someone needs to shine a light on epilepsy and thought if a celebrity had a child with epilepsy it would help raise funds for research. I don’t know about that since there are celebrities with epilepsy in their families and the disease still hasn’t really been one to “catch on” as far as funding.

I’m not a celebrity but am all for shining a light on epilepsy!

Epilepsy is the third most common neurological disease in the United States behind Alzheimer’s Disease and stroke. According to the Epilepsy Foundation its prevalence is greater than cerebral palsy, multiple sclerosis and Parkinson’s disease combined.

Before getting side-tracked with a slight challenge presented by the Building & Planning Department of our city, I was in the middle of an educational series about epilepsy which started with what it is and how to not be fearful of seizures (and even how to help if someone is having one).

There is so much to discuss about epilepsy but people first searching for help want to know about treatment options.

Robert falls into the 10% of those whose epilepsy cannot be controlled even with optimal medical management. Robert has probably tried every possible treatment available but continues to have several seizures a week (most likely several per day but many of the absence seizures go unnoticed). Robert has always been willing to try new medications or to participate in research studies in order to find a way to stop his seizures and to help others.

Like any medical challenge, treatment of epilepsy has evolved over the years and, with any luck, will continue to evolve until everyone is able to enjoy complete seizure control (hey, I can hope!).

Medications. Anti-seizure medications are by far the most common treatment for epilepsy. Between 70 – 80% of seizures can be controlled with medication alone. Robert has been on Tegretol, Phenobarbitol and Dilantin just to name a few. Robert currently takes a combination of Depakote, Clonazepam and Zonisamide six times per day. Ativan is also now prescribed to Robert but is only used if his seizures last longer than 5 minutes.

Robert tried a new medication two summers ago (known as Vimpat or Lacosomide) but it completely affected his balance and mental clarity and he landed in the hospital. It will take a lot to convince me to let him try any new medications again.

Medications come with their own risks and side-effects so it is imperative to discuss these risks with the neurologist. For instance, Robert’s medications affect his liver so he is on another medication to keep his liver enzymes from getting too out of whack.

Surgery. If medications do not successfully control seizures, surgery is an option to carefully consider. A few years after Robert was first diagnosed as a child, my parents were convinced if they took him to the best neurosurgeon in the world, he could be cured. It was a noble effort to be sure and after extensive research done by our Mom and lots of sweet-talking to the banks and creditors by our Dad, Robert was seen by a neurosurgeon in Switzerland. Much to the extreme disappoint of Mom especially, the doctor said Robert was not a candidate for surgery. However, many years later Robert did undergo surgery at UCSF but it did not help to control his seizures.

Robert loves to tell the story of one of his surgeries. It is fascinating to me to know he was kept somewhat awake so he could answer questions and review flashcards during the surgery. The brain mapping done before the surgery was extensive and the doctors were the best Robert could have had. Robert was a determined patient and takes great pride in the fact he was up and around after surgery much sooner than the surgeon expected. It just didn’t take away his seizures as we had hoped.

Surgery is certainly successful for some people, though, but carries with it its own risks and should be researched thoroughly and discussed extensively with the neurosurgeon.

Diet. The Ketogenic Diet is a high protein, low carb diet (sort of a stricter version of the Atkins diet). This diet should be carefully monitored by a dietician. The diet is generally used to treat children but there are current studies being done on adults to see if it can help control seizures in the adult population as well. The diet is started in the hospital and the patient is closely monitored. It appears to work to control seizures in children about 50% of the time. Only 10 – 15% of children become seizure free from diet alone but it is an option to consider. As far as I know, Robert didn’t try this treatment as a child (but it’s probably right up his alley since he loves meat!).

Vagus Nerve Stimulation. Think of this as a pacemaker for the brain. The device is implanted under the skin in the chest wall and there are electrodes leading into the brain. It is designed to send regular electrical pulses to the brain to help control seizures. Robert was in a research study for this for a few years and it actually helped control his seizures (not completely, but it did seem to help). Of course, he was still on all of his medications but it helped some. Unfortunately, when he underwent surgery to replace its battery, Robert developed a nasty infection that decided to stick around for months! The VNS was removed but the electrodes into the brain were left in because the doctors hoped the infection would get cleared up and Robert could continue using the VNS. It became clear the infection was spreading and was actually travelling up the electrodes which was extremely scary since this could have provided the infection a straight thoroughfare into his brain! Emergency surgery ensued and the electrodes were removed. It was an awful experience and Robert’s rapid decline in mental and physical abilities happened around the time of his infection.

Don’t be scared off this treatment by Robert’s experience. Even though it did not work out forever for Robert, it did help him for quite a while. This is a very effective treatment which should be considered as a treatment option.

There are a slew of treatments to consider when diagnosed with epilepsy and part of finding the best answer to seizure control is trial and error. It can be discouraging but working closely with the neurologist and keeping up on research will be the best possible path for success.

Have you or someone you know had surgery to control epilepsy? What medications have worked for you or your loved one? Are there any other treatments that have worked for you or someone you know?


Kim Dehlbom said...

Denise, if Robert has to go through life with Epilepsy, he certainly is lucky to have you for a big sister. I had no idea it was such a prevelant disease. You really don't hear much about it. Thank you for educating us.


Trish Hughes Kreis said...

Thanks for visiting, Kim. I learn so much every day from Robert and I love to pass along the lessons and information. Now, if I could just learn to play cards better. :-)