Staged at the Mayo Clinic in Scottsdale, Arizona was the seminar "Beating the Odds: Practical Advice for Life with Epilepsy". It started at 7:30 a.m. with a continental breakfast. I joined Jennie in this endeavor, because I had never gone to one before and neither had she. I had gone to one informational meeting at church, but it was very vague.

 

The first topic of the morning was about depression and memory.  Though a problem in the general populace, it is found a bit more often in people with Epilepsy because of the medications and the underlying reason/s for epilepsy.  Dr. Jennifer Borton had two coping methods for stress (which leads to depression):

    1) Approach the problem- for long-term stressors [mother-in-law coming to live]   

    2) Avoid the problem- for short-term stressors [mother-in-law coming for                  Thanksgiving weekend].

Dr. Borton also said there are three stages of processing where are problem can arise for memory.  They are:

    1) Encoding- where one's attention must be active and focused

    2) Storage- generally in the temporal lobes (hippocampus) where are great majority of the epileptic seizures start

    3) Retrieval

Things that can impede memory are the medications a person takes (especially for seizure disorders), bad nutrition, sleep disorders and emotional distress.

For more information on memory Dr. Borton suggests reading books by a Dr. Barkley or by going to www.MayoClinic.com and searching for "memory".

 

The second topic was presented by Dr. Yu-tze Ng from the Barrow Neurological Institute in Phoenix.  He spoke about children and seizures; how much freedoms one should give to them (among other points).  Basically he spoke more of treatment than quality of life issues for children.  Of the 65% of seizures thought to be of unknown origin (idiopathic) research has pegged about 1/2 of those as having a genetic basis.  He is confident the other half will eventually be found to be inherited, also.  Dr. Ng also stated that he thought medications are not currently prescribed correctly.  He believes in monotherapy (using one drug to its fullest capacity) instead of multiple drug use.  For children, he specifically stated that he thought the Ketogenic diet is underutilized.  He agrees it is a difficult regimen [like Atkins to the 100th degree] especially in a school setting, but it has been proven to help immensely in childhood.

 

The third topic {and we were already really running behind schedule by now} was about quality of life issues, presented by Dr. Richard Zimmerman of the Scottsdale Mayo Clinic.  He is a surgeon, so one can already tell where his emphasis was.  In any case, he spoke about the side effects and usefulness of both drugs and different types of surgery.  The gist is: if a person is not controlled on the first drug they ever try, chances are greater that each new medication will be ineffective.  This causes a quality of life that is less than desirable, with chance of death due to seizure (either the seizure itself, or where or what someone is doing at the time of the seizure) going up.  Dr. Zimmerman spoke briefly about the different types of tests one should take to make sure the correct diagnosis is a seizure disorder.  Among those tests, especially useful to a surgeon, is the newly developed SISCOM which "marries" the MRI to a SPECT scan.  He showed slides of a brain tested with SISCOM and explained the difference between the results...and then showed the portion of the brain that would be surgically removed to alleviate seizure activity.  He also showed a short clip of a woman having brain surgery while being awake.  He said the brain has no nerve cells for pain, so after getting through the scalp and skull, they can wake the patient and stimulate the brain to make sure no important function would be lost with surgery.

 

Now it was time for a break...thank goodness....we were well off schedule now, and the seats were less than comfortable (especially for me with my hip bursitis).

 

The fourth topic was given by Dr. Joseph Drazkowski from the Mayo Clinic (who Jennie will be trying as her epileptologist in December) on DRIVING with epilepsy.  Well, you know that is a HUGE quality of life issue in many places outside of New York City or Toronto, Canada!  Dr. Drazkowski said that statistics show in an average year, 1 to 2 per 1000 vehicular deaths are due to someone having a seizure at the wheel.  On the other hand, 7% of crashes and 35% of deaths are due to alcohol-related incidents.  For the female populace in the audience (which was quite a bit higher than males) more ammo was given:

    Accident rates for women with epilepsy < teenage boys. [OUCH!]

Medications for seizure control was the fifth topic presented by Dr. David Labiner.  He stated the only difference between the "old" drugs (Phenobarbital, Valproic Acid, Valium) and the "new" drugs (developed since 1978: Lamotrigene, Keppra, Topamax) is the side effects.  Dr. Labiner said no one medication has been found to be statistically better than another, and it is up to the doctor and patient to decide what works for them as an individual.  Almost all anti-epileptic drugs (AED's) have the tendency to deplete the body of  calcium, so a calcium supplement of 500 mg twice daily is recommended for people on AED's.  Another important vitamin for these patients is Folic Acid.  It is especially important for women considering becoming pregnant (as is Vitamin K).  Lamictal and Topomax are the only two drugs currently thought to be safe for a woman to take during pregnancy, as the incidence of birth defects doesn't seem to increase.

The next speaker was Dr. Victor Salazar whose topic was on the causes and problems associated with epilepsy in the Hispanic population.  Awful as it may seem, the number one cause of seizure disorder in the Hispanic community (not just Mexicans) is Neurocistercercosis, a parasitic infection which travels to the temporal lobe in the brain and lives and grows there (can I say, "EW"?!)*Photos of brains with the parasite*   Other causes of seizure disorders are pure prenatal care and high incidence of strokes.  In this country there are barriers to Hispanics getting treatment, being:

    1) Language barriers: even on the internet, there is little in Spanish on epilepsy, though www.efa.org has started a section for Hispanics

    2) Cultural barriers: "God has brought this upon them"

    3) Economic barriers: very few in the Hispanic community have health insurance, and many of the treatments are too expensive for them.

 

The eighth topic (no...I didn't miss one, things were shifted, because the doctors were having their own seminar...and since we were now 1 hour behind schedule...) was about alternative treatments for epilepsy given by Dr. Joseph Sirven from the Mayo Clinic in Scottsdale.  He mentioned that people use herbals of many varieties with the "perception" they had fewer seizures.  Dr. Sirven is not against using alternative medicine, though he says it should be an adjunct therapy.  Two of the least helpful and possibly harmful adjunct therapies he mentioned were neurochiropractics and the use of Ephedra. With neurochiropractics, he is a witness for the prosecution in a case in Pennsylvania where a 19 year old female dropped the use of her medicine for this therapy (at the behest of her boyfriend) and went into status epilepticus (a seizure which does not stop).  The neurochiropractor worked on her for 5 hours, before she died!  Any medical personnel should know that after 5 minutes (not hours) medical/chemical intervention is required.  As for Ephedra, people have been known to get brain hemorrhages from its use.  In filling out forms about alternative treatments, in a blank section, several people wrote they got a hemorrhage from the use of Ephedra.  The "therapies" Dr. Sirven finds helpful in addition to medication are all stress-reducers, such as prayer, yoga, meditation.

The final topic is probably the one Jennie was most interested in at this point in her life.  Dr. Greg Cascino from the Mayo Clinic in Rochester, NY spoke about the risks associated with women with a seizure disorder having children.  In the normal population, 2-3% of pregnancies result in children with birth defects.  In women with epilepsy (WWE), that number changes to 4-6%.  The most common birth defects from WWE are facial clefts, extra finger/toe, club foot and heart abnormalities.  Women who choose to use birth control (hormonal) have to determine if their AED is one which affects the level of hormones.  Those that have been shown to have no discernible effect on birth control are Valproic Acid, Lamotrogine, Gabapentin, and Levetiracetam.  On the other hand, different hormones affect seizures in differing ways.  For example, and increase in Estrogen has been shown to be pro-convulsant and Progesterone has been shown to lessen seizures.  Dr. Cascino suggests that any woman thinking of becoming pregant (especially WWE) to increase their intake of Folic Acid to .36 - 5 mg daily.  In the last month of pregnancy, he suggests a WWE take 10 mg of Vitamin K for possible bleeding problems with mother or child.  This is considered a "high risk" pregnancy and should be closely monitored.  Dr. Cascino also requests that any WWE become part of the AED Pregnancy Registry which is run by Harvard Medical School through the Massachusetts General Hospital.  [call (888)233-2334 for more information].  Finally, he said there has been no problems associated with WWE on AEDs breastfeeding their babies, though the baby may be sleepier than normal.