“You never forget the one you lose.”  That is what an old time postpartum nurse told me while taking care of a woman that just had a stillbirth. No matter how many other children, how many riches or blessings, the loss of a child leaves a hole in your heart that cannot be filled. My deepest condolences go out to the Travolta family.
Their son, Jett, recently died from a seizure disorder.  I do not wish to feed this media frenzy but hopefully provide a little education and some links with more information.
What is a seizure disorder?
A seizure is sudden abnormal brain activity. Up to 10% of people will have a seizure at some point in their lives, often caused by high fever. Only about 1-2 % will have epilepsy or recurrent seizures. Dying from a seizure is rare.
How do you die from a seizure?
About 20% of the time a person may have a fatal injury from falling after losing consciousness during a seizure. Drowning and suicides are also more common in epileptics.
When seizure disorder is put on a death certificate it means that the autopsy did not find any immediate cause of death such as heart attack or an injury to the brain. This is called SUDEP or Sudden Unexpected Death in Epileptic Patients.
How does SUDEP cause death?
I spoke with my colleague Dr. Dave Ficker, at University of Cincinnati who specializes in the treatment of seizures disorders and published papers on SUDEP. The experts are not certain, but they believe that either apnea (suddenly stop breathing) from the seizure or a cardiac arrhythmia  (abnormal heart rhythm) or both cause SUDEP.
Risk factors for SUDEP include uncontrolled seizures and other brain abnormality such as mental retardation or autism. We don’t know what medicine Jett was taking or if he had any other brain abnormalities.
How can you treat epilepsy?
Treating seizures can be a tricky as there are a dozen medications that treat seizures and it can be a lengthy process finding the right one at the right dose that works. Sometimes medications can make the seizures worse.  There are other options like surgery if medications don’t work. Ketogenic or high fat, high protein diets have also been used. Proper rest, healthy diet and stress reduction can decrease the risk of recurrent seizures. Nonconventional methods include aromatherapy and acupuncture.
The important thing I want people to know is how critical compliance is in taking any medication but especially seizure medication. If you have seizures then you should take your medication and frequently have blood levels checked. It may take a while to find one that works.  Sometimes one medication will stop working and another started but do not give up.
Never take yourself off any medicine without consulting your doctor.
You can find more information about seizures as well as local support groups by clicking here

Finally, I want to extend my heartfelt condolences to the Travolta family.
No one can begin to imagine what the family is going through.  I have found that support groups are one of the best ways to help in the grieving process. Compassionate Friends is a wonderful organization for parents as well as siblings who are often forgotten in the process. Individual therapy is also helpful but sometimes you need to talk to someone that has been through the same loss. Click here for Compassionate Friends

Give your children a kiss and tell them that you love them!

Dr. Deb