Most of our family members, friends, and new acquaintances really don't know much about epilepsy. We appreciate that others feel comfortable enough to ask us questions about his condition, and happily answer them to the best of our ability. However, I do feel especially alert and protective when asked certain things. Questions or comments that induce the Momma Bear in me may include:
"Your son is always unhappy, that's not normal."
"Have you had him assessed by a Psychiatrist?"
"Does your son have Autism?"
I am also often offered advice of how they would deal with misbehavior.
Now don't get me wrong, I am comfortable with these types of questions when I feel it's given with sincere concern. I will admit it could be possible there are other conditions contributing to his behavior, but none we know of with certainty. On the other hand, I'm not too happy when I feel these types of questions are posed with a judgmental and somewhat critical air.
How to tell the difference? Well, it's not simple. I have to stop my mind from reacting instinctively and do my best to give the person the benefit of the doubt. Sometimes it's not so easy to be generous in thinking the best of other's intentions.
In attempting to answer some of these questions myself, it only takes a glance at our son's seizure history and the amount of medication he is taking, and has taken in the past, to see it's amazing he's doing as well as he is. Wouldn't you be prone to mood swings and depression if you were that frequently sleep deprived or disoriented from seizures, and add onto that massive amounts of medication???
The topic of our son's behavior and cognitive abilities comes up frequently in our discussions with our Neurologist, and he has a word that completely sums up what our son is going through....Encephalopathy.
I turned to MedicineNet.com to describe what encephalopathy is and it's symptoms.
What is encephalopathy?
Encephalopathy is a term that means brain disease, damage or malfunction. Encephalopathy can present a very broad spectrum of symptoms that range from mild, such as some memory loss or subtle personality changes, to severe, such as dementia, seizures, coma, or death. In general, encephalopathy is manifested by an altered mental state that is sometimes accompanied by physical manifestations (for example, poor coordination of limb movements).
The term encephalopathy is very broad and in most cases, is preceded by various terms that describe the reason, cause, or special conditions of the patient that leads to brain malfunction.
The cause of encephalopathy in our son is clearly Epilepsy.
What are the symptoms of encephalopathy?
Despite the numerous and varied causes, at least one symptom in all cases is an altered mental state. The altered mental state may be subtle and develop slowly over years or be profoundly obvious and develop rapidly. Often, symptoms of altered mental status can present as inattentiveness, poor judgement, or poor coordination of movements.
Other symptoms that my occur include:lethargy, dementia, seizures...
Often the severity and type of symptoms are related to the severity and cause of the brain disease or damage
So to answer the questions mentioned at the beginning of this post, our son's behavior and mood is directed related to his epilepsy.