The Things I Know

I am a fountain of knowledge.  I know all sorts of useless facts: like an elephant is the only animal with 4 knees.  Like the Etruscans, not the Romans, despite what Trivial Pursuit may think, invented the arch.  Like Dylan Thomas was Welsh.  Like West Syndrome is a devastating form of epilepsy in infants, also called Infantile Spasms, associated with a distinct EEG pattern (or rather lack thereof, since it is an overall disorganization of the EEG) called hypsarrythmia, myoclonic seizures, and delay or stalling of development.  I also know this means that in order to get the diagnosis of Infantile Spasms, hypsarrythmia has to be on the EEG.  If it's not, then it's not IS; it's infantile myoclonic epilepsy.   I also know that it's not just semantics.  Yes the seizures are the same, but the treatment is not.  You don't treat myoclonic epilepsy the same way you treat IS.  And if your child's doctor is worth his/her salt, they should also know the difference and shouldn't tell you it's the same thing.  I know that IS usually resolves itself by age 5, but that it often evolves into another form of epilepsy, often another condition called Lennox Gestaut Syndrome, which is equally devastating.  I know that epilepsy has no cure.  That if the seizures are resolved, the child is in remission, not cured.  The child still has epilepsy; it's just in remission.  Remission is good.  The longer it lasts the better the chances the remission is permanent.  But it is never a given.  Epilepsy never goes away.  Hard facts to know.  Especially when the child is your own.  I know that EEG technicians should never tell you what they see on the EEG.  They may have experience, but they do not have the medical training and resources to interpret what they see and draw conclusions.  That is not their job.  Their job is to run the test, not tell you what the test shows.  I know that hospital food really sucks.  I know that just because an EEG is clean, it does not mean that there are no seizures.  I know that just because an EEG is abnormal, it does not mean there are seizures.  I know a lot.

I also know that not everyone wants to hear what I know.  I know that I can come off like a know-it-all.  I know that the parents of an infant want to believe that no seizures means no more epilepsy.  I know that they want to believe the tech who tells them what they want to hear, whether positive or negative, when it contradicts the doctor, who is, like me, saying what they do not want to hear.

I don't want to alienate these people who do not want to hear what I know, but I feel compelled to share my knowledge anyway.  I always have.  But unlike in school, when I wanted to prove I knew more, I really just want to help these parents.

I want them know what I know because I have been where they are.  I have forced my infant to stay awake so that he will sleep during the EEG.  I have seen him hooked to EEG's.  I have seen the hypsarrythmia bleeping across that stupid screen.  I have shot my child full of ACTH.  I have seen him fight to learn to crawl and walk.  I have seen him seize uncontrollably every single day for years.  I have given him a myriad of medications to try and fight the seizures.  I have been handed sheets of paper from doctors with lovely words like "post infantile spasms intractable seizure disorder evolving to Lennox-Gestaut Syndrome" and "hypo tonic and ataxic cerebral palsy". 

And in a few years, they'll be where I am now, and they will want to share what they know too.  It helps keep us sane.