The Mask of Epilepsy

I don’t like writing stories that don’t have an ending.  I hate it when I can’t be funny about something and it really drives me crazy when I can’t find the point in all of the things that need to be said.

The story of what Jacob is going through right now is intensely complex, is so hard to put into words, but needs to be told, even if I can’t finish it off with wrapping paper and a bow. Jacob is still having seizures, he deals with headaches, angry outbursts, hyperactivity, inability to focus, and struggles with social situations.  He has gotten to know the principal of the school really well and there have been many times that I have gone to my room and cried after a homework session because I didn’t know how to help Jacob get through his homework without one of us being angry at the other.  All of this is happening in the body of a 42 pound, six year old boy!

Back in November, all the professionals in our lives, teachers and doctors alike, collectively threw up their hands and said that they didn’t know what to do for Jacob anymore.  It was a very bad time for me.  I struggled through some pretty serious frustration, anger, tears, and this desperate need to do something for my son.

In January, Jacob was assessed by a team of psychologists and the story of that is here:        E is for Epilepsy: The Big Update.  They poked and prodded around in his mind and brain until they got some answers about what Jacob is struggling with right now.  We met with them in February and they gave us the rundown on what they saw.  I planned to wait to write that story until the final report came.  However, in the comedy of errors that is our life, the head of the team went on early maternity leave and she refuses to let any report go out without her signature, so here we are in April with no report.

The psychologists believe that Jacob has more than one neurological problem, of which epilepsy is one.  He is perfectly and adorably normal in many areas, but there are pieces of other learning disabilities and syndromes that he manifests, but not really enough of one of them to give a diagnosis.  The bottom line is that because epilepsy is the only diagnosis they don’t know what to do for him.

At the same time, his teacher and aide came to the same conclusion.  The third semester of school was so hard that I almost pulled him out of school.  A lot of the things that I know he needed couldn’t be implemented because the psychologists report wasn’t finished and therefore, the school didn’t have to change anything based on my word alone.

We did get a referral from the psychologists to go to a regional center who accepts children with epilepsy to see if we could qualify for a myriad of services including counseling, advocacy for school, training for me in handling a child with epilepsy, and many other things.  Hope for all of us seemed like it was finally becoming tangible.

Jacob and I met with the intake counselor at the regional center yesterday.  The meeting was one of the best I have ever had, and I’ve had dozens of these so far.  The counselor was kind, thoughtful, insightful, and understanding.  However, we probably don’t qualify because Jacob’s seizures aren’t frequent enough or severe enough to cause a serious impediment in his life.

So, the bottom line is, we really don’t know how to help Jacob.   The basic problem is that we aren’t sure that the problems he is having is a result of seizures/unusual activity in his brain or whether it is because he’s exhausted and cranky from the two medications he is on or if it is something else entirely.  We had to add a second medication because it seemed like the first wasn’t working as well as it should and Jacob started having a new kind of seizure.  Two medications together can create different side effects and it seems like Jacob has a lot of them.

There is no easy answer right now.

Even though this all seems overwhelming (it is) and frustrating (you betcha) there is a light at the end of the tunnel.  If the tunnel were 800 miles long.

A few weeks ago, Jacob’s neurologist, who I adore, got really upset with all of this and decided that she won’t rest until she unravels our little guy’s problems.  We are realizing that epilepsy and the medication is confusing the entire situation.  We don’t know how many seizures Jacob is having, how many spikes his brain has in a day, and if the medication he is on right now is doing what it needs to do.

So, in July, we are going to get a handle on all of that by checking Jacob into the hospital for three days and doing a continuous EEG, which will monitor his brain activity for 72 hours straight.  At the end of that time, we will know for sure how many seizures he is having and be able to adjust medications accordingly.  Once we lift the epilepsy mask, our hope is that we can figure out what else is going on with Jacob.

Every professional in our life, and me, agree that Jacob probably has ADHD as well as epilepsy.  So, if we can stop one of the epilepsy meds, the second of which we added because he started having a new kind of seizure, we can start him on some ADHD medication and stop his little brain from causing him so many problems.

Like I said at the beginning of this, there is no neat wrap up or tidy ending to this story.  It’s a marathon on top of another marathon, after which we will run yet another marathon.

But, there is hope.  There is always hope.  At the same time, there is reality.  The problem with hoping for better is that it often obscures today’s reality.  It makes me focus on how hard things are and how I want them to be different.  That isn’t necessarily bad, but I have to figure out how to hope for the future and act for the present.  I’ve started asking myself, “What can I do, right now, to help us do better?”  Sometimes, the answer to that question is that we keep plowing through homework.  Other times, we chuck it all and play basketball for a while until Jacob’s brain stops hurting him.

So, that’s it.  This is where we are are and what is coming up for us.

More to come!

 

 

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