E is for Epilepsy: The Big Update

I realized recently that I have been doing a bad job of updating people on recent events with Jake.  I am going to let myself off the hook since the last few months have been completely bonkers with concerts, finals, writing a paper for the first time in 15 years (I got an A!), Christmas, traveling, and trying to survive all of that with a few brain cells left intact.

Last week, Jacob went to visit the Pediatric NeuroPsychology department of Sutter Children’s Center in Sacramento.   People who know us well and follow me on Facebook or Instagram have seen some of our journey and have been asking questions.  Instead of trying to write it all out in essay form, I am going to do a pretend Q and A with myself and hopefully, some of the questions you would ask, or have asked me, will be answered.

Why is Jacob being tested by a psychologist?

Good question.  You are so smart!  We have been seeing some behaviors that add up to there being a global neurolgoical problem with Jacob.  He has a hard time concentrating, a difficult time starting tasks, his attention is short, his memory recall is not very good, and he has  a very hard time verbalizing his ideas in a way that is understandable.  He also has a hard time controlling himself and when he gets frustrated, will frequently use his body to express his feelings and anger.

What is the psychologist looking for?

One of the main jobs that a psychologist has is to go in with no preconceived notions.  They basically poke around inside someone’s mind, collect data, and then look at the data to see if it all adds up to something global.  They are very thorough.  I had to fill out twelve different questionnaires and his teacher filled out six.  Jacob was referred to the psychologist by the neurologist who oversees his epilepsy for possible ADHD. This doesn’t mean that Jacob has ADHD, but to get Jacob referred, the neurologist had to put something down on the piece of paper that gets a patient approved for testing.

Is the epilepsy related to the problems Jacob is having?

There is no easy answer for that question.  Once a child has epilepsy, which is a disorder in the neurological system, they are far more likely to develop other neurological problems.  Jacob isn’t having problems because he has epilepsy.  It is more a case of Jacob probably has an overarching neurological problem of which epilepsy is a part.  Or, they may be completely unrelated.  The tough thing about all of this is that neurological disorders don’t show up like a broken bone on an x-ray.  There is highly, highly educated guesswork and we have do the best with what we have.

Is Jacob’s epilepsy cured?

Nope.  He still has epilepsy.  Just because a child is seizure free, which Jacob sadly is not, it doesn’t mean that they no longer have epilepsy.  Jacob has been on medication for a little over a year and continues to have seizures and abnormal EEGs.  An EEG is the test where they put electrodes all over Jacob’s head and test his brain activity.

But, I have never seen Jacob have a seizure!

Actually, you may have seen one and not known what you were looking at.  Jacob has only had one grand mal seizure.  Grand mal seizures are the ones that everyone knows and the kind that people have in the movies.  They fall down and shake and lose consciousness.  There are many other types of seizures that don’t look like that at all.  Jacob’s kind is absence seizures.  They usually look like the person is spacing out.   They will stop moving, their eyes kind of glaze over, usually they stop blinking, and sometimes, will do a repetitive motion, such as rubbing their fingers together.  Jacob still has those maybe once every few weeks.  They increase when his stress level increases, so he has more at school or when there is a lot of stimulation.  For example, I saw him have on in the lunchroom where it was very noisy and a lot was going on.

Wow!  Are there things he can’t do because of his epilepsy?

Kind of.  I am forced to be a helicopter parent.  I need to watch him all the stinking time when he is doing an activity that could be dangerous if he had a seizure.  I have to play with him at the park.  Not just near him, but close enough to catch him if he fell.  He can’t take a bath by himself.  He still doesn’t know how swim and many swimming teachers don’t have good enough insurance to be able to take him on.  If we are in a pool, I have to have one hand on him all the time.  Obviously!  If he has a fever, I have to manage it very carefully.  If his fever gets higher than 101, it could spark more seizures, so I need to take his temperature every two hours, around the clock, and keep that Tylenol flowing.  Other than that, which isn’t as bad as it sounds, Jacob can function normally.  There are some bridges we will cross later in life, like living on his own and driving, but there is an 80% chance he will outgrow this and will live a normal life.

I had no idea.

Yeah.  Sorry.  This kind of stinks.

So…  Oh, yeah!  How did the testing go?

Jake was an absolute champ.  The day of was pretty tough.  My friend, Robbi, drove us and apparently, when she and I get in a car together, strange things happen.  The last time she drove us to an appointment, I threw up 8 times from a migraine.  It was the greatest.  This time, it was raining cats and dogs and monkeys and we were almost 40 minutes late to the appointment.   Once they got started, he did great.

Where you with him the whole time?

No.  I couldn’t be in the same room with him.  However, Robbi and I could stay in a room next to his and we had a one way window and a speaker, so we could hear and see everything that was going on.  This is what we saw for most of the morning:

psych3

 

How long was the testing?

He needs to complete a total of about 8 hours, which no human being was going to be able to get through in one day.  I had to do an intake appointment and it was four hours.  I had to take a nap when I got home.  He did four hours and will go back on January 29th for the rest of it.

How did he do?

He did really, really well.  He had bad moments and emotional meltdowns, but they needed to see those.  Part of what they are looking for is coping mechanisms and how long it takes him to come back from being upset. He took Clifford with him and was able to use him for comfort and to make the test a little more fun.  After a while, Clifford had to come with me so that the psychologist could see how he did on his own.  I let Clifford watch the test.

psych2

 

After the testing was over, he was wiped out.  We went out to lunch and for the first time in 4 years, he fell asleep on my lap.  Even though I wasn’t happy with why he was so tired, I loved being able to cuddle him for more than 2.5 seconds, which is our average of how long Jake holds still long enough for a hug.

psych1

When do you find out the results?

We go back on February 12th to find out what they recommend.  It could be anything from ADD/ADHD to more ambiguous findings which could result in trying to find ways for Jacob to cope with what is happening inside his brain.

How are you doing with all of this?  

Uuuuuuummmm…  “I don’t know” is about as honest an answer as I can give right now.  This will turn into a longer blog post at some point, but the short answer is that I am doing okay.  It’s hard to watch Jake struggle.  It’s hard to know that I am at the limit of what I can do for him.  I want to fix it and I can’t.  I struggle with (totally irrational) guilt and wonder what I could have done better.  (There is nothing I could have done better.)  I have my bad moments where I cry and am scared for  his future.  But, then I remember that God has used all the nasty stuff I’ve been through to refine me and make me better and I have hope that He will do the same for Jacob.

What is next for you guys?

We hang in there.  We keep going and loving life and having fun and going to the park and the doctor and watching Star Wars and Jake dresses up as Darth Vader and we try to be as normal as we possibly can, which in this family is not all that normal.  We pray and we lean on God and each other and we make it through whatever is coming.  Pretty much, we keep calm and carry on.

What do you need right now?

Prayers, wine, chocolate, and books.  There is very little in life that can’t be fixed by that list.

Those are as many questions as I can remember being asked.  Please feel free to send more my way.  I am open to talking about it and happy to answer questions.  Chances are everyone knows someone with epilepsy.  I have found that epilepsy is very misunderstood and if I can help demystify it, I will be a very happy girl.

This may sound like a really hard thing to go through right now and it is, but it is part of who we are.  And I really like who we are right now.

thisisus

 

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6 Responses to E is for Epilepsy: The Big Update

  1. cheekypinky says:

    I love the way you structured this as a Q&A! Well done friend, in your own life, and in Jake’s.

  2. Janet Wagner says:

    Thank you for putting most of what you have already covered on your Facebook page into one article. I’ve said it before, you state, rant, and face and then always come to a most excellent conclusion about the whole situation and how God is using this. Praying for you all!!

    • Thank you! I think I include all of that so that everything feels less packaged up, even though the end result is sort of that. I want people to realize that there has to be a process that ends in God using all of this. Life hurts and stinks and stings along the way. As you well know. 🙂

  3. Pingback: E is for Epilepsy: Adjusting Her Sails | Back Porch Swing

  4. Pingback: The Mask of Epilepsy | Back Porch Swing

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