Night #7 (But Who's Counting?)

As I sit here on the eve of what I hope will be my last night (for awhile, anyway) of sleeping on a cot in a hospital room, I am overwhelmed to think about the twists and turns of this week and how God has been so faithful through it all.  Tonight is night #7 (but who's counting?) of having the privilege to keep my amazing son company while he faced the most difficult week of his life.  Our time together has ranged from laughing at silly TV shows and web videos when he was able to concentrate on them to watching him sleep, like tonight.  As this chapter draws to a close, it occurs to me that I am weary to my bones. 

It has been another difficult day. Beginning with a 5:30 am wake-up call, Chris was taken to surgery to deplant the depth electrodes.  Just as the last one was removed, he had a seizure.  This required more meds to calm his brain.  And, as I mentioned on the first surgery day a week ago - surgery is difficult and painful, no matter what body part it involves, right?  Vicodin and Morphine are the order of the day (night) right now.

In between twinges of pain, Chris is happy that this process was successful, and that Dr. Maleeva and Dr. Sutherling have lots of good information to review over the next few weeks.  He knows that so many people have been praying for him.  I have been sending out email updates nightly to more than 80 recipients who have been agreeing in prayer for Chris this week.  I plan to print out my emails and the replies to share with him.  I know he will be strengthened by their love, as I have been.

The next few weeks will involve just rest for Chris.  The doctor has instructed us that he can't lift anything more than 10 pounds, or run, or workout, or anything that may cause cranial pressure for about a month.  Keeping him home will be difficult once he feels better.  Ah, well - one day at a time...
He will meet with the surgeon to have stitches removed in a couple of weeks, then right before Thanksgiving we will meet with Dr. Sutherling to find out the surgery verdict.  He and his team will study the data for about two weeks, then have a committee meeting to discuss the case. 

There are still many things to cover in prayer: that Chris will fully recover physically and mentally from this procedure, that there will be no infection or complications of surgery, that his pain will subside quickly, and mostly, that the focal point location will be in an operable area of the brain. 

God has brought us this far.

Miracle on California Street

One of Chris' doctors came in today on her day off because she had been pondering something all night and had a theory to test.  She then hooked up a special transformer to a few of the electrodes and sent a slight electrical charge into Chris' brain through one of the depth electrodes and it immediately induced a seizure. Bingo! She was VERY happy - hooting & hollering, even - (she had expected no outcome) and believes the focal point of seizures can now be located.  They have decided that further monitoring will not be necessary, and Chris is scheduled for surgery at 7:00am Tuesday to remove the depth electrodes.

The doctors have told us that this is perhaps the most difficult case they have encountered, and were working very hard to find the focal point against all odds.   Most patients in this Phase 2 of brain mapping stay here two weeks or more; with one patient staying 48 days!  It is truly remarkable to have the data needed and for a patient to be able to go home in a week. 

As I left work today and drove to the hospital after hearing the news, I was filled with joy at God's gracious answer to our prayers.  So many of my friends have shared their hearts with me as they have prayed specifically for the doctors to be able to find the focal point.  The way the doctor located the focal point was so unconventional, it makes it all even more spectacular.

The next step is for the doctors to thoroughly review all the data collected for the brain mapping and a committee of 6 doctors will meet to discuss Chris' case and decide on the exact seizure origin. They will also determine whether it is in a part of the brain that can be surgically removed.  We will then be able to schedule that surgery, which will require a 3 to 6 month recovery.





Progress!

Slow. Seizures Ahead

We are seeing some improvement in Christopher's brain function - his speech is not quite as labored, but he still says it's hard to say the right words.  Typing an update on his facebook page or texting is very labor intensive, and he's very frustrated that reading is so difficult for him.  His sister and several of his cousins stopped by today and took lots of silly photos; that definitely served to lift him from the depression that enveloped him this morning.

One of his neurologists visited today and we were able to have a long Q & A session.  First of all, she made a point to note that what we are seeing in Chris in terms of his difficulties with speech and communication is definitely temporary, and due to the small amount of blood present with the swelling which is now beginning to subside.  She has seen people with much worse post-surgery symptoms fully recover.  Her main concern about the brain mapping is that she still cannot determine whether the focal point (the origin) of the seizures is in the left or right hemisphere of the brain.  The seizures propagate so quickly to other parts of his brain, that it is impossible to tell where they begin.  Chris needs to have a few seizures that begin slow enough to show exactly the origin, or they will have to do more drastic measures such as inducing almost a coma-like state (done by an anesthesiologist), to slow the brain activity down enough to show where the first spark of a seizure ignites.  If they do not clearly locate the focal point, Chris will not be a candidate for surgery to stop the seizures.

CT Scan showing 9 depth electrodes

I know without a doubt that God has brought Chris this far.  I am trusting Him for a miracle that the doctors will get the data they need.

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

"...all my days ordained for me were written in your book before one of them came to be."  Psalm 139:16

Sweet Sleep

One of the sweetest things a parent can experience is watching their child sleep.  When they are babies, we are fascinated by the gentle sweetness of their tiny breaths; when they are toddlers, we are amazed that they can be such holy terrors all day and look like angels as they sleep.  I'm learning that watching your adult child sleep holds much of the same mystery.  Sitting here, watching Chris sleep brings on so many flashbacks of his life.  The wonderful playgroup days, the mischievous Little League days and even the exciting high school football days.   This precious son that I love more than my own life is in a state of recovery from a surgery that may serve to ultimately give him the rest of his life back.  I try to remember that as I struggle with the present reality that my articulate son is now struggling to put his thoughts into words.  Every sentence is labored and sometimes abandoned because it's just too hard to speak right now.

The nursing staff here in the brain mapping unit are well above top-notch.  They are voracious in their commitment to advocate for their patients, and their compassion is immeasurable.  While each day brings uncertainty in the process, they continue to assure us that they have seen it all before and they are taking the necessary steps to make sure Chris comes through this process healthy and victorious.

At the insistence of the nurse today, the doctor ordered a CT scan.  It revealed a very small patch of blood that is the culprit in causing Chris's confusion.  It is not continuing to bleed, and will dissipate and be absorbed back into his body.  There is also some residual swelling that always happens with surgery.  He was given a steroid to control that and we hope to see improvement over the weekend.

The kind and loving words I am receiving from family and friends lift me up every day.  As I read the sweet responses to my email updates, I am so grateful to have so many who love and care for us. 

"Because of the Lord's great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness."
(Lamentations 3:22-23)

Here's to a new morning!

Your Prayers Lift Me Up

I don't have many words tonight except to say we are being held up by the prayers of family and friends.

After a relatively quiet night due to the fact that Chris was heavily sedated, today I got ready in the hospital room bathroom to spend the day at APU training for my new temporary job there.  Jim arrived at 7am and spent nearly 14 hours here with Chris.  We are two ships passing in the night right now.  Tomorrow I will get up and do it again, as my new employer has been kind enough to give me the days off needed over the next two weeks to have family visit for my brother's burial, which was planned long before this surgery was scheduled.

I am ready for my night shift of sleeping lightly so I can awaken if Chris has a seizure and help prevent him from reaching for his head in the midst of it.  He is still on pain meds, but in between naps is a bit more alert and responsive, even telling us what he remembers about going in to surgery.  Of course, his ever-present charm is coming out as well, and the nurses are just crazy about him.  The most difficult thing for us is to see our highly articulate son struggle to find the words for a simple sentence.  We are told this is temporary and a result of the combination of meds along with the natural slight swelling that occurs after surgery.  My earthly hope rests in that word ~ temporary ~ right now.

His nurse tonight told him she has seen so many patients helped by this surgery, and the end result is worth going through the hell he is enduring now.  So many of you have told me your specific prayer was for peace to wash over Chris at this time.  I am seeing that in him now - it's a tremendous difference from last night, when he was very agitated and trying to pull out IV's, etc.  Tonight his body is relaxed, hands are clasped together over his stomach, and he is sleeping peacefully.

Surgery Ain't No Picnic in the Park

It's 8:30 pm and Chris is finally still.  This is a good thing because the seizures have decreased for now.  I know you're thinking, "but he's in there to have seizures," but he was having them too soon after surgery, and he was having them just a few minutes apart.  He's had 20 seizures in the 6 hours they've been monitoring him.

Today was a pretty rough day for Chris - after what he described as "the worst night of my life" last night, his pain level this morning rocketed to a 10 out of 10 while he was having an MRI.  The MRI looked good, but he had to stay in ICU until about 1:30 so they could deal with the pain, nausea and vomiting that ensued.

After getting him hooked up to the EEG, the charge nurse was concerned that he was having seizures already.  After calls to the neurologist and 2 doses of Ativan, they pushed some extra Keppra into his IV to try and stop the seizures.  He is heavily medicated and pretty much unable to do anything but mumble a short word to the nurse when he's checked on.   Right now, his body needs to rest for a couple days.  Also, we want to avoid what's called "status epilepticus" where the brain can't stop seizing.  This gives them no information, and can be quite dangerous.  When Chris does have seizures, his brain needs to be at rest in between each one so the doctor can clearly see where the seizures begin.

Praying that he will sleep, sleep, sleep tonight with no seizures.  In a couple days I'll be praying that he will have seizures all night, with a bit of rest in between.

Life's funny that way, isn't it?

Stereotactic Implantation yada yada yada...

The reality of surgery is that you are never quite prepared for what it really looks like.  Or feels like.  The surgeon can tell you all he knows about how the procedure is done and how you will feel when you wake up, but really, until you experience it, you will never know.

I'm sitting in the ICU right now, watching my head-bandaged 20 year old son sleep.  His face bears a 5 o'clock shadow of whiskers, outright denying my motherly instinct that this is just my baby lying there.  This is my baby.  My big, 6 foot 4 inch, 240 pound baby of a young man who is insisting on moving forward with brain mapping in the hopes the doctor will find exactly where in his brain this pariah of a misfiring neuron lies, so that it can be removed. Forever.

Even with all the surgeries various members of our family have endured, I forgot to remember that surgery is surgery and there is inherent uncomfortable-ness that goes along with it.  If I could be lying in that bed instead of Chris, I would.  If I could take on the intensity of his post-surgery headache, I most certainly would.  But I must just watch.  And wait.  And trust God for his mercy.  And hope that the doctors are making all the right moves.

So here we are, in Phase 2 of the brain mapping process to determine whether Chris can have resection surgery to remove part of his brain.  Remove part of his brain.  Yeah, just let that sink in for a minute.

The order was for "stereotactic implantation of depth electrodes into the cerebrum."  Ten electrodes were planned for; only nine made the cut, so to speak.  The tenth incision gave the doctor too much trouble with bleeding at the incision site, so he nixed that one.  Better safe than sorry.  I like this guy.  The brain mapping part will commence after an overnight in the ICU and a follow-up MRI in the morning.  Chris will be bed-bound for about a week.  Meds will be reduced until he starts having seizures.  They need to see about 3 or 4 episodes where they can clearly determine the origin of the spark that ignites the storm.  The misfire.  The pariah. 

So it can be removed.

Brain Mapping 101

(NOTE: Forgive me, but I started this post on August 19th and never posted it. Well, then.... so much has happened since then.  BUT, just to help you get caught up, I'll post this one first, anyway....)

Well, here we are.  On the cusp of night #2 of the inpatient EEG.  Chris arrived at the hospital yesterday, which was mostly uneventful.  But going off Tegretol cold turkey was the plan, and as expected, the seizures began around 5am, as he slept.  During his awake hours today, very little happened but Chris has already told me to be prepared for a long night; he's feeling the storms in his brain going on constantly.

These simple partial episodes are just a warning of what's to come. The complex partials are on the way.  Hoping and praying for no tonic clonic tonight.  Those freak me out more than necessary.

We are here for Phase 1 of the Brain Mapping Program and for a safe medication switch, when the high dose of Tegretol will be exchanged for Trileptal in an attempt to keep side effects at a minimum.  Ultimately, the goal will be surgery to remove the seizing part of the brain.

The staff here talks about the miraculous results of seizure-free patients after surgery.  One PCA who has been in this department for nine years had goosebumps as she told us about the young people Chris's age who have been rescued from the grip of their seizures and now live life with no seizures and no meds.

(Footnote:  Chris stayed in the hospital for 6 days for this initial brain mapping, and had hundreds of seizures.  He had many visitors and could get out of bed and go as far as his "tail" of wires hooked to the EEG would allow.  A team of doctors met in September to discuss his case, and determined they could move on with Phase 2 of brain mapping, which involved implanting depth electrodes in his brain to find where the seizures originate.  It's a long process, but Chris is ready to move full speed ahead!)

The Depression Dilemma

"...feeling.... depressed .... worse than usual..." I had just picked up Chris from work and he was out of the car before me, grabbed a drink from the fridge we keep in the garage and heading in the door to the house.  What did he say, exactly? I couldn't be sure.

When I caught up to him, he was already sitting at the computer, checking to see if any life-altering messages came up on facebook in the past four hours.  "What did you say, honey?" I asked, "you're depressed?"  "Yeah. More than usual.  Just feeling really down today."

Deep breath.

I didn't really know what to do with that, other than to agree with him that he's got a lot to deal with right now.  And remember, the doctor said to let him know if the depression gets too bad, okay?  I mean, like a few days in a row.  "Yeah, okay.  Just wanted to tell you I feel different this week." For that I'm grateful.  He does tell me his feelings and frustrations, for the most part. 

Neither of us knows for sure what, exactly, the doctor would do; what that offer of help with his depression involves.  Probably prescribe another pill, poor kid.  He already has stopped taking the Strattera for his ADHD because he can't bear to add another pill to the regimen.  And since his hefty tonic clonic seizure last week, he's now taking double his regular dose of Keppra, 1000 mg a day instead of 500.  The nurse at the doctor's office has already "whewed" out loud at the massive dose of Tegretol XR he ingests - 1600 mg a day... and she works at the Epilepsy and Brain Mapping Program, for goodness' sake! You'd think this was nothing new to her.

But, the depression.  Another ugly word, one that no one likes to talk about or admit exists.  But my son's brain is sabotaging his life right now.  I'd be depressed, too, that's for sure.  Is it because things have taken a turn for the worse in the past several months?  The young man who studied in Europe a year ago and did very well, is now demoted to being driven to work and friends' houses by his MOTHER? Is it a side effect of the meds he takes? It's a major factor, I know.  Frankly, the increase in Keppra dosage scares the daylights out of me.  I have read many comments online from parents who nicknamed the drug "Kepprage" because of the severe mood swings and outbursts it induced.  I watch him closely for any signs that he has anger welling up, and I pray I never do something that might trigger a reaction and cause my teddy bear of a son to break into a rage he can't control.  I read again the long list of side effects:

• drowsiness
• weakness
• unsteady walking
• coordination problems
• headache
• pain
• forgetfulness
• anxiety
• agitation or hostility
• dizziness
• moodiness
• nervousness
• numbness, burning, or tingling in the hands or feet
• loss of appetite
• vomiting
• diarrhea
• constipation
• changes in skin color

Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

• depression
• hallucinating (hearing voices or seeing visions that do not exist)
• thoughts of killing yourself
• seizures that are worse or different than the seizures you had before
• fever, sore throat, and other signs of infection
• double vision
• itching
• rash
• swelling of the face
  
  
  Oh, boy.  He's already experienced almost half of the items on that list.  The line between being a mama bear and trying to protect my son and being a bird who wants to make him learn to fly so he can leave the nest is blurring right now.  Some days I'm the bear.  And some days I'm the bird.  God, help me to know what is the right thing to do.
  

Let the Brain Mapping Begin

After dutifully reporting the tonic clonic episode to Dr. Sutherling's office and being assured that the first EEG could not take place until August 2nd as planned, the phone call came that they had a cancellation and Chris could come in the next morning for an EEG.  Yes! Finally moving forward in the process which I hope will ultimately bring some relief to my son.

So, here we are, about halfway through today's test; I sit in the quiet room watching my son sleep.  The images on the computer screen defy the calmness of his body. The 30 or so squiggly lines each are mapping a specific section of my last-born's brain. At times they jump and sway, then return to a relative calm state.  About an hour and a half in, Chris had a small seizure.  As I got up to alert the technician, Chris opened his eyes and said, "It's okay, it was just a small one, mom," and fell back to sleep.  The tracing said otherwise.  As the screen filled with mountainous images of the storm going on in his brain, it occurred to me that perhaps there is no such thing as a small seizure.  They all are life-altering and ultimately life-threatening.

The technician has had to adjust and reattach the fragile electrodes on Chris's head at least 3 times already, each time carefully unwrapping and rewrapping the gauze bandage that is holding everything in place.  Chris gives himself a buzz cut every 3 weeks or so; I wonder how they accomplish this on people with lots of hair.  I do so appreciate the careful and caring attention patients receive here.  It is evident at every turn: the gentle treatment from the office staff to the smiles and greetings we receive when encountering the doctor in the hallway.  The bulletin board with letters and pictures of patients whose lives have been changed by the people in this place give me a sense of resolve, even peace.  We are in the right place.

Tonic + Clonic / Grand + Mal = Mom With a Broken Heart

My first thought when I opened my eyes to the sound of intense sobbing coming from Chris's room, was "poor guy, he's really broken up about that talk with his girlfriend last night."  It was gutteral, inconsolable.  Then I thought I'd better make myself available to comfort and pray with him.  Expecting to see him crying into his pillow or even having a very bad, very vocal dream, I opened the door to see my big, strong son reduced to a convulsing mass lying across the bed.  He was fully engulfed in a seizure, the tonic clonic episode straining every inch of his body.  Every muscle tensed, his pillows were already wet with the sweat that was pouring off his body.  Teeth were clenched, saliva foamed from his mouth.  Eyes open, but nobody's home.  His body wracked with the convulsions produced by the electrical storm going on in his brain.  I had never seen a tonic clonic, or grand mal, seizure before.  I tried to remember what my response should be.  He was already on his side and I was grateful for the safety of his bed.  The convulsing had been going on for at least two minutes already, surely it would end soon.  It didn't.  I yelled to the next room to wake up my husband and get him in here in case Chris needed help.  He rushed in and told me to get a camera to video this for the doctor.  By the time I returned the convulsing was slowing and Chris was transitioning to a state of heavy breathing, and eventually into postictal sleep.  When he awoke, he was greeted by the faces of two very stunned parents, telling him he'd just had a seizure.  "Oh, I did?" he said, and drifted off to sleep again.  And so began the 4th of July, 2011.

Those of you Epilepsy Moms who live with this horror daily, bear with me while this newbie freaks out just a bit.  Not even close to what a simple partial or complex partial seizure looks like, this was by far the most terrible thing I've ever seen. Worse than seeing my daughter's humerus bone snapped in two.  Worse, even, than seeing my mother take her last breath on this earth.  The sight of my beloved son completely under the control of a seizure's terrible force is life altering.  I will never be quite the same.  And neither will he.

That was yesterday morning, but it seems like a week ago or so.  The tears still well up at the most inopportune times, like when I'm driving to pick up a few groceries or the dry cleaning, or folding the laundry, or feeding the dog.  I'm a very visual person.  When I close my eyes, I can still see disturbing images from movies I watched ten years ago.  But this wasn't a movie.  I suspect I will see this seizure replayed in my mind for many years to come.

My resolve to help Chris find a way out is solidified.

Locked in a Conundrum

I'm still trying to digest all that the doctor said.  I'm still trying to digest all that my son told him.  This is bigger than I knew.  Much. Bigger.  What I do know is I have a folder dedicated to all the appointments for tests that must be done in the next few weeks: MRI, Blood Test, EKG, 2 EEG's - and THEN we will meet up with Dr. Sutherling again and talk.  Six weeks.  Seems like a lifetime when you want your son to be able to get on with his life.

Did you know seizures could change and migrate over time? I did not know that.  I find myself longing for the time when "Partial Motor" was the order of the day, and we could just call it an eye twitch. What Chris has described as an occasional warning to the onset of a seizure (sort of like an aura), the doctor is calling "Simple Partial," which then moves on to a "Complex Partial" involving his entire body, but does not render him unconscious.    Chris describes it as his mind is racing and he is desperately trying to calm himself to make it stop.  Of course, he can't make it stop.  But he tried.  In typical teenage fashion, he tried.

We discovered the backpack with his pipe and small stash of medical marijuana a few weeks ago, and of course, destroyed it immediately.  The appointment with the new specialist had already been made.  It seems we were all searching for a solution to a problem that appeared to be getting out of control.  What was once under very stable control by the combination of 1600 mg of Tegretol XR and 500 mg of Keppra daily, had now morphed into a scary, constant state of uncertainty for our son.  He tried to hide it.  He finished his semester of college, but with a D- in two classes and a very gracious C from his teacher in the other.   He was still driving, except on the days when his med side effects were too much to handle.  But we noticed.  Parents see these things, you know.  It breaks my heart to even say this, but his eyes were dying.  Not dead just yet, but dying.  Once he moved home from school, it was even more evident.  And we all knew something must be done.

According to Chris, he came across some information on medicinal use of marijuana for epilepsy on a website called "Stumble Upon," while studying abroad in London last fall (where he earned a 3.2 gpa, I might add).  He did some research.  He talked to people.  He Googled.  He tried it, making sure to obtain a Sativa strain that specifically helps with calming the nervous system.  He felt relief, and argues still that it helped him.  But the seizures did not stop completely like he'd hoped.  The moments of despair and sadness still crept up on him.  And the times he felt the calmest and most in control, we would describe as somewhat out of it and basically stoned.

He had put a band-aid on his broken brain, and it wasn't going to be enough.  We are hoping beyond hope this new doctor has a livable solution.

A New Day ~ A New Doctor

It's midnight. Officially, today is the day we've been anxiously dreading for weeks. Or is it hopefully anticipating for weeks? I forget.  A new doctor.  The first new doctor since Chris was diagnosed 8 years ago.  Eight years.  That's not very long, yet sometimes it seems like he has been having seizures his whole life.  But no, for the first 12 years he was the bright-eyed, agile, active son we always knew he would be.  And then something changed in his brain.  They began slowly and mildly at first, and gained strength and impact as Chris grew.   The drugs are the worst part, and sometimes I argue with myself that it might even be better to have seizures now and then rather than deal with the debilitating side effects.  But what do I know? I'm not in his brain.  I only know what I read through my research, and the one thing that is common to all stories is that every single person is different.  Different in how the seizures occur, different in how the drugs react in their system, just different. Always different.

It's not like he's incapacitated or anything.  He is bright, friendly, has a bazillion friends, and works at a local supermarket.  He played football, baseball, and was on the track team in high school.  All without anyone knowing his secret.  That ugly word secret: I have epilepsy. 

Seizures are described as "an electrical storm in the brain" and like any storm in nature, there is some collateral damage.   The eyes that once were endlessly bright are now clouded over much of the time.  The fine motor skills that showed such promise in a 5th grader's neat printing now produce handwriting that is mistaken for a six year old's.  Days are missed from school or work due to the side effects of anti-seizure medication.  Chris laments that every time he has a significant seizure episode, he feels like part of his brain has died and he feels like he's getting stupid.  This is not good news, for through it all my son has fought to get grades good enough to graduate from high school and attend a prominent university.  But lately, his struggle is becoming overwhelming.  Energy he should be expending on other life activities such as school and work, is spent just recovering and being uncomfortable.  He is exhausted all the time, and sleeps much of the day.  Last week he woke up one morning and announced he was quite sure he'd had two or three intense seizures in the night.  By 4:00 p.m. he still couldn't get out of bed and called in sick to work.

This is why we are seeing a new doctor.   The Epilepsy and Brain Mapping Program says their goal is to provide treatment with little or no side effects.  When surgery is deemed necessary, they have an 83% success rate, something I've never heard a doctor say before.  We are trying our best not to pin all our hopes on this new possibility, but it is difficult.  I am afraid they will say surgery is a very good option to pursue.  I am afraid they will say it is not.  I am afraid they will say there is nothing that can be done.  Afraid, maybe. A bit unnerved, yes.  It comes and it goes.  But through it all, I will trust God for the outcome and that He holds every detail of my son's life in His hands.

It just may take me a little time to learn how to exhale.

My son doesn't have Epilepsy, he has a Seizure Disorder

Epilepsy.  Such an ugly word.  I'm a bit ashamed to admit I haven't looked up the origins of the word, which is odd for me since I am somewhat a collector of words.  And, I'll admit I haven't researched much into the generalities of the affliction.  I don't yet know all the different types of seizures, or exactly what is being done in terms of research.  But I have a son.  An amazing, handsome, loving, compassionate, big and tall young man of a son who was diagnosed with Partial Motor Seizures when he was 12.  Two years later he was labeled with Learning Disabilities and ADHD.  The world hasn't been the same since.

Because his seizures came in the form of a twitching around the eye, it took us a full year and two neurologists to get a diagnosis.  Even with an EEG, the first doctor said he was having muscle spasms and wanted to put him on muscle relaxors as treatment.  Um.... that would be a NO.  You are not going to put my athletic, active, Little League ball player on any drugs that will turn him into a noodle.  Months went by, and the "eye twitches" began to be more frequent, maybe 20 a day, and began to engage his arms and legs.  Describing the feeling as "like having opposing magnets attached to my hands and feet," my popular son gradually began to withdraw and spend time only with his very closest friends who had witnessed the twitching and could help him hide it.  Time for doctor #2, who did an EEG immediately, followed by an MRI and proclaimed he was shocked the first doctor had missed "that line right there" on the EEG which clearly indicated seizure activity on the brain.  Partial Motor Seizures.  Finally, a name.

And with a name came an obsession for mom: research.  That night I spent hours at the computer.  Google became my new best friend: Partial Motor Seizures.  Jacksonian Epilepsy. Wait, what? There's that word.  The ugly one.  Epilepsy.  I didn't know anyone with epilepsy, and my only exposure to someone having a seizure was in high school when a girl in my grade had a grand mal during a film in class.  The whole school knew about it within minutes.  I never heard whether this was an isolated incident or if she indeed was diagnosed with epilepsy.  She was probably the nicest girl in the whole school, but the damage to her reputation was done.  How could my son have epilepsy?

As it turns out, we don't know.  The MRI was inconclusive, and aside from a playground concussion in kindergarten, there seemed to be no reason for this to be happening.  I now know that most people with seizures never learn the cause.  And yet, there's something in the human spirit that just needs to blame something in the universe for whatever ails us.  As in, everything gives you cancer.  But what gives you epilepsy?