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.