Say What?

Tuesday was a pretty normal day.  For once, I was actually home to go back and teach Drama Club ... we did the normal drop offs and pick ups from carpools ... and everything else seemed in order.  Imagine my surprise when the phone rang at almost 5pm... and when I looked at the caller ID, I saw "Child Neurology."  My first thought was "Oh no! Did I miss an appointment?" ... we've had so many lately .. and with 2 phones now having failed on me, my up to date calendar wasn't so up to date. 

I answered the phone call and the Nurse on the phone asked for Meagan's parent... I replied "Yes, this is her mom" ... she then said "We have Meagan's EEG results.  It showed seizure activity and so Dr. Zurbrugg would like to see you to discuss the readings and talk about medications."  Pause. I felt like I was in a twilight zone.  Excuse me? Didn't we just put this to rest a few weeks ago? The Nurse then continued.. "He would really like to squeeze you all in tomorrow if you can come."  I snapped back to reality - and of course.. .the only opening was right when I normally teach.  Of course Meagan is more important than anything, so there was no hesitation to cancel my students and get Meagan in to see the Neuro .. but I had already cancelled students the week before Thanksgiving, so I just felt badly.  I told the Nurse I would take the appointment and hung up rather confused, relieved, upset, and anxious all at once.  How could they have missed this? The last thing I was told was that everything seemed to be ok.  I was confused as to why we hadn't been called ... relieved because I knew all along seizures were the culprit .... upset because Meagan had now gone 2 more weeks suffering through her episodes ... and anxious to get into the appointment and talk about the next step.

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Fast forward to the next morning, Wednesday (today) - it couldn't have come fast enough..  The one good thing about me originally having to teach was that I already had a sitter lined up - once she came, I left and Brian met me at the Neuro office.  We checked in and waited to see the doctor.

Now, Meagan had been seen by this practice when she was still in the NICU.  The two doctors that saw her seemed nice, but, I hadn't really built a 'repor' with them at all.  The NICU staff told us to go ahead and make a follow up appointment with the Neuro practice so after she was discharged, she was already "grandfathered" in to the practice.. otherwise, the wait would be VERY long as the Neuro practices are often very busy and overbooked.  I'm so glad we did this now in hindsight, or else we may have been waiting a lot longer to get in to see a Neuro at all. 

There was one new doctor to the practice - he had come out of retirement to practice again, and because the other Neuros were so overloaded with patients, Meagan was assigned to this "new" doctor.  However, when she started having seizure-like activity a few weeks ago that seemed to increase, they wanted to get her in for an EEG, so we got put with another doctor temporarily.  While I'm grateful this other doctor got her in for the EEG, and then admitted her for the 2 day EEG, I'm more grateful that Meagan stayed on the roster of her original Neuro ...the one we ended up seeing ....  because he is the one who decided to actually go back and read her EEG tracings and reports... which is what ended up leading to the phone call we received Tuesday night.

We finally got back to the exam room... the Neuro seemed like a nice guy.  I got a good "sense" from him as soon as we entered the room.  He looked about my dad's age .. and kind of looked like him too.. right down to the New Balance running shoes. Dr. Zurbrugg introduced himself and then met Meagan for the first time.  "Is this your little bunny?" he said.  Little Bunny. Hilarious. But I liked it. "Yes" we said.  Dr. Z then continued to talk to us about her results.  When I asked why we hadn't been talked to sooner, he said he didnt' know ... he was relatively new to the practice and didn't know why we hadn't been notified about the EEG reports.  He said he had read them yesterday, and that's why he called us to come in. 

Before Dr. Z started to get into Meagan's EEG results, he reached over to his desk and handed Brian a pen.  Now, we have a binder that has all Meagan's information since I was 20 weeks pregnant ... and we always write everything down... but it was so nice to see the doctor initiating the offer to record the information he was about to share with us.  My good sense about him was confirmed. 

Once we were ready to write, he continued ... he said Meagan's EEGs (both the 48 minute in-office and 2 day in-hospital tracings) showed seizure activity.  Dr. Z told us it was mostly coming from her left side, (which made sense to me because her left ventricle had been the largest, and, I see most of the shaking and convulsions in the right side of her body) ... but Dr. Z went on to say there was also a little activity from her right side.  He said it seemed to be originating from her temporal lobe.  This makes total sense because this is where we process emotion and reaction... and often these seizures start with a sudden sense of fear or a tensing of the abdomen.  This describes exactly how Meagan's seizures start.  She will suddenly wimper, cry, or scream out - as if afraid, in pain, or shocked... then the shaking in her right arms starts, then both arms, head, and legs.  Then as quickly as it starts, she will suddenly put her head back, her eyes will roll, and she will pass out asleep.

WIth the help of the video monitored EEG, they could finally see these seizures morph into her head, hands, arms, and sometimes legs.  Based on the video images coupled with the EEG tracings, Meagan was diagnosed with multifocal tonic clonic seizures. I know sometimes Meagan stiffens her legs, but, I was a little confused by this term because Meagan doesn't have the typical "as seen on TV" seizures.  Tonic/clonic are more like "grand mal" .. or the "all over" seizure.  Hers seem more "calm"....but...what do I know.  Perhaps I don't fully understand the terms he was talking about.    Dr. Z said his main goal would be to minimize or eliminate her clinical seizures so she could be comfortable and also get them under control so her development could continue to progress.  He said that seizures often beget seizures.  In his opinion, there was not an option to leave them untreated, especially with how hers seemed to cluster at times.

We knew the medication talk was coming next.  We had received a lot of input on meds from several other families we talk to.  Some kids responded well to the tried and true Phenobarb... while some had reactions to it and ended up being endlessly tired and sedated.  Some kids responded well to Keppra, a newer drug which didn't have the sedative quality of Phenobarb .. but some others had an awful experience on it.  It was clear to us that before we even went in today, we were going to have to listen to what the doctor said, take our opinions, and all the advice we had recieved from other families and put them all together to make some sort of medication decision. Luckily, Dr. Z seemed to have a similar philosophy. 

Dr. Z laid out all the medication information.. the different types, all the possible side effects, effectiveness of the medications in her type of seizures, etc.  He did recommend starting with Phenobarb and going from there.. if we felt she was acting too sedated, we could just call him and he'd switch her medication.  A lot of seizure treatment is trial and error, so he said for us to be open to many options as things can change.  After much discussion, we felt comfortable with a decision - to start on the Phenobarb as he suggested, and take it a day at a time.  We felt Dr. Z was open enough with us, and really making an effort to work WITH us... so we did value his opinion.  The last thing we wanted was Meagan seizing several times a day - being uncomfortable, and with no end in sight.  We got the prescription and finished talking with Dr. Z.  He continued to explain things to us and listened to every question we asked.  He gave us websites and sources to read ... and spelled out terms we should look up.  He stayed over a half hour after the office had closed to finish our conversation.  We were very happy with him when we left the office. "You got that Bunny all bundled up?" ... yep.. this was a doctor with whom I could build a repor.

So now, here we are.... Mommy gut - 3, Hydrocephalus - 0.  This one is a score I hate to have - because it means my daughter is having seizures.  But... in a strange way, this confirmation is relieving .. because I KNEW.. I just KNEW deep down that seizures were exactly what had been happening.  So as disheartening as it was, in another sense, it was good to have "closure" and to be able to move forward with ways to help Meagan feel better.

  Dr. Z said something today that will definitely stick with me.  He said "She's Meagan... she has seizures. She's still Meagan.  We just have to take a day at a time. Just one day after another."  And he's right.  Meagan is perfect.. she's the most perfect person she is SUPPOSED to be .. Hydrocephalus, seizures, and whatever else is in her future... it's just who she is meant to be.  None of these things define her ... but they are PART of her.  And that's just life.  As a famous movie character said ... "life is a box of chocolates.. you never know what you're gonna get." ...and that is so true.  But I'd like to add, that no matter what you do get, it's still chocolate and it's still sweet.  And that's Meagan.  Her seizures are just another variable we'll have to deal with... but she's still her sweet self, and always will be.

If it means more sleepless nights of snuggling to make her more comfortable, I'll do it.

My sweetie