Mystery Lane

Mystery Lane

Wednesday, February 9, 2011


So much for moving on, I’ve fallen into another self pity trap.  This one consumed my whole day yesterday.  Lots of crying, being pissed off, and generally in a crappy mood.  The day started with our appointment with the neurologist.  For those of you who are special needs parents, you probably know where this is going.  Appointments with specialists tend to go really good or really bad.  So yesterday Dr. Reggin was going to tell us what came out of the conference he had with the other pediatric epilepsy doctors regarding Jackson’s case.  In the past we have been told by doctors that a Corpus Callosotomy (brain surgery separating the two side of the brain) was probably an option for Jackson.  While I hated the thought of surgery on his brain, I loved the idea of him not having seizures.  The surgery has been fairly successful in stopping seizures.  Yesterday we found out that wasn’t an option.  I was kind of crushed about that.  Instead our options at this point, in my opinion, suck.  There’s the Ketogenic Diet, increase in current medication, new medications or implanting a vagal nerve stimulator.  Well I have looked at the Ketogenic Diet.  It’s ridiculously difficult to administer, is an extremely high fat diet, limits food options, and hasn’t proven to be effective long term.  Since Jackson’s favorite thing in the world is to eat, I am not willing to do this limiting diet that would change our lives to administer it.  How about increasing his medication?  Well the medication he is on now is Topomax/Topiramate.  He hasn’t had any noticeable side effects.  Dr. Reggin told us yesterday that with this particular medication there have been signs of decreased language ability.  The higher we go with the medicine, the more we may be hindering his language.  Jackson’s language is already hindered.  Do we want to possibly damage it more?  The two new medications Dr. Reggin mentioned were Depakote and Sabril.  I’ve looked at Depakote and it scared me because of the potential liver damage and behavior problems.  Dr. Reggin did say the liver damage was mostly in children under 2, so that reassured me a little.  Sabril is relatively new and has proven to cause eye damage.  If Jackson goes on this medicine he will have to see an eye doctor every 3 months and have electrical tests done to see if damage is occurring.  That leaves us with the Vagus Nerve Stimulation.  This is where they implant a stimulator under the skin that will send electrical impulses to the vagus nerve in the neck to stop seizures.  I don’t know a lot about this procedure but I do know it is usually used in people 12 years and older and it doesn’t necessarily stop the seizures, just reduces them.
So what option would you take for your child?  They all suck right?  When Dr. Reggin asked what we would like to do I thought (not out loud) that I would prefer to be hit by a semi truck and be put out of my freaking misery.  I really thought that.  As I sat there and listened to all of his explanations for each option I had to fight back the tears.  I didn’t want to be there.  I don’t want to deal with this shit.  I want Jackson to have a normal brain.  I want to be at some Mommy and Me class.  I want to spend my days chasing after Jackson at the playground, going down the slide with him, coloring with him, hearing him say “What’s that Mommy?” about 600 times a day.  Instead I’m in some sterile room in a hospital listening to a neurologist tell me that there isn’t a lot we can do to fix the seizures.  Which in turn will continue to delay his development and no doubt lead to severe mental retardation.   So there I went, into more loathing in self pity.  The worst part is that when I’m hurting I want to call my Dad.  I just want to hear his voice.  I need to hear him say it’s going to be okay.  But I can’t.  My Dad died last year.  And that only makes my pain worse. 
So for now we chose to up Jackson’s current medication by one pill.  Next week I will take him in for some blood work to make sure it isn’t too much medication for his system.  In the meantime, Seattle Children’s Hospital will be contacting us shortly to make an appointment to go there for a long term Video EEG (at least 24 hours) and a PET Scan.  We may also have a 3G MRI done here in Spokane.  That is a more detailed MRI that can show the layers of the brain and detect damage better than a regular MRI.  I’m all for these tests.  The more information we can gather about Jackson’s mystery plagued brain the better. 
I woke up today determined to not be down.  I am not going to do the self-loathing thing.  I’m sick of it.  Instead I am just going to hang out with my little boy and enjoy who he is.  We are going to go to Costco (his favorite store) and maybe a walk this afternoon.  I am going to drag myself out of this.  I have a little boy who needs and deserves a Mom who isn’t constantly feeling sorry for herself.  I can’t let the cruel fate that was inflicted on Jackson consume my life.  Jackson is too good for that.

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