Friday, November 8, 2013


Every day, from the moment Max wakes up, all the way through the night we are charged to make decisions for him.  Max is considered a complete care child.  His needs are that of a newborn, in a 10 year old body.  He relies on us for everything.

I do not start with this to gain sympathy.  He is not a burden to us.  It just is what it is.  It is not harder or easier for us, than it is for anyone else's difficulties in life.  Some things are easier than others in his care. Holding Max for a cuddle when he's not feeling great - easy.  Carrying Max who weighs more than half my weight while he's screaming and kicking - harder.

The one thing I will never find easy, no matter how it comes at us, is making the hard decisions which could change who he is.  We are faced with a "rock in a hard place" decision right now.  Max's seizures have started to show up again.  Since summertime, we have increased his seizure medicine quite a bit.  We had to go up again a couple of weeks ago with the understanding that if it didn't keep seizures away for two weeks, we will need to consider a new medication.

That consideration came around yesterday while talking with Max's neurologist.   The type of Max's seizures has changed.  The length and frequency has changed.  They are not as out of control as they were this summer.  But, we do not have control like we did before they started peaking through early this year.  The type that are showing up more frequently are more dangerous to him, and harder on him. It is not something we can just let him have without keeping in control.

So, we are left with the decision to start a new medication.  We can start the new medication, and face new side effects and it may or may not work.  Or, continue to go up on his current medications which will continue to cause agitation and mood swings and may not continue to work.  Right now the increases help for about two weeks then we see breakthrough seizures again.

But wait...we live in Colorado.  We should just get that magic weed that's legal now.   The problem is, that magic weed is still illegal federally.  If we were to start him on that we could never leave Colorado with Max without becoming drug traffickers.  Max is in a national study also, which is funded by the federal government, we could not give him that medicine in that facility.   Max doctors can not support a wean off his current medications, or treat Max on marijuana.  And we rely on his doctors' care on a daily basis.  Home nurses could not administer, and neither could hospital nurses. So, until it is more regulated and legal or more accepted on a federal level, we have to go the pharmaceutical route.

Rock in a hard place.  Impossible decisions.  And as always, seizures suck.

For 10 years, Max's neurologist has been beside us with every hard decision we've had to make.  Brain surgery, induced coma, non-FDA approved medication, encouraging us through incredible moodiness while titrating his second seizure medicine until it started working, not treating seizures that weren't as severe as the medicine that would stop them, administering rescue medicine at home to avoid an ambulance ride to the hospital, and now starting a new medication in hopes that we will get to a point where we are not seeing seizures again.

We trust Max's doctors.  Not because they have all the answers, but because they have always had Max's best interest at heart, and are human enough to tell us they don't have all the answers, but this is our best option right now .  They have so much invested in him, they fight for him and with us.  And while they are simply human, they never make suggestions for Max lightly.

After talking it over all day, and knowing we won't know until we try, we started the new medication tonight.  As with everything, we will let you in on the journey.  If you have some extra good thoughts and prayers as we start this new treatment that it will work and we will continue to see our happy boy through it. We always appreciate them.