everything is possible... the impossible just takes a little longer

slow and steady wins the race

Wednesday, October 27, 2010

I'll take a Guanfacine Mocha Latte to go please

On Tuesday we saw Sam's neurologist.  Dr. Shah has been a beacon for us during Sam's dark Infantile Spasm storm and has thrown us more than one life jacket.  He is calm and compassionate and he truly understands what an incredible gift we have been given in Sam's seizure-free status and his progress.  Sam's delays are significant but he knows how hard Sam has had to work to be where he is today.  I joke that Sam has worked so very hard to be THIS delayed... and we are so very proud of him.  Slow and steady wins the race.  Dr. Shah knows that everything that Sam is capable of is icing on the cake... his initial prognosis was grim at best and he told us to prepare for the worst but pray for the best.  And Sam did get the best outcome.  Although is delays are considered moderate to severe now, when he was first diagnosed with IS we were told that being able to maintain eye contact for a 3-4 seconds would be a difficult goal.

Sam is now nearly 8 years old and has been seizure free for almost 7 years and free of HYPS for 6 years and off all seizure meds for 5 years.  AMAZING!!!  Sam is now walking, running, jumping, climbing stairs, matching pictures, making meaningful choices, had definitely likes and dislikes, is naughty, rides a bike and many more things that we never dared hope for him to be able to do.  And many people are completely clueless to how incredible Sam's IS success story is... and how rare.  He truly is Blessed and Lucky.

However, IS has taken a toll.  Sam's brain, in a sense, has had to re-wire itself and find new pathways to send messages.  So for Sam to get from A to B... he must go from A to Z to Q to B.  It is the long way around and sometimes he gets there and sometimes he gets lost along the way.   Unfortunately for Sam, he sometimes gets distracted somewhere between Z and Q.  He has been having some issues at school and sometimes he hits or exhibits other poor choices.... impulsiveness,  lack of focus.  This is nothing new but it is often difficult to assess what is a "problem" and what is developmentally appropriate naughty little boy.

So after much discussion and hand wringing and contemplation, we a started Sam on Guanfacine (or Tenex)
Guanfacine (Tenex) was originally developed as, and is still used as, a mild antihypertensive. Like some other antihypertensive drugs, Guanfacine (Tenex) regulates levels of the neurotransmitter norepinephrine; in the prefrontal cortex of the brain, it decreases sensitivity to distracting stimuli, and it therefore may help with focus. For this reason, it can be helpful in reducing ADHD symptoms, either alone or in combination with stimulants.

I have mixed feelings about this.  This topic has been discussed and brought up a lot over the past several years... a topic that has never left a good taste in my mouth but one that I knew I would one day have to swallow. On one hand I feel that Infantile Spasms (not to mention everything else) has robbed Sam of so much and if this will help him make those connections faster and help him to be less frustrated and more focused... fabulous.  On the other hand I hate adding another med to Sam's daily routine.  On the upside... the side effects are very minimal (virtually none) so there really is no down side in trying.  Sam is on the cusp of really grasping so many new things and I can't help but wonder... if he had just a wee bit of help could he finally complete some of those loose connections in in brain and unlock a few more doors???

Am I wrong to ask for more?  Considering the gift we have already been given... is it wrong for me to say "Thank you God for the miracle... now may I have another?"  Is it too much for me to hope for that one day Sam might learn to read, or be potty trained, or have a conversation with me about the weather ???  Am I selfish for wanting more than I was ever promised?

Look at those faces and tell me that I am wrong for wanting so much for them.

So we will see how it goes....   


Zoey's mom said...

Never wrong my friend.Never wrong.

And Sam is our beacon.As you were the light during those first days overwhelmed and frightened, with Zoey's Infantile Spasms diagnosis.And they were the darkest of days.I remember you telling me,"I can't tell you everything will be alright.But I can tell you that YOU will be alright.Those words still means the world to me today.

As for Sam and his new medication,our Joe has been on the very same, for a long time now and it has made the absolute world of difference in him and his little life.And ours as well.Honestly it has.If you want to chat about it you know where to find me.

As for your dreams of the possibilities that await you with your miracle boy because you know and I know,that is exactly what he is,those dreams will come to be.I have hope and faith in no other.While you dream of reading and potty training and the weather,I'll dream of walking and running and jumping and climbing and these two gifts of ours will pave the way,slow and steady as they go.

Leah said...

Angela has also been on Guanfacine for a long time. (4 years? 5? I forget now.) And it, combined with her seizures meds and one other thing has made a world of difference for her.

Fie said...

I just want you to know how amazing you are! Sam is such a fighter and he is so blessed to have you to fight for him as well.
Hope that you will get great outcomes and lots of new learning right around the corner. Hugs!