Tuesday, February 9, 2016

Our Man of Steel

Wow, Will has grown since our last post!  Today, it has officially been 5 years from the date Will was diagnosed with infantile spasms, and even though it has been a long time since we have updated this blog, we felt that this is a day worthy of an update.  We are also celebrating an amazing milestone, as Will has now been medication free for an entire month!  He has been doing absolutely awesome in every way.  In September of 2015 we celebrated 3 wonderful years of seizure freedom, and began the very slow process of weaning him off of Keppra, the only remaining anti-epileptic medication that he was on, a process that went smoothly and we finished in early January.  We now enjoy a child who is completely un-medicated for the first time in 5 years. 

The thought of Will being medication free was both exhilarating and terrifying for us.  We had to choose between attempting to wean him off of medication, or keeping him on medication for life.  By definition, any anti-epileptic medication alters brain function, and while Keppra has been better than others for Will, it does carry with it a laundry list of side effects.  For Will, Keppra has caused bouts of rage, loss of appetite, and potential loss of bone density over time.  We know that there is a chance that Will could relapse, and we know that if he does, there is also a chance that it could be difficult to regain seizure control.  We have read countless studies and statistics, and while we know that the odds are in his favor, it is a scary thought to not have him on any medication to protect his brain from seizing again.  However, we felt that we owe our Buster Beans the chance of living a life without medication, and the side effects that go with it.

Jack (9), Will (6) and Cole (2)
Will is now 6 ½ years old, and he is in kindergarten!  He is attending the Julie Billiart School, an amazing place for kids with special needs, just like him.  It is about an hour's drive away from our house, and the logistics of getting him there and back haven’t been easy, but he is thriving! In his class, there are 11 kindergarteners and 2 teachers, both of whom are intervention specialists, and have chosen to spend their careers helping kids with special needs like Will.  Will receives occupational therapy and speech therapy at school, in addition to the therapy he receives outside of school.  At his school, Will isn’t “different” - he is one of the crowd.  He has been able to make friends and fit in with his peers in a way that we know wouldn’t be possible anywhere else, and he has been able to get the additional time and attention that he needs to enable him to learn.  

We don’t know what the future holds for Will, and there are times that can be very scary to think about as parents.  He still has significant cognitive delays and likely always will, but we prefer to focus on the positive.  What we do know is that Will continues to amaze us with his progress each and every day.  He can write all of his letters and numbers.  He can count to 100, is learning sight words, and is working on how to sound out the letters to read simple words.  He is FINALLY potty trained (yippee!), a life skill for which we are so grateful.  In the months since we began weaning his Keppra, his cognitive skills have come alive in ways we never thought possible.  His ability to reason through logical concepts on his own has really been amazing lately.

Will is a testament to the progress of modern medicine, the power of prayer, and a bit of unexplainable luck.  He suffered from intractable infantile spasms, a severe and catastrophic form of epilepsy that carries with it an almost certain risk of severe and profound mental disability.  He missed out on over 2 years of development, at a crucial time in his childhood.  He is missing 2/3 of the left side of his brain, and half of his vision.  And yet, to the casual observer, he runs, jumps, laughs and plays just like any other 6 year old.  We know so many other children with similar stories who have not had similar outcomes. We definitely haven't come full circle, but our Buster Beans has come a remarkably long way in the past 5 years. So, it is with great excitement, joy, and gratitude that we celebrate the miracle that is our son, and the odds that he works so hard to overcome each and every day.  


  1. So much to celebrate! What an amazing guy. Go Will, GO! Big hugs all around. Congratulations!

  2. Hello,
    Thank you for sharing with us your story. it was a delight to see your beautifull son. also his skills is ouite impressive.
    we are from israel , our son is 1. 10 years old. also had infantil spasen and a resistable epilepsy. we tried many medicines, ketogen diet and it appears its going towards a surgery. MRI shows problems in temporal and fronatl lobes. the situation has brought kognitive delay . i wanhted to ask - you wrote in your post that you know children who are in worse situation, have they done a surgery or not?
    from what you know and what you have been told -is their a possibility of damage from surgery to skills the child has now?
    where have you done the surgery?
    thank you very much, sigalit porat, sigalitp78@gmail.com