Harry Zucker Update (Skokie, IL)

We will be following up with the children as they titrate off the medication and resume life without it. This is the first update to Harry’s story, see his original story click here: Harry Zucker.
 
By Jeanie Calenoff

How can I convey to you the degree to which arbaclofen helped my child?

A nine year old when he entered the Phase 1 STX209 double blind study at Rush University Hospital in Chicago, Harry was a very tough customer when it came to drawing his blood for the baseline. He wouldn’t allow the doctor to do it. She had to accompany us down to the blood lab, to butt ahead in line of the twenty or so people already there and explain the study and why this screaming, intolerant child had to go first and now.  The act of taking blood was extremely hyperarousing to Harry. We are lucky that the needle didn’t break in his arm.

I don’t remember how much later we started to take (at the time) the little red pills. But I do remember and will never forget the sparkle I saw in Harry’s eyes.  I knew immediately that he was on the drug.

Over the course of this study, I didn’t have to keep my ear cocked to the door when Harry was out of the room while I did paperwork. He was already acting more independently, not requiring someone to watch that he wasn’t going to strike out at someone or injure himself.  And as far as blood draws, he volunteered for every single one and did it without protest and with lightning speed.

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My 13 year old son Harry is a genius who is trapped by Fragile X.  His maternal grandparents are a molecular biologist and a professor of radiology.  His paternal grandfather was a gifted linguist and several times courted to work for the CIA.  Until Harry took arbaclofen for 3 and ½ years, he could not see how smart he was. He was not able to show me or see for himself his true intelligence.  During these past three and a half years on the arbaclofen extension, I saw so many improvements in his abilities that I became really hopeful about him having an independent and promising future.  While taking arbaclofen, the veil of Fragile X started peeling away and the fears, sleeplessness, aggression, gagging, oversensitivity to sound, touch and smell disappeared.  As his mother, I no longer had to be hypervigilant, always looking to probable stimuli that would cause my son to become hyperaroused and unmanageable.  After nine years of being called to retrieve Harry from school (some years on a daily basis) because he was hitting people or screaming or throwing and breaking things, after nine years of daily washing out his bed sheets and clothes from his perpetual vomiting and after nine years of crossing the street blocks in advance because the landscapers or a dog were in sight, I got to see a kid who was no longer stymied by Fragile X.  On arbaclofen, not only did Harry stop being afraid of dogs, of lawn mowers, of crowds or of saying hello to a neighbor, he stopped gagging at the smell of food, stopped banging his head against the wall, stopped head butting or grabbing me or slapping other unsuspecting children who happened to be standing nearby.  He became self-aware, confident and outgoing.  He would have expanded conversations with emotions that he could express.  He no longer avoided reading, exercise or getting hugged.  Without social anxiety and with a cleared head, he now learned the games the other kids played in gym.  He could shower and dress himself, brush his teeth and use the toilet with minimal help.  His speech skills exploded and he repeated any word correctly, recalling and using it appropriately. His grammatical errors ceased.  His teachers and I also saw abstract thinking.  He was constantly surprising me with what he was thinking, what he could say.  In this time period Harry also learned to swim and to run. Prior to taking arbaclofen he couldn’t even get into a pool.

As I write this, it is Day 9 of Harry is weaning down from arbaclofen.  From 45 mg/day, he is currently (this week) on 20mg/day.  I am already seeing the return of some of his old ways.  He is gagging again at the smell of food, he is wetting his bed, his aggression (so far only towards me) is making its appearance.  His anxiety about loud noises and crowded settings is returning.  His personal trainer described to me the look of pain he saw on Harry’s face as Harry swam in a friend’s backyard while the landscapers were working.  Harry is now as big as an adult and should he become hyperaroused from lacking the filter arbaclofen provided for his senses, he could cause great injury and destruction in any of his social situations.

I am taken back to November 2009 when Harry was titrating down from the drug to the placebo during the second blind portion of the Phase 1 drug trial.  I am tough.  I dealt with the trials of the nine years prior to the arbaclofen.  I did my best and took him and paid for every therapy imaginable.  I realize that none of those therapies made a real difference.  It was only from the arbaclofen that he overcame what was holding him back.  Now my son will experience heartbreak and severe frustration.  He will be lost again in his Fragile X world, unable to express himself, do what he could do or be who he knows he can be.  We saw a dream come true.  He felt it.  He lived it.  He shone.  Can you imagine losing yourself when you cannot take the medicine that opened your world to you?  Can you imagine if it was you or one of your children?