Jonathan Armer Update (Newport News, VA)

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 Jonathan’s story, see his original story click here: Jonathan Armer.

Many of you have read about our lives before STX209, during STX209 and after STX209.   ONE thing has NOT changed…….our LOVE for our children and our evidence that we will fight for our children!  We all want the same thing, for our children to live happy productive lives.  Is that too much to ask???  We do NOT think so and we will continue to fight to help our children achieve this!!!

As a parent of a special needs child, we put a lot of faith into our doctors and pharmaceutical companies to help us find what is best for our children. Probably more than we should, but when a disability comes along that you do not know much about, you have no choice.  You trust these medical professions because they have been to school, they have learned about it, and they have studied it. They appear to know more about than you, so you trust them to help guide you to make the right decisions for your child.

My son is 15 years old and it is sad to say my faith and trust in doctors and pharmaceutical companies is about gone.  Through 15 years of 25-30 doctors that my son has seen for numerous medical conditions, he has only had 3 that have earned my trust.  Three doctors that admit they do not know all they need to know about Fragile X, but have been honest with me and have been willing to learn what they could to benefit my child,  his primary doctor, Dr. Lindeman, his hematologist, Dr. Werner, and his Gastroenterologist that is no longer in the area, Dr. Shaffer.  These 3 doctors have been with Jonathan for many years and they have gone far and beyond to help me understand things I don’t and if they do not know, they do not pretend they do, they admit it. I trust them, but more important, they trust me, as a parent to know my child.

As for the other 22-27 doctors, I am annoyed and I am angry.  We have had diagnosis of “developmentally delayed” and been told “he will outgrow it”.  We have been told to put him in a home when he was only 5 years old.  We have been told we are overprotective parents.  We have been told numerous times to “take this medication” and when it does not work “up the dose”.  For 11 years my son has been aggressive, for 11 years his previous doctor upped the dose and for 11 years this doctor NEVER told me that aggression was a side effect of this drug.  We have been told “nothing more we can do”, “therapies will not work”, “have you tried electric shock therapy?”  We have been told so much and I have learned over the years how wrong they all were!

Last year, once again I put my faith into a pharmaceutical company that was doing a study of a drug STX209. From October 2012 through May 2013 things were looking up for us. Jonathan was doing great, he was active, and he was playing baseball on a team.  We drove 8 hours a day for this medication that was waking our child up. Then just as before, my faith was crushed. With no notice, they terminated the drug.  Just took it away and expected us to go on as nothing had happened.  They changed the rules; they changed expiration dates for us to titrate so they would not have to send us more pills.  If we would have stopped the trial, we were expected to do follow up blood work for “our child’s safety”, but since THEY terminated it……the blood work is no longer necessary.  I still have the pills sitting here, they have not asked for them to be returned from me, but they have asked other families to return theirs.  So many questions unanswered. Faith completely crushed.

Jonathan’s primary has now taking over writing the prescriptions for Jonathans Concerta. He was the one that informed me of the side effect of aggression. He is currently working him off of it now and we have not seen any aggression.  I cannot help but wonder how things would have been with the STX209 without the Concerta.  He made so much progress on it, but still had “some” aggression.  Without Concerta and with STX209 ANYTHING could be possible.  Jonathan could be anything he wanted to be.

Faith and Trust may be depleting but HOPE is only getting STRONGER.  I am hopeful that STX209 will one day get FDA approval. When it does, I will be the first in line.  By then, Jonathan will be off the Concerta completely and I am hopeful he will be that Happy Productive man that I am fighting for him to be.

We will be heard.  We will not stop fighting.

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