2/18/2015 – JR’s Update

Per JR’s mom Sandy, it is no longer like one good day and then a bad day.  It is now progressed to 10 to 30 minutes of mild behavioral issues; then there is a build-up into a huge meltdown which can last for up to one hour (longest to date for JR).   JR’s Dad tends to have that more authoritative voice and can get JR to calm down faster; however, eventually it does come back.

His physical behavioral issues are lasting longer and longer – to the point of exhaustion.  It is like he has worked out for hours when he has only done movements for 15 minutes.  Then he has a short break and it starts all over again.  It is daunting to watch.  Everyone who sees it has great sympathy; but their are still no answers.

We understand JR’s testerone levels are very low and this continues to concern us.  We have asked he be checked out by a urologist to confirm he is free of any kidney/urethea/male anatomy issues.  He does complain to his parents about these areas and continues to hit them.  We think it may possibly be a torsion of the spermadic cords and is why we have recommended a urologist look at him.

He continues to see his doctors and they talk about various medications and tests; but nothing has led us in the direction that resolves these violatile movement issues.  We continue to recommend all medical intervention.

On the up side it seems he wants to talk more; as he is doing what he use to do right before he lost his words.  He continues to want hugs, human interaction and friends.  He is always asking for his pain to go away and today even prayed to God asking to be healed and peaceful.  He also asked God to give him a hug and shine his light on him.  It was very touching for us all to witness.

 

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