Wednesday, December 16, 2015

Joseph's Appointment At Kennedy Kreiger Institute

Yesterday was Joseph's long awaited appointment at Kennedy Kreiger Institute. We waited 6 months plus for them to call to schedule an appointment as they only schedule three months ahead. In September they called and scheduled an appointment for December 15. At the time, December seemed like a long way into the future but as always, time moved on and now it is history.
  We were hoping for a diagnosis of FASD but are struggling to get it because Joseph does not have the facial abnormalities that typically go with the fetal alcohol. Someone asked why we are seeking a diagnosis, simply put, we want a paper trail as well as a name that can clarify Joseph's actions if the time comes when we need it.


This isn't a very good picture but it will give you an idea what the children's waiting area looks like. Joseph loved it.

   A year ago I took Joseph to CHOP (Childrens Hospital of Philadelphia) and they said he has a mood disorder. That didn't feel right to us so when I heard favorable reports about Kennedy Kreiger Institute, I made an appointment.
   It was very interesting to sit in on the evaluation and watch Joseph at work. His balance and muscle strength have greatly improved thanks to weekly OT. 
   Like most children who were exposed to alcohol in utero, Joseph detests rules. He feels they were designed to make his life miserable and perhaps if he fights against them long enough, they will go away. That mentality earned him a diagnosis of ODD, which we do not agree with. Joseph's inability to understand cause and effect make it impossible for him to understand rules. 
  He was also diagnosed with encephalopathy which, I have been told, may be better than the FASD diagnosis we went for as the medical world is more likely to recognize it.  
   He also has anxiety, which is very understandable considering the way his brain works. The doctor highly recommended anti anxiety medication as well as something for his ADHD. I need to find a knowledgeable, trustworthy psychiatrist who will help us know if medication is truly in Joseph's best interest. 

Waiting for the doctor to come in. Joseph thought I could lay down and sleep awhile. Leaving at 6:30 am made for a long day!

We stopped at Burger King for lunch and Joseph felt that was enough to make the long drive worthwhile!
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