Another door is closed...

We took Mason to Baltimore to Kennedy Krieger Institute.  He was evaluated by a team of people (Occupational Therapist, Dietitian, Behavioral Psychologist, Nurse, and Speech Therapist).  In our therapy session on Wednesday evening, we prepared Mason for the meeting.  He took it about as expected.  Mainly feeling betrayed because we had told him he wouldn’t have to do anymore feeding therapy.  

He slept most of the way to Baltimore, which was a little unusual.  Due to rain and traffic we were late, which added a level of frustration to everyone.  Mason was not cooperating and a little belligerent.  They took his vitals and his blood pressure was way too low.  This is a side effect of the non-stimulant ADHD medication he it taking.  When asked the standard suicide questions “do you wish you were dead?”, Mason answered Yes.  This immediately set of alarm bells for everyone, but David and I had heard this before.  Some of it is depression and some of it is said to get attention.  He answered no to all the remaining questions and was not believed to be a risk at this time.

The team sat down and discussed our journey to this point and evaluated  Mason’s ability to eat a variety of favorable and unfavorable foods.  They recommended that Mason be admitted for an inpatient intensive feeding therapy for 6-8 weeks.  He would have a recovery plan customized to his needs and a team dedicated to meeting his goals. 

This all sounds wonderful, until we questioned them further, specifically the Behavioral Psychologist.  They have no interest in getting to the root cause of the feeding issues.  Their goal is to make the child eat.  If that means sitting with the child, who is in a high chair (even at 10), and holding a spoon in their face for hours until they eat, then that is how they are going to reach the goal. If he eats the food he gets to go play.  If he doesn’t eat the food, he goes to his room or loses other privileges. 

This approach may have worked when he was much  younger, but we cannot see this happening to Mason at 10 years old.  The sensory issues are there and not going to go away.  We can put him into this program and he will do whatever necessary to meet their goals so he can go home.

Mason’s therapist wanted KKI to see him at rock bottom.  He did not disappoint.  Though they offered services for the depression as well as the intensive feeding therapy, at this time we do not feel this is the program for him.  There were too many cons to discuss in a blog post, and we  both have a peace about our decision.  We need to stop and reevaluate before pursuing any more programs.   We have several different options...pursue further PANS testing, have him evaluated by a neurological psychologist, and/or an endocrinologist.  All of which are expensive or not covered by insurance.   Thank you for all your prayers that helped us get this far. Please continue to pray for a clear cut direction going forward.