On Our Own Island

We love going to the beach any chance we get.  BK and I are beach bums at heart and are raising our boys to slip into that mode soon.  But being “on our own island” is not peaceful and relaxing.  It’s lonely.

We went to a pediatric neurologist who recommended a neuro-psychologist.  So Caleb was evaluated and tested – it was the first time it was mentioned that he showed characteristics of ADHD and bipolar disorder (BP).  What?!?!?  I became an avid read on both ADHD and BP.  I knew nothing about them before that day.

Early onset BP is a controversial subject because some professional believe children can have BP and others are certain they can’t.  Not to mention children present BP very differently from adults (so I’ve read and experienced).  We believe Caleb rapid cycles.  Going from one feeling to another very quickly.  And once he’s done (with a fit) he doesn’t remember it.  While he’s in these fits (we call them manic moments – that last a long time), he’s not there.  The Caleb we know goes away, his eye glaze over and looks past us.  When he’s done and exhausted he wants to be held and loved by the parent that was the primary recipient of the fit.  After experiencing a fit for 45 minutes it’s hard to jump to loving mode but we must do it for him.

So now we have three suggestions of what could be Caleb’s problem.  No one wants to diagnosis.  They don’t want to make a mistake or put a label on a child at such a young age or they simply don’t really know.  When I studied the disorders, he shows signs of each of them.  But not one of them completely represents him.

We have a friend that is a doctor and early on he made the comment that we would probably see numerous sub-specialists and go down many paths before we find out what is wrong with Caleb.  How profound that statement was.

Our next stop is a child psychiatrist.  He looked at Caleb’s facial features and mentioned alcohol or drug abuse in the womb.  We later found out that the birth mother did drink during the first three months of pregnancy, we’ll never know how much or if anything else was taken. 

We literally spent 2009 trying 10 different medications to give him some peace.  The real challenge was the need for a diagnosis so you know which med he should take.  If a child has BP and you give him ADHD medicine without treating (medicine) the BP they can have some very intense reactions.  At least that’s what happened to us.  His horrible fits got even worse!!!

Pretty early in the process our first child psychiatrist moved way south and reduced his practice.  We started seeing a psychiatrist that shared an office with the first.  After three visits we never went back.  It is very important that you are comfortable and have confidence in your psychiatrist.  We were blessed to locate the Texas Child Study Center www.dellchildrens.net/tcsc they have been a God-send for Caleb’s psychiatry needs.

There are still medication trials taking pace but he has a great team that wants the best for him – and they know who he is and his story!!!  We don’t have to remind them every appointment.

The great challenge has been his unusual reactions to the medications.  Often he either has an opposite reaction to what is expected or he is the small percentage that has the rare side effects, which is why he has been to a hematologist and a cardiologist.  We now know his white blood count is typically low and that his heart is in perfect condition (finally some good news J).