Sunday, March 6, 2011

Along The Winding Path

Ok. I cannot believe it's been this long since I posted. I think I've started 3 different posts, only to be interrupted and had to stop. If there's too much chaos around me, I tend to start typing what I'm listening to. And we don't want to go there. You don't need to hear the kids' arguments. Ahem.

So while I'm still waiting to get into the CDRC for testing for Holland, Super Hero's insurance got changed in January and I had to start all over looking for yet another psychiatrist. I could have continued with the nurse-practitioner we had, but I don't want to spend $50 each visit. So I looked at our insurance list and just started calling doctors who fit the bill (nice little pun there). I ended up choosing someone who answered his own phone and was willing to talk right then about what it was we were needing. He had an opening the following week for an evaluation of Holland. The first five minutes he was fine. Then he started complaining he was bored. He wanted to go home. He didn't want to be there. What does that light do? Can I use your computer? Do you have wireless? Can I bring my laptop and hook it up to yours (no's to all these), then - I'm bored, I hate this, I want to go. Doctor started tossing a ball back and forth with Holland and pretty soon he was answering questions again. He contined to wander around the room, touching, opening, crawling under, flinging and playing with anything he could touch. If you didn't know the kid I was talking about, you'd think he was 4. He's about to turn 12!

So, our appointment didn't last as long as was scheduled (90 minutes), but we were to come back the following week for more observations. I also brought all his school testing, the private testing we had done, the last doctor's chart notes from the 4 years with him and his current IEP at school. By the end of the second appointment, this doctor was sure that it is not Bipolar Disorder, but rather ADD (yes, not the hyperactive one!). After reading through all the school notes, testing, previous doctor's notes, he said he was shocked that no one else had come to this conclusion. He said every doctor we had had, just stuck with the bipolar diagnosis. He said it's glaring the amount of symptoms he displays for ADD. It's all about executive function. Think about it like this, he lacks the ability to use cognitive reasoning skills. He lacks the skills for cognitive flexibility, working memory, directed attention and cognitive reasoning. This is why kids with ADD cannot finish a task, or get distracted while doing something and move on to something else.

We talked about taking Holland off all the anti-psychotic drugs. This is the first time (other than his hospitalization) that a doctor has suggested taking him OFF something. Not only are the drugs he's on powerful, they can have severe side effects. And these drugs are not tested on children. They are tested using adults and then adjusting the dose based on weight. The process will be slow. He wants to take him off gradually and meanwhile start an ADD medicine called Intuniv. He's actually been on this before. The NP gave us samples. But when we went to fill the Rx, it cost $50 for the month. There is a generic of it, but it has to be given more often and a higher dose. I noticed a difference between the two. I'm praying (yes, you pray too!) that our insurance will just charge a regular co-pay. The insurance says we have to get preauthorization with this drug. Which the doctor says usually means they aren't going to cover it. But God could have different plans. Look how He got us to this point. We've been through 4 different doctors and a major hospitalization.

He's been on the Intuniv for two weeks now and I've noticed differences. He's doing a bit better handling change, being able to go to school without a major meltdown. He still gets himself in trouble when he doesn't get his way. He'll be up to the full dose in another week and then we'll go from there.

So finally the big update. Hoping that it won't take me another month to keep things current.

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