Wednesday, September 29, 2010

The Hunt for the Elusive Diagnosis, Again

Things have been...unbalanced here. We found a new psychiatrist through the in-home program. He raised the Intuniv after seeing Taz literally bouncing off the walls in his office. Taz has been sleepy since in the increase but that effect has worn off before. Hopefully it will again.

The new psychiatrist diagnosed Taz with Mood Disorder NOS with questionable ADHD and PDD-NOS. He recommended seeing a developmental pediatrician to get formal testing done (mostly IQ because the in-home team keeps hinting that Taz may have borderline MR) and to rule out autism spectrum.

But I'm not going to. IQ tests are only accurate once every three years and I'd rather do it right before he enters "real" school where we may need to fight harder for services. Plus, I just don't feel like doing more testing.

There's another diagnosis we are waiting to be evaluated for that we feel pretty certain about Taz having. It's FAS (Fetal Alchohol Syndrome). I confirmed recently that his birth mother drank while she was pregnant. He has some of the facial features and many of the characteristics. A specialist is reviewing his medical file and then will call me for an appointment.

If he has FAS, it doesn't change anything. Not course of treatment, not medications, not school setting, maybe our expectations for the future? But what I feel strongly that it does do is make professionals (teachers, therapists, etc) view Taz more as a victim than a spoiled brat who's mother is too lazy to discipline him (or whatever they happen to believe about mental illness and medication). If he has the label of FAS, I think he'd be treated with more compassion than disdain.

Anyway, that's all that's going on here. He's had a few days in the row that were looking a lot like before we went to the hospital back in July. But with the medication change and school starting I'm waiting to see if things stabilize in a few weeks before I start freaking out.

Sorry I've been negligent about reading other blogs. All my free time is spent on my book, which is almost done by the way. I had two people from my target audience read the first half and they loved it. The next step after I finish it is to send it out to members of my target audience (women who like supernatural romance) then make edits with their advice. Then I'll send it to an editor and make changes she suggests. Then off to the publishers! Oh, and offer it on Kindle. That's where the real money is anyway. Kindle sales have lower overhead than print so you can make more money that way. But I want to see it in print too. And I'm not really expecting to make money on my first book. I just want people to read it and like it. But my second book...that's where I want to see some cha-ching!

Monday, September 13, 2010

Good News, Bad News

Since leaving the hospital we've had an intensive in-home psychiatric service at our house twice a week. We were working with two clinicians. The case manager was wonderful, but didn't come as often as the regular clinician. I had high hopes for the clinician because 1) he was male, and Taz really looks up to men and 2) he worked for years in a psychiatric hospital.

Well, after week three I realized he's kind of a dud. He might be good with older kids, I don't really know. But he seemed very uncomfortable around Taz and I wonder if it might be because of his age. Sometimes men have trouble with younger kids. Again, I don't really know. But he wasn't helpful. Beyond saying, "that's not nice," any time Taz did something aggressive or mean, he didn't offer much else.

Two weeks ago he brought another clinician from a different team who has special experience with sensory issues. She wasn't assigned our case but was offering a consultation to help.

I loved her!

She "got" Taz right off the bat. She didn't hesitate to jump in when he was having a problem. She talked him through his feelings about why he's mad at me and calling names. She was calm but confident. She was awesome!

So, I called the director of the program the day after and asked to be switched to her team.

She said yes!

Actually, she said that the girl came back from our house and asked why she wasn't given our case. She obviously felt the same connection.

Let's call her "Katie". She came last week and in one session did more than the other clinician did in four weeks.

I'm very excited to work with her!

That's the good news.

Here's the not so good news.

I can see Taz deteriorating again. I'm hoping it's just the anxiety of starting school. Or maybe because his sleeping patterns have been a little off.

But I'm really really really really really hoping he stabilizes quickly. I am NOT looking forward to another medication change.

Actually, I'm terrified of it.

And I'm most definitely terrified of ending up back in the hospital. I nearly have a panic attack when I think about it. And even though it helped in the long run, it felt like a nightmare.

So, send happy, fuzzy, lovely, positive thoughts our way if you can.

Friday, September 3, 2010

We Just Won the School Jackpot!

Holy Freakin' Miracle!

I've been worried about Taz's new school since before summer even started. They've been giving me a hard time about everything.

Then I get a phone call from his teacher last week to schedule a home visit (all the teachers visit all their students before school starts in our city), and she informs me that she is not a special ed teacher.

Basically, the district is stingy. They hire regular ed teachers for all the classrooms, then one special ed teacher to rotate through providing just enough time in each classroom to satisfy the legal requirements for each child with an IEP. Blah. I was geared up for a fight.

But all my frustration and fears were put to rest with four little words.

My daughter has bipolar.

The teacher said it. Her daughter is 24 yrs old but has had it since she was a child. Then she said, "I'm speaking to you as a parent not a teacher. Your son might do well in school then fall apart at home. It's not your fault. It has nothing to do with you as a parent. It's because he feels safe with you. This is a long journey. I understand that there are things that happen with our kids that can't be fixed. I understand how hard it is to accept and how much you want their pain to go away. You won't find judgment here. I will advocate for your son and his needs. It's good we're starting early."

Halleluhah! Can I get an amen for this miracle?!

Someone who gets it. Right off the bat before even knowing us or my son, gets it.

With the last school system I was stared at, judged, met with silence when I explained things about bipolar disorder. And this lady is now telling me about bipolar.

Seriously. God must have had something to do with this.

And that's not even the only good news I received today. But you'll just have to wait till I have more time to write the other news.