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Equetro To the Rescue? (December 05, 2009 - 8:35 a.m.)

We've bounced around some more in our journey with Stephanie. As I pick up where the last one left off, the following morning, I started trying to get in touch with the psychiatrist. They don't have regular office hours on Fridays, but there is an "emergency" number press on the answering message. We decided this was an emergency. So I left a message there. Then I called the mental health network listed on the back of our incurance card and had a conversation with the lady there. The psych called back and said we needed to take Steph to Springwood, which is the hospital attached to the regular hospital and doctor's offices in Bedford. He said the evaluation was free. I checked back with the mental health network and found that, yes, this hospital was covered for at least the rest of this year.

So Christi came home and got Steph and took her to Springwood. They evaluated her and determined that they couldn't help her.

*excuse me?*

Well, they said, if we admit her, it would "traumatize" her, and their adolescent day program is highly based on group therapy which involves talking and communicating en masse, which Stephanie won't do.

So, we're back to square one (or maybe even zero). Christi calls the psych back, who is very disappointed in Springwood's response, and says to call the office Monday and tell them he said to "work her in sideways."

We also began doubling her Abilify dosage.

The weekend was, well, I really don't remember much about that weekend.

Monday, there was also a checkup with the rheumatologist. So Christi stayed home and handled all of that. There was a major meltdown at the rheumatologist's office, but the nurse there was very sweet, and, at one point asked Christi if she minded if she prayed for them. Of course, Christi didn't mind. So she proceeded to pray for several minutes, and, apparently being Catholic, prayed to God, Jesus, Mary, and every Saint you can think of. That's ok. Every little bit helps, right.

Anyway, they went on to the psych's office from there, and saw a nurse/practitioner that we had never seen before. But she was also very sweet and very helpful.

Oh...somewhere during all of this, we spoke to an old childhood friend of mine, whom I found on Facebook, who has an adult son who is autistic. She lives in Florida, now, and is very educated in terms of government assistance and school ISD requirements. Anyway, she mentioned something that we are looking into called Prader-Willi Syndrome. A lot of what Stephanie is experiencing fits the descriptions of this syndrome.

Anyway, the nurse at the psych's office mentioned that on that Monday morning, as well. Without any prompting from Christ, mind you. She said she would talk to a friend of hers, and that they would come up with a doctor that they would recommend for us. She also prescribed an additional medication for Steph, called Equetro. She said it was an anti-seizure medication, but if you "google" it, the first link that shows up says that it's for manic and bipolar disorders. There was almost an instant response. The rest of that week, through Thanksgiving was pretty good. In comparison to the previous week, it was amazing!

She called us back in a few days and recommended an endocrinologist. We have that appointment scheduled for next Tuesday (12/8). This doctor should help us determine if, indeed, Steph suffers from Prader-Willi.

Well, then this week started. Monday was ok, but Steph got sick at school. Not until around 3pm, though, so by the time I could get there, it was already normal pickup time.

She felt better by the next morning, though, and went on to school. Tuesday was pretty good, except for one "almost meltdown."

She had been pretty darned happy most of the time during this stretch, as well, which made us believe that this Equetro was doing something positive.

Wednesday, things started going south again. (I feel sorry for people in the south...why does "south" always have to mean bad?) She had two meltdowns at school. During one of them, she threw a pencil at another student.

Thursday, she seemed okay when I took her to school, but by 9:30, I had to pick her up. She was out of control, kicking the door of the classroom, and generally upsetting other students. The Stars teacher had to use restraint on her at one point. I got there, and had to go in. She was crying and we all walked out to the car with her. We got home, and after a little while I went to sleep.

At around 4, Steph woke me up saying that Mom was making her mad. Christi had called the psych nurse, and she had recommended that Steph not go to school on Friday. That launched a meltdown to rival all meltdowns. Steph wanted to go to school Friday. She didn't want to miss Biology. She was going to walk to school. At 4:30 on Thursday afternoon. She wanted me to call the Stars teacher and tell him she was walking to school. She screamed. She kicked. Oh, and I forgot about getting punched in the shoulder four times on the way home that morning, because I wouldn't turn around and go back and get the books she forgot. I never used my hands. I only folded my arms and pushed against her to keep her from leaving.

During this time, I was also trying to get her to take a Xanax. She was refusing to take it. Steph finally called her mother, who got on the phone with the psych nurse again. Steph had finally taken the Xanax. The psych nurse said to give her TWO more Xanax pills (it's a very low dosage). She finally told Steph that if she would take her meds and calm down, it would be okay for her to try to go to school on Friday.

This finally got her calmed down. The nurse wanted to double one of the daily doses of Equetro, though, to 400mg. We had increased to 200mg twice a day for this week. She is now taking 200mg in the morning and 400mg in the evening. The nurse said Steph could handle up to 1600mg a day, though.

So...Friday morning. I get home, Steph seems okay. I take her to Sonic for breakfast, and we go to school. About halfway home, I look down and see that she left her mp3 player in the car. "Oh, no!" I think. I went on home and waited for the call. It never came. I went to sleep, woke up at my usual time, and went to pick her up. At first, when I drove by I didn't see her. But by the time, I got around the driveway to the door (it was very cold outside), she was standing there waiting for me. Smiling.

I almost cried.

She had a great day. She was happy. We had a fine evening. Today is going okay, so far...but she's hungry for donuts. But she's seemed pretty happy.

Maybe this Equetro stuff is going to do the trick. Who knows? But we're gonna need more Xanax.

TTFN, y'all!

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