Kitty is home!

Thursday evening Kitty was hospitalized. I gave her her regular meds before I left the new psych hospital. I warned them that she hadn’t had her laxative in almost a week (because I’d run out and so had the store) and was already having trouble.

Friday, I was told they wanted to take her off all her meds except for the Trileptal (weak mood stabilizer), because the doctor thought she was on too many meds. It was my understanding that this would be almost a med wash. I approved adding Seroquel XR to help her sleep at night.

Over the weekend I was told they wanted to add Wellbutrin (an anti-depressant, that can help with weight loss). I said I wasn’t thrilled about adding an anti-depressant, and that I thought she’d been on it before, so I wanted them to review her records before I approved it. It didn’t make much sense to me in light of them wanting to see what she was like without meds. I gave Kitty a heads up that she would be at the hospital for longer than usual while they adjusted her medication.

On Monday I was informed by Kitty’s case manager at the psych hospital that she and the psychiatrist had told Kitty about the “med wash” and that she wouldn’t be able to “skate” through this hospitalization waiting for her five days (what Medicaid typically covers) to be up. That they could keep her up to 6 weeks. She said Kitty looked like she was going to cry and admitted that she does pretend she’s better whenever she’s ready to go home. I tried to assure them that Kitty probably isn’t trying to manipulate the system. She’s mostly just homesick, and psych hospitals are not going to fix her issues anyway. Her biggest problem is trauma. You can’t fix that with meds, or a couple of sessions on calming techniques (she could probably teach the class! – she just can’t access it when she needs it). This is why we’re trying to get her in residential treatment.

The case manager gave me more information about why they wanted to replace Depakote with Wellbutrin: that it would help with her weight, worked as an anti-psychotic as well as an anti-depressant, and didn’t typically cause mania (unlike most anti-depressants). I questioned how this was a ”medwash”? but really didn’t get a good answer. Just that the doctor has a preference for different meds. I also wanted to know how do you replace a mood stabilizer with an anti-depressant? They’re not the same thing. I questioned why we’re not trying Lamictal, which is a mood stabilizer. Basically she didn’t have an answer.

So Tuesday I went to family therapy. I was late, and the therapist apparently didn’t hear the page that I was there so we got off to a great start. Kitty came in, and they announced that it was up to me, but she could be discharged as early as tonight. I WAS FLABBERGASTED! Kitty and the therapist start talking about all she learned in therapy (BS! BS! BS!). I just sat there stunned.

Finally, phrasing it as gently as possible to not trigger Kitty’s abandonment issues, I told Kitty of course we wanted her home, but how in the world can the hospital believe that taking her off most of her meds and then sending her home is at all the right thing to do?! The therapist had no idea that we’d been told Kitty would be staying for weeks. The case manager of course wasn’t working today and the pdoc was on rounds and unavailable. They got the case manager’s supervisor on the phone, but she didn’t know anything specific about Kitty.

When they finally realized I was REALLY unhappy, they assured me that when I approved the Wellbutrin, which I was assured was really a miracle med that wouldn’t cause mania even though it’s an anti-depressant (Bear takes it so that wasn’t actually my concern), they’d be happy to keep Kitty for several more days to make sure that she didn’t have a negative reaction to the Wellbutrin. I repeated that I was more concerned with the fact that this was a child with mega trauma issues that “presents well,” who is barely able to stay emotionally stable (6 hospitalizations!), and they’ve reduced her meds by more than half, and then are dumping her right back into family and school. I explained a little bit about the problems we are having with the school.

I asked for them to write a note stating that Kitty needed to be homebound for awhile. They agreed to fax us an excuse for 7 to 10 days while we wait to make sure there are no negative side effects from the Wellbutrin (– school is out for the holiday, but that only gets us through next Wednesday if we’re lucky, and then we’ll be right back to being “punished” by the school). With that taken care of albeit temporarily, I told them I was taking Kitty home right then.

When Kitty had left to get her stuff and the therapist continued to express that they could keep Kitty a few more days if I was worried, because she obviously recognized that I was NOT happy. I finally told her flat out that I wanted Kitty out of there, because I felt they’d messed up her medications and I didn’t see a point in delaying getting them fixed.

When Kitty came out with her stuff, the therapist let us out of the building and the main gate and waved at us as she drove past us walking to our van. As I was sitting in the car, still fuming, I suddenly realized there was something really wrong with this discharge. It should have been more complicated than walking off campus with Kitty and her garbage bag full of stuff. While we were still sitting in I finally called the hospital and asked if it was really that simple. They asked us to come back in and fill out the discharge paperwork.

As we drove away, I realized that it wasn’t too late to call Kitty’s pdoc. The next available appointment wasn’t until the end of December, but by a weird fluke (or Godincidence as I prefer to believe) the appointment I’d cancelled for tomorrow (Wednesday) hadn’t gotten cancelled (I cancelled it because I thought she was going to still be in the hospital) or she’d had two appointments for some reason and I’d only cancelled one. So joy of joys she has an appointment tomorrow.

She was a little manic all evening, but seemed OK, especially after she’d found out she didn’t have to go back to school right away.

Wasn’t sure what to do about meds tonight. Gave her the Trileptal, and the constipation meds they hadn’t been giving her, but didn’t want to fill the prescriptions given to me by the hospital. The only Seroquel we have in the house is 300mg and she only needed 50mg so we skipped it.

Med Wash and Due Process

Not sure what this hospital's definition of "med wash" is, but I'm confused.

First, they kept her on Tril*ptal (mild mood stabilizer with few side effects). Fine with me. She's been on this med for over 5 years, and it seems to be a good one.

Then they said they want to put her on Ser*quel XR right away, to help with sleep. This confuses me, because she's been on Ser*quel before and it caused her to gain a lot of weight (70lbs in 6 months). Plus, I'm confused about the point of a med wash where you add new meds before the other med are even out of her system... but OK.

So today they call me and say they want to start her to Wellb*trin (an anti-depressant) to replace the Depak*te (a mood stabilizer). I'm OK with getting off Depak*te, we were in the process of switching her to Lamict*l anyway, but I don't get why they're switching from a mood stabilizer to an anti-depressant. So I argued discussed it with them. Apparently one reason they want her on Wellb*trin is to help with weight loss. I told them I thought she'd been on it before (but it could have just been Bear and I). I really want her on Lamict*l.

I asked if they'd reviewed her records, so we weren't recreating the wheel or switching her to the new doctor's favorite med cocktail for no apparent reason (has happened before). Of course they hadn't.

Why did I bother to sign consent forms everywhere?

I declined to give permission for the switch until they reviewed her records. Which they did, and I guess I'll find out the results tomorrow at family therapy.

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Finally heard back from the Advocate and Struggling to Stand was right, it doesn't matter that Kitty is not in the school district right now. The good news is I don't have to worry about what the school is going to torture her with while we wait for the due process hearing or mediation or whatever.

I did get the behavior staff notes for the last few weeks. It's hard for me to read because it's all about what I did wrong ("Mom brought her in late. Mom didn't call to say she was going to be late or wasn't coming. Mom didn't sign her in right. Mom took her home...") or only talking about things that imply Kitty's issues are minor or all at home ("Kitty was upset about something and wanted to talk - no detail on days when I'm pretty sure Kitty was upset about something that happened at school. Kitty said sometimes she tells Mom she feels like hurting herself so she can get away from the family and go to the hospital. Kitty wanted to call home, but I told her she was fine.")

Due Process

To clarify, we've filed due process, and fully expect the school to agree to mediation. My concerns are what to do in the meantime since Kitty couldn't handle the changes.

Actually, my concerns were what to do in the meantime. I got a call today from the new psych hospital. They want to do an almost complete med wash. This will probably take several weeks, during which time she's disenrolled from school and enrolled in the hospital's charter school and presumably she'll still be there.

So now I'm worried about:

• the fact that this med wash could make her completely unstable and swing back to irrationally hating me for loving the other kids and hating her.


• That she may be in the middle of it if/when we finally get approval for RTC


• that I won't find an appropriate RTC.


• That we can't proceed with the mediation/due process since she's not enrolled in the school, and therefore when she's released from the hospital we'll have to start all over with her suffering from the unacceptable lack of accommodations,


• that she'll be missing her annual IEP meeting where they're presenting the results of her new FIE (school version of a psych eval)

Half a Dozen Hospitalizations

Kitty was admitted to a psych hospital last night (this will be her 6th hospitalization since March). She's only been home 1 week since her last hospitalization.

After the most recent IEP meeting, the school has decided to punish us by not letting her call home anymore, and she isn’t allowed to leave the classroom and go to the Learning Lab if she’s feeling stressed and overwhelmed anymore (when she felt ill and went to the nurse’s office she was sent right back to class after having her temperature taken, which sounds fine, but during the last 4 IEP meetings it was agreed that Kitty goes to the nurse when she's feeling stressed and overwhelmed and needs extra support). They did let her go to the Learning Lab for additional instruction, but only if she had makeup work (she failed 2 tests this week).

Because of this she couldn’t handle going to school Wednesday morning (she LOVES school so this is a dramatic change for her), so we took her to the crisis center for an assessment, and they recommended hospitalization. The big problem is that I don’t think we can do anything to get the school to change this new approach and I don’t know what’s going to happen when she goes back to school (probably after Thanksgiving).

Yesterday we spoke to Kitty’s new Assistant Principal, and I think we're finding that a big reason the school is fighting us so hard about letting Kitty go to the Special School is because she's so good at wearing her mask. All the teachers not only believe the few times they see her giddy (manic and overstimulated) that she is actually happy, but also it's that she's a positive influence on the rest of the class and they want to keep her. She's quiet, likes school, gets her work done, understands the lesson, and is a good buffer between some of the more rambunctious students. I think the teachers are tired of having all their kids being tough, and Kitty doesn't let them see the effects of the stress on her. The Behavior Program staff probably are receiving a lot of pressure to minimize the behaviors they see (A "6" on a scale of 1 to 10 being labeled as "mild anxiety"!) No one seems to care that Kitty is being torn apart.

We’re still not receiving the Behavior 360 reports. I've asked our professional advocate what should we do? Should we start moving up the line to higher ups in the school district? Should I ask for yet another IEP meeting or Parent/Teacher conference? Should I write a letter demanding they go back to acknowledging she needs to leave the classroom if she’s stressed (like all our documentation states)? She has to go back to school (probably after Thanksgiving) and her next IEP meeting (her annual) isn’t until December 6th.

Punished

Monday was Kitty's first day back to school after being hospitalized (unless you count the time she was in the IEP meeting). Kitty came home upset because the behavior staff at school wouldn't let her call me. She had a substitute in math class today, and apparently they were learning a new concept, which stressed Kitty out. The sub didn’t catch Kitty’s subtle comments that she was feeling overwhelmed. So Kitty resorted to telling the sub she needed to use the restroom to summon the behavior staff (they have to shadow her every time she leaves the classroom).

Kitty requested to call home, but was told no. After walking around with the behavior staff for awhile, Kitty again requested to call home, but was told that The Crisis Plan said she couldn’t call home. This is new so she was confused (as was I, since this wasn't how I interpreted the results of the last IEP meeting).

One change that was added to the Crisis Plan was that if she left the classroom she was supposed to be able to go to another location and continue to receive her lessons taught by a special education teacher. She was offered the opportunity to work on math in the Learning Lab, but since it was a new concept and she didn’t have any paperwork to work on, she felt that the person in the Learning Lab wouldn’t be able to help her. So she said no thanks. The staff sent her back to class, even though she wanted to call me and to go home.

When she got home, very upset, I told her that next time she needed to tell the behavior staff that she wanted to learn in the learning lab if she left class (even if it was a new concept), and that it was OK to leave class for something besides having make up work. She can leave if she's feeling stressed and overwhelmed. I told her that the staff wasn't allowed to ask her if she felt like hurting herself, so if she did feel that way she really needed to tell them. Then I assured her that I'd talk to the school the next day and find out what was going on with not being allowed to call me.

I sent an e-mail requesting a copy of the new Crisis Plan and asking why things were being handled this way. I got no response, and Tuesday was worse. She was not allowed to leave when she was stressed, and was still not allowed to call me. She did leave class twice to do some make-up work in the Learning Lab later in the day.

When I picked her up after school, we went straight to her regular therapy appointment. She started off OK, but shut down almost instantly (spent most of the session with a blanket over her head, refusing to come out. Got her home and somehow managed to avoid a major meltdown at home.

Today she couldn't even handle the thought of going to school. On the way in I called to see if I could get an appointment with the new AP (couldn't), and by the time I hung up, she was begging to go to the crisis center. We went and she needs to go back to the psych hospital. We're trying a different one this time.

Also stopped by The Settlement Home to check it out, and it seems great... but they don't have any beds and probably won't until January. So still looking.

Good News/ Bad News

Nebraska finally responded on Monday that Kitty does NOT meet their requirements for residential treatment (in Nebraska she would only qualify for in-home therapy and wrap around services), BUT that they are going to assume that she has received all the services Texas is able to provide and have decided to provide funding...

BUT San Marcos Treatment Center (which was the place we'd chosen) is no longer a provider for Nebraska Medicaid so we have to find another residential treatment center (RTC),

AND they have to specialize in trauma therapy.

So far these were our next best choices:

The Center for Success and Independence

Devereux

The Settlement Home

Anyone know anything about them or a better alternative in Texas?

Urgent!! Edited

OK, I'm convinced! I will tell the school, NO!!!!!! THANKS y'all!!

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Anyone read the book "Night" (I think it's about the Holocaust) or "Of Mice and Men" recently? I've never even heard of "Night" and it's been forever since I read "Of Mice and Men." Please ask around!

I need to know by tomorrow if they're appropriate for Kitty, my suicidal/ emotionally disturbed teenage daughter, to read in Language Arts. Some of her triggers: suicide/ self-harming, feeling someone "deserves to die" because of something awful they did (guilt/ shame), domestic violence, blood and gore, hurting women or children, foster care, physical/ verbal/ sexual abuse, abandonment/ loss...