This blog is my place to vent and share resources with other parents of children of trauma. I try to be open and honest about my feelings in order to help others know they are not alone. Therapeutic parenting of adopted teenagers with RAD and other severe mental illnesses and issues (plus "neurotypical" teens) , is not easy, and there are time when I say what I feel... at the moment. We're all human!

Thursday, October 13, 2011

This vs That

He Said/ She Said

So we walk into the Principal's office and he invites us to sit down and asks how he can help. Then Hubby did something totally frustrating. He started at the beginning.

He started talking about how we came to adopt the kids almost 5 years ago. I don't think the principal knew much about us, but at one point he'd either randomly decided that we were trying to get the school to pay for residential treatment (not that we'd be adverse to it) or he really did know more about us than he'd/we'd thought, and let us know the school district hadn't paid for residential treatment in over 25 years.

Hubby and I have had many discussions about me interrupting him, talking over him, and taking over conversations. I'm always exhausted and therefore I apparently do this often. I do know that my short-term memory is shot so I tend to speak my mind before I forget it!

So I was nervous about taking over the conversation, but I felt we were headed down a rat hole with this particular conversation, so I jumped in anyway. I explained that our primary concern was the safety of Kitty, particularly during unstructured times like in the hallways and a lunch. The principal assured me he'd look into it. Not holding my breath that anything will come of it. (Ironically Hubby describes this conversation differently and felt it went well. He told Grandma the main reason he'd initiated the conversation was because he felt I was overwhelmed and he wanted to "fix it."



We've always known that TX Medicaid stinks when it comes to providing mental health services (there's a reason we're like 48th in the country when it comes to mental health services). So we delayed the kids' adoptions for months to have residential treatment written into the kids' adoption subsidies. Many months ago we tried to get Nebraska Medicaid to pay for intensive outpatient/partial day hospitalization (not covered by TX Medicaid) and they absolutely refused because our agreement was for residential treatment (RTC) only.

Now we had two psychiatrists stating she needs RTC, no private insurance to confuse the matter, and every RTC I had approached (given tons of numbers by TX Medicaid - none of which actually accepted TX Medicaid and most of which weren't actually RTCs) looking for someone who took TX Medicaid, had stated that no one took the type of TX Medicaid we had... so I figured we had NE Medicaid in the bag!

I called them and discovered that they'd had a major revamping of their system. I was told that NE wouldn't even look at whether or not she qualified for RTC unless she already had NE Medicaid. The only way she could get NE Medicaid was if she was physically in Nebraska and no longer had TX Medicaid (earliest that could happen was November 1st. Then she had to show that she was severe enough to need RTC, but capable of responding to treatment in 90 days... and we decided that the price was too high to pay.

In the meantime I was still trying to get Texas Medicaid to put in writing that they wouldn't provide RT. We managed to get a case manager and I met with her today. She seems to think she can find an RTC. Now I'm worried that she will! Then we'll be stuck with whatever program they scrounge up.

My friends have only recommended 3 places in Texas as being semi-decent. One, we've already sent the kids to, and it's great for diagnosing and proper medication, but stinks for therapy - which is what Kitty needs. One has a mixed review, basically it depends on which therapist you get. Both of these accept NE Medicaid. The third was the most recommended, and I've been playing phone tag with them for over a week. No way TX Medicaid would pay for the the first and last, and probably not the second.

Just to make things more complicated. Nebraska called last night. They've decided to eschew NE Medicaid and provide funding from another source. Which means we'd keep TX Medicaid for any medical health issues that crop up, and can choose (within reason) the treatment center.

Now I have to wait and see what RTC options the new TX Medicaid case manager comes up with tomorrow (assuming that she does), and then call all of them to see if they're valid options. If not, then maybe we can see if Nebraska will step up and we can go straight to the RTC we prefer.

Have been talking to Pre-pa*d Leg*l so that when we're ready we can charge forward when/if we need them.



Met with Kitty's psychiatrist today. We talked about changing Kitty's meds. I want to try Lamict*l because I've heard it's often a "miracle" drug for kids with bipolar (it certainly was for Bear), and I've also heard it's beneficial for people with brain injuries (which both my kids have). We tried Kitty on it many years ago, but she's prone to hives and Lamict*l is associated with a fatal rash, so every time Kitty got hives they'd yank her off the Lamict*l until they subsided. It takes forever to work up to a therapeutic dose, so I got tired of putting her on and pulling her off.

The new pdoc doesn't like Lamict*l, and feels that Kitty's issues are not med based so doesn't want to make any changes. I keep hoping that since Kitty was stable for over a year, that maybe there is a med out there that would help. The pdoc said that while she doesn't know Kitty very well yet and Kitty's not old enough, that she's seeing a lot of traits of borderline personality disorder. This is not a surprise to me. Believe me, we see it too!



Behavior testing is finally done (supposedly), and now the school psych has to write it up and have it ready for presentation at the IEP Meeting in a week and a half. As far as I can tell she didn't talk to the guidance counselor yet.

After complimenting me on the level sheet and chore charts, The TX Medicaid case manager did suggest that I apply myself to a thorough list of all the reasons Kitty should be in the special school for emotionally disturbed kids that we've been trying to get her into (the one that Bear is in part-time). Yes, Beemommy this is the small campus for kids like Kitty! So now I need to find the time to sit down and do this. I have it in places, but need to make sure it says what I need to say clearly and logically.

I got the letter from the psychiatrist at the hospital, which I think will definitely help us with getting Kitty in the special school.

“Due to three separate inpatient psychiatric hospitalization at the Hospital in 2011, it is recommended that Kitty be considered for admission into an alternative education environment. Consistent with her behavior at the hospital, Kitty may present with little psychological distress while at school. Nevertheless, providing an educational setting that minimizes interpersonal and environmental stress may help Kitty regulate her mood and behavior in all phases of her life, at home and at school. Please accommodate Kitty’s academic and social needs per the family’s request.”


Johanna said...

You've got a real name in the quoted part of your post (I'm assuming). Praying things will work out for Kitty. You are an amazing mom!

jwg said...

I was going to say what Johanna said but I got really confused because that's my name and for a split second I thought I'd already commented and forgot! There aren't that many of us.If nothing else, this mess is proof we need a national healthcare system and some states are just too mean to be allowed to decide on their own Medicaid.

Anonymous said...

Yes, you have TMI in the letter at the end.
I think the doc has a point about not medicating, but Kitty is on so darn many meds it isn't like he can easily tell what is med side-effects and what isn't! Also, I think an MD should seriously look into Kitty's hormone (and thyroid) levels as things went haywire along with a certain level of physical maturation. Which of her meds may be affected by hormone levels? (Tegretol would be, I'm sure there are more.) And there is the ever-present gastro problems -- has any doc run a check on her vitamin and mineral levels in case she has bad problems of mal-absorption? That could cause mental difficulties too. ... so yes, it might look like borderline, but that doesn't mean that there aren't things that can make it worse.

marythemom said...

Oops! Thanks for the catch guys.

Kitty takes 2 mood stabilizers (Trileptal and Depakote)
1 anti-psychotic (Abilify)
1 ADHD med (Focalin)
and some OTC supplements (melatonin for sleep, prenatal multivitamin - because it doesn't have citric acid which she's allergic to, Fish oil, Super B Complex, Senna laxatives for....)

2 mood stabilizers is pretty standard treatment for bipolar. The Abilify is the med we added that got her stable 2 years ago when she was hospitalized a lot. Everyone has pretty much said that her meds are exactly what they "should" be, but she's not stable so it's probably trauma based. (Bear takes twice as many meds so it makes me laugh when people say she takes "too many.")

Her thyroid levels are OK, and we actually did an ultrasound on her thyroid today. Will get results Wednesday or later.

Kitty started menses at 12. She's 16 now and while I'll admit she's still hormonal, I do think her hormones should be fairly stable by now?

Would her regular doctor check vitamins and mineral levels? Her current doctor isn't much help. This is the one that told me Kitty couldn't be having night terrors because she's too old!