DD1 is deemed NOT stable enough for release and medication nightmare

[keista]

So I had 3 more calls this afternoon. Nurse, social worker and nurse again.

Nurse called to tell me the recommendation of the psychiatrist - add Celexa. Ah, isn't that an SSRI? I REALLY DO NOT THINK THAT IS A GOOD IDEA. And I went over DD1's reactions to the previous SSRIs, AGAIN, with the nurse. Yes, but psychiatrist says that it works very well with the Abilify. Ah, but I've been saying that I DON'T think the Abilify is doing ANYTHING for her and I explain how it does not seem to be addressing any of her ORIGINAL symptoms from two years ago. (yes, I was so hopeful before that the Abilify would do wonders, but it hasn't done a thing) Original symptoms are all back and then some PLUS what happened yesterday. Should we maybe take away the Abilify? Well, you did tell us to give it to her. Ah, yeah because I AM NOT SUPPOSED TO STOP ANY MEDICATION WITHOUT DISCUSSING IT WITH A psychiatrist, and I have not yet discussed this with any psychiatrist, so, what does the psychiatrist think? She'll convey my concerns and call me back.

Then the social worker calls to let me know that DD1 has been deemed NOT stable enough for release. Yay, I was relieved. And they already scheduled a follow up visit with her regular psychiatrist for next week (protocol). She brought up the medication recommendation, and I AGAIN started explaining my concerns. At that point the nurse was trying to call again (don't' these ppl talk to other?) So I finished up with social worker, and got transferred to the nurse.

Nurse said she shared my concerns with the psychiatrist, but the recommendation stands, so, will I allow the order? REALLY? then she read off the list of medications ordered which include Tylenol, mylanta and something else - all only if needed. What about her melatonin? Well, it's not ordered, and the psychiatrist is gone, but we can request it in the morning. WTF? So, my mind is racing! My poor baby is NOT going to have a good night - yes, sadly it may work to my and her advantage. Then she asked again if I would allow the celexa, and I said NO. What about the Abilify? Well, what did psychiatrist say about my concerns of the Abilify NOT doing anything for her? Nothing, psychiatrist's ONLY recommendation is BOTH Abilify and Celexa. My mind was still racing so I asked what happens if we stop the Abilify. Well, her vitals will be monitored, and she's in a group where she must be physically seen by a staff member at least once every 5 minutes. And what are the withdrawal effects from Abilify? Restlessness, anxiety, etc. Oh, ALL the symptoms she's having while ON it! OK, then NO. Do NOT give her the Abilify. I figured if it gets REALLY bad, then at least she's where she can have 'pros' observing her. Unfortunately I already feel like I'm getting the crazy, difficult Mom rep.

I put a call in to DD1's regular psychiatrist and left a message about the crisis unit and that I did not agree with their medication recommendation. Also that I had been 'procrastinating' making an earlier appointment to discuss how the Abilify didn't seem to be doing anything and that I told psychiatric hospital to stop that medication as well. There's still a little time left for regular business hours, but I probably won't hear back until tomorrow.

DD1 can call this evening at 7. I think she will and hope she does. If they keep her past tomorrow, I'll get to see her Saturday. Visitation is only Sat, Sun and Wed for 1 hour. It's killing me to think of what a tough night she's gonna have with no melatonin. As it is, the last few nights she's needed to take a second dose because she wasn't asleep within an hour of the first. When she calls, I need to remember to keep my 'mom mouth' in check, and NOT tell her to behave. I won't egg her on, but will remind her that she needs to let them know when things are bad for her.

I'd like to know what anyone with this type of experience thinks of all these 'relay conversations'? Does this sound like normal protocol? This unit is NOT for long term care, ONLY crisis stabilization.

 

[Ktllc]

I don't have experience as far as mental health, but I do with "regular" health issues (severe enough my DS was hospitalized, had surgical intervention, etc..). RELAY CONVERSATIONS seem to be the norm in the american health system. To me, it is EXTREMELY UNEFFICIENT and FRUSTTRATING.

Like you said: don't this people talk to each other???

Try to stay very calm and try to document your conversations (day, time, who and topic). If you feel you are not going anywhere, pick the person that is "most" incharge and relay all of the conversations and information through a letter or an e-mail . If it is in writing, it just has more power.

I don't believe you can fight the system (or should waste your energy on it right now), but you can make sure it runs a little bit more efficiently and make people accountable. Try also to stay very formal.

 

[JJJ]

Oh, yeah. That sounds so typical. Be sure to keep good notes on who you talked to when, what they said, and what you said.

 

[confuzzled]

::

we has a similar psychiatric hospital experience...right down to the suggested ssri, that was ordered by the dr hours before, being not given because no one told the nursing staff.

its horrible for both of you, and yes, its frustrating dealing with hospital staff when you are frazzled above and beyond the frazzling they give you.

i can tell you (re: melatonin) that the mantra in ours was literally that they keep kids up as late as possible so they *will* sleep (and NO, my 10 year old could NOT go to bed at 9pm after being admitted at 2am).

unfortunately, it IS all a necessary evil--your dd1 needs treatment, and beads rattled that she gets it. i am relieved to see they arent going to dump her out--i hope they get on the right track asap.

oh, and ps: we are getting ready to dump abilify too, in a slow wean--its not touching depression/anxiety and the side effects just hoover. we DID give it a fair trial (2 *#&^$ years!) with increases, so its a fair assessment on our part that its not doing squat.

 

[Marguerite]

Is it possible to say the following to the nurse?

"While I'm talking to you, and then you're going to talk to the psychiatrist, then you will get back to me - wouldn't it be faster, more efficient and more effective for the psychiatrist to give me a quick call? Or better yet, when can I make the call to psychiatrist, or drop in to see the psychiatrist personally? I want to expedite this to assist you to help my child. Better communication has to make your job easier."

Always find an angle that makes their life easier.

Marg

 

[keista]

I just got my call from her. She sounds good. I asked if she was actually TALKING to staff and letting them know what's going on with her and in her typical pre-teen manner got a 'Yeeeeeeeeeeeeeeeeeeees Mom." She is aware that this is the best place to get the help she needs/wants. I'm very glad I "prepped" her for it back in the "creepy" episode days.

She was very excited that she got to try chocolate mousse for the first time. It was delicious! Staff is nice, other kids are nice.

Marg, I might try that angle depending on what transpires tomorrow. Like Ktlc mentioned, it seems to be the standard protocol in the US health system - maximize jobs, maximize patient cost, minimize patient services. And yes, I'm keeping my call log.

 

[HaoZi]

That sounds like very limited visiting hours. I visited Kiddo every day except one while she was in to get stabilized. She'd had a bad reaction to Celexa followed by a worse reaction to Risperdal. First call the suggested medication was Celexa and I nearly hit the roof. Needless to say my "No," involved a few extra not too nice words. Ours also had a reasonably early bedtime (unless you have a kid that doesn't sleep without their nighttime medications, y'all know what I mean). Seems not too parents at ours visit very often or call too often, and my concerns got a good reception from the staff (never met the docs even once, I have a lot more respect for the staff needless to say!). I called every night to talk to her or check on her after visiting, too. I didn't sleep until I knew she was sleeping, even the night she really went ballistic and had to be sedated.

It's a rough time for everyone involved, hang in there.

 

[keista]

These visiting hours are almost as limited as the ones for the county jail - not very comforting. From the conversation I had with the social worker, I got the impression that most patients there don't get many visitors. Hmmmmmmmmm could it be that it's because the hours are so limited??????

Sorry about your Celexa experience. I don't feel so bad now, at least for DD1 it was a NEW SSRI being suggested. What is with these psychiatrists?

Yup, hanging in here. think I'm gonna go curl up with a DVD I got for Christmas, but haven't had the chance to watch yet.

 

[JJJ]

If you want to see her more, be sure to schedule family therapy on a day that doesn't have visiting hours.

We rarely visited Kanga when she was in the psychiatric hospital. We needed the break from her cause we knew they'd be tossing her back to us even though she was still unstable and violent. Some of the phosps had the limited visiting hours, others did not (heck, one you could be there 8am-8pm every day as long as you either sat in your kids room or in the lobby during group therapy).

 

[keista]

So, they released her first thing this morning. I had to call them back just to make sure this was correct. Why was it yesterday she didn't see the psychiatrist until after noon, and today it was before 8? Regular docs weren't in, the 'subs' come in early before their 'regular' jobs.

Oy. So she's home and BORED again. She was quite bummed when I told her no going to friends for the next week (I'm bummed too, the friends keep her from being so BORED)

So far, so good. Keeping fingers crossed that withdrawal from the Abilify doesn't cause any further nightmares.

 

[BeachPeace]

Been thinking about you and hope that things are calm today.
Blue has been on Abilify for 2 years and it seems that is not as effective as it used to be...? Hope that she tolerates the withdrawal and you are getting some rest.

 

[TerryJ2]

Arrgh! How frustrating! I'm glad you were able to talk to her on the phone, though.

 

[keista]

Thanks Beach and Terry. The "boredom" continues. she woke up this morning, ate breakfast and started in with the 'boredom' litany I'm getting better at tuning it out.

Day 2 of stopping Abilify - fingers still crossed.

 

[jennd23]

How frustrating. Did they say why she was released? If She's bored and willing maybe let her learn a new craft to keep her busy?

 

[keista]

How frustrating. Did they say why she was released? If She's bored and willing maybe let her learn a new craft to keep her busy?

Oh thanks for the laugh! I'm sorry, you probably haven't read some of my older posts. This child is always looking for something NEW to do. I introduce a new craft, toy, game and she jumps in does/plays with it, and then she gets bored and needs to move on to the next thing. When we come across a "good" activity, she'll engage in it for a few hours and then we start all over again. It's been non ending. We go to the library and get books (her suggestion) she'll start the book and never finish - it got boring. Nope, TV and DVDs are MUCH TOO BORING. Been going on for months now.

She does come up with new suggestions and ideas, but they all cost money. Not much, mind you, but you add all the stuff together, and, well, it all adds up. A beading loom, origami paper, duct tape, cold cream - these were all requested today as supplies or ingredients for craft projects. If I thought for one nanosecond that any of these would entertain her for a whole day, I would buy them in a heartbeat. Reality is, nothing satiates whatever it is that she's feeling. I'm flat broke from "indulging" the boredom. I did it at first a few months ago because I figured it was a result of the medication change, but If I keep 'indulging' now, that's almost exactly what it is - indulging.

We've been dealing with this 'extreme' boredom since the beginning of May when we started Abilify and got her off the Paxil. It's one of the reasons I'm getting her off the Ability - she was like this years ago before I ever started her on the medications - which means the Abilify is doing nothing for original symptoms. Yes, I consider it a symptom. It's a mix between depression and anxiety. She cannot find joy, but NEEDS to do something, but cannot find what that something is that will bring her joy.

Oh, they released her because she was deemed "no longer a threat to herself or others and she was not hearing voices." WTH????? I asked if she had said she was, they said, no, that is their standard guideline for release so it it put down whether it is relevant or not.

 

[jennd23]

Oh I see. I was thinking if she could find a project to keep her occupied it might help but I wouldn't want to constantly indulge either.

Scary how easily they seem to release these kids.