[usehername]

One year ago, my daughter had a psychotic break. It was not her first, but was the most severe. She couldn't sleep for 2.5 MONTHS prior to this event. It was right around the one year anniversary of my mother's death. My mom was her other parent her entire life. I came home from work one night to find her pretending to sleep with a knife under her back. I asked her what she was doing with the biggest knife in our house and she said she was trying to protect herself from the people she heard in the hallway (we live in a single family home). After that, there were no coherent sentences, no coherent thoughts. She spoke of voices, visual hallucinations, etc. I talked her into handing over the knife, and gently escorted her to the car to go to the ER (bad choice - they SUCK).

After several days of boarding (INVOLUNTARY, due to the severity and HI), she was finally examined by a doctor, who said she was in total psychosis (DUH). He then got many things wrong in his report, but that's another story... I requested she go inpatient for her safety, and the safety of those around her. The hospital agreed, since they had to keep an armed guard outside her door the entire five days she was there and escort her to and from the bathroom. She was not allowed to leave her BED for any other purpose. She did not sleep in the hospital. I suggest they try seroquel. They gave her NOTHING (yet had ZERO issues giving her a B52 when she was in pain from acute pancreatitis several months later).

She was denied inpatient because someone at optum decided it might be too traumatic for her... which I get... I work inpatient. But what she was going through WITHOUT meds was FAR more traumatic. They set her up with a WISe team (intensive outpatient visits at home), who ransacked my home before allowing her to step foot in it, locking up anything that could possibly be used as a weapon (the voices were telling her to kill everyone). She occasionally visits her father. They did not go to his house. They told him to lock up sharps (found out later that he didn't lock up anything, including GUNS).

It's been over a year... my daughter saw the psychiatrist ONCE, right after being released from the hospital. She was still in psychosis (obvious to ME). She was HIGHLY paranoid (which the doc observed - you'd think that would be a clue, no??), unwilling to talk, and expressed no understanding as to why anything needed to change, and no desire to take meds. She STILL had not slept. I told the doc my thoughts on all this privately - she is delusional. This is not like her at all. After she sleeps, she will be a different person. She did not listen. Instead, my daughter's file shows that she wasn't interested in addressing her issues medically because she didn't see the need to. So the psychiatrist has not been willing to see her since.

As soon as she slept (for two weeks straight, as I'd predicted), she begged to go back in, saying she was sick of feeling like this, sick of hallucinating, sick of hearing things, sick of never being able to sleep right (it's always nonstop or not at all) and sick of not being able to get anything done or lead a normal life because of her symptoms. She begged to go on meds. I knew this would happen, and TOLD the shrink this world happen.

The turnover on our team has been ridiculous. Each therapist says exactly the same thing. "She just needs a bedtime routine". *****, she's had one for 14 ****ing years. Changes NOTHING. They make me try it, and after about four months, realize it's clearly a chemical problem. DUH.

Family history:
Mom's side
Great grandmother - Bipolar 1, dx 19
Grandmother - Bipolar spectrum, dx ?
Mom - Bipolar 1, first episode @ 8 (me)
Aunt - Bipolar 1, first episode @ 9
Dad's side
Dad - something's definitely wrong
Uncle - Bipolar 1, on DISABILITY for life, dx 12

We saw her primary a few months back. She said, "my god, she's STILL not on psych meds?? Why the hell not?? Look at this!" I explained what was going on and she literally said, "**** it. I would normally never do this, but she NEEDS HELP", and then put "mood disorder nos" on her chart to point them in the right direction. She's been treating my daughter since she was a baby. She's watched as she had to be held down by SIX people for routine vaccinations. Every single time.

She has been BEGGING everyone to see her psychiatrist again for over 11 months. Wtf is wrong with them??

I spent my entire day (including during work, at an INPATIENT PSYCH WARD) calling supervisors. My calls go unanswered, just as her therapist's do. Her therapist recently told me that as a back up plan I should get her set up at the agency I work at (since there is always a minimum two month wait for shrink appointments) because her psychiatrist says she's only willing to see her if she PROVES she's ready to commit to treatment by doing:
1. Basic self-care
2. Sleeping a reasonable number of hours every night
3. Eating at least two meals a day
4. Going on regular outings at least once every two weeks

#4 is almost covered, because I always drag her somewhere IF I can wake her up (she's like waking up a coma patient - I have literally jumped on her for four hours before and the only response I got was her punching the wall after four hours. Then I had to take her to the ER for xrays when she finally woke up because she hits HARD).

When she was told of this list she said, "if I could do all that on my own, why the **** would I need a psychiatrist and medication?? Hello!! Wtf is wrong with her??". Me and the therapist agreed.

Wtf do I do? This isn't even the first time this has happened... the last one put her on adderall (caused psychosis, just like I told him it would) and never listened to a damn thing I said. She needs a MOOD STABILIZER. How much more obvious could this be??? I'm at a loss here, and frankly, I'm ****ing pissed...

First of all, I'm sorry that all of this happened. She deserves better treatment and better doctors than those useless idiots.

Adderall caused me to hallucinate when I took too much at once, so I completely understand why you don't want her on Adderall. I had taken 40mg instead of my prescribed 20mg, and I was scared beyond belief. (Now I can take 20mg and only become hypo, which is bad because I abuse the med sometimes. I can't blame my pdoc for not prescribing it anymore.)

Is there any way to take away her Adderall (assuming she has any left)? If I can't be trusted with it, I can imagine it might be hard for her to give it up too. (I don't mean any offense; just being honest from my previous experience.)

Can you try to get a skype psychiatrist? It sounds like the psychiatrists in your area aren't any good.

[usehername]

She not on ANY psych meds... that's the problem. She was on the starting dose of adderall for a few weeks ONLY when she was about 9 and it was so bad... she was completely psychotic by day three... she is like me that way... nothing can slow her... that B52 didn't even knock her out.

Oh and she's Medicaid, so we're very limited in where we can go, but I'm seriously considering skipping a bill to pay a private doc... if there's no wait time, I'll do it. I know my agency will treat her well.

[Ocean Swimmer]

That's what I'd do. Get her private Pdoc help till she gets on the right meds. Then get long prescriptions 90 days with refills.
Good luck. I was lucky. My folks had good insurance and it was decades ago. ( my first episode)
But now Help sucks for everyone. Most people inc me have to pay Pdocs out of pocket. The better ones no longer accept any insurance. It's terrible.
There maybe a sliding scale Pdoc too. Ask.

[usehername]

That was what I was thinking because that's what I had to do... I'm Medicaid, too, but pay my shrink out of pocket because I went through every shrink in the county that takes Medicaid and they all sucked... they all had this you're not locked up, so you must be functional attitude...

Unfortunately, I can't seem to find a shrink that takes kids! It's bizarre... I've been looking for days now... I'd rather pay and have her be seen by someone good who will listen ASAP, but a lot shark won't accept cash, either... the whole system is so messed up...

[Icare dixit]

How old is she now?

Generally doctors don't want to hear what they should do. It can cause opposition even when all the things you propose are the right things to do.

[Victoria'smom]

Is there any children's hospitals around you? or universities? How are they handling her at school? I would call the pediatrician and ask if there's anything she can do to help tell her that your daughter still isn't on meds and no one will see her. They'll sometimes give medication in an emergency. Be willing to spend the whole day driving if need be to get into ANYONE. Don't say you have a child say your daughters 14. 14 is usually the cut off age between adult and child psychiatrists. If the pediatrician can't do anything. Next stop is urgent care. If urgent care wont do anything back to the ER. If your calling the dr offices staff may just be saying no off handedly. If you do finally find an appointment it'll be 3+ months out though. How often does she see her therapist? I'm sorry this is going on.

[Shazerac]

The insurance situation for mental illness sucks the big one !!! I'm so sorry you're going through this with your daughter. I have insurance, but I have to pay out of pocket because I'm only allowed 4 visits a year on the insurance. If your daughter is an adult you have a incredible rough ride ahead of you. My heart goes out to you. My daughter is an adult with BP1 with psychosis. She left home because I was the spawn of Satan. She gets violent and attacks me. I finally had to refuse to let her live with me because I was afraid she would murder me in my sleep.

My heart is breaking for you and the difficult road you are facing. With all the new "patient rights" laws it is next to imposssible to force your child to get treatment or insist that the doctor gives her meds. If she says she doesn't want to take them you are facing a brick wall. Keep fighting to get her the help she needs but don't forget to take of yourself.

This is very saddening to me.

I my region, the waiting list for adolescent psychiatry is 18-24mos.

My neice attempted SI a year and a half ago. She has scary paranoid delusions and I think psychosis. I think she is schizophrenic. The only psychiatrist she has seen in all this time was the one she saw in the hosptial. Instead, she sees a psych nurse monthly.

[Victoria'smom]

psych nurses aren't that bad if you can get into one. They're usually more available and have masters or doctorate degrees in psych nursing.

[usehername]

Originally Posted by Icare dixit

How old is she now?

Generally doctors don't want to hear what they should do. It can cause opposition even when all the things you propose are the right things to do.

I agree. I work in healthcare with them all day. I was careful about my phrasing, limiting it to describing my prediction for what my child's future behavior would most likely be like based on her pattern. Even with the doc that gave her adderall, I think all I said was, "I'm a little afraid of this because the first time she took prednisolone, she had a psychotic reaction". This one insists that her sleep problems are behavioral and I can't understand why... we were just asking for another appointment. She told us to wait several months and let the team gather info, which we did, with two different teams... now it's been 11.5 months and no psychiatric treatment. That's when I got pissed. Oh and she's 14.

[usehername]

Originally Posted by Miguel'smom

Is there any children's hospitals around you? or universities? How are they handling her at school? I would call the pediatrician and ask if there's anything she can do to help tell her that your daughter still isn't on meds and no one will see her. They'll sometimes give medication in an emergency. Be willing to spend the whole day driving if need be to get into ANYONE. Don't say you have a child say your daughters 14. 14 is usually the cut off age between adult and child psychiatrists. If the pediatrician can't do anything. Next stop is urgent care. If urgent care wont do anything back to the ER. If your calling the dr offices staff may just be saying no off handedly. If you do finally find an appointment it'll be 3+ months out though. How often does she see her therapist? I'm sorry this is going on.

She sees her therapist at least weekly, and a peer counselor weekly. We were informed that her psychiatrist was not willing to within with her, basically... so after many hours of overnight searching and emailing, I found one who said wow I wish I could help, but she's too high acuity for me... I'd put her inpatient. But you don't have the ability to do that, and if you take her to the ER, they'll probably board her again and so nothing. Here is the name and number of someone I think can help you. She's really good. So I called and explained every detail and they said they would definitely help her, and they're sliding scale. They gave her their soonest available appointment.

She is in WAVA because she can't attend regular school. She's failing Avery's the board right now. It was interesting listening (eavesdropping, really) to her explain why to the GAL today. She described her symptoms in great detail - something she has never really done coherently and all at once today... usually, you have to pull the information out of her slowly in bits and pieces. Today it was in paragraphs, and she seemed to actually remember her manic phases somewhat, which is really unusual. I could hear her describing what it's like to live in her head... her symptoms are definitely worse than mine were at her age.

There is a children's hospital with a really good inpatient unit. It's an hour and a half drive. The next time she has a psych emergency - even if it's just not eating for two or three days because she's been asleep, we will suddenly find ourselves in the area. We will not be returning to the local ones.

[usehername]

Originally Posted by Shazerac

The insurance situation for mental illness sucks the big one !!! I'm so sorry you're going through this with your daughter. I have insurance, but I have to pay out of pocket because I'm only allowed 4 visits a year on the insurance. If your daughter is an adult you have a incredible rough ride ahead of you. My heart goes out to you. My daughter is an adult with BP1 with psychosis. She left home because I was the spawn of Satan. She gets violent and attacks me. I finally had to refuse to let her live with me because I was afraid she would murder me in my sleep.

My heart is breaking for you and the difficult road you are facing. With all the new "patient rights" laws it is next to imposssible to force your child to get treatment or insist that the doctor gives her meds. If she says she doesn't want to take them you are facing a brick wall. Keep fighting to get her the help she needs but don't forget to take of yourself.

Yes it does!! I think you're dealing with worse than we are... I'm sorry.

My daughter is 14 and has very obviously been battling bipolar since she was 7 (primary spotted it, but wanted to leave it up to a psych doc to dx). She is graduate to get on meds. She sometimes asks for mine for relief, and I've gotten to the point where I hide them. I don't blame her at all... when my mother went through this with me, she couldn't stand to watch me suffer and just gave in and gave me hers (she knew a lot and was giving "good enough" meds - mainly risperdal when I was getting psychotic or a sedative here and there when I could stop going), but my life is under a microscope with anti-med family and i couldn't bring myself to do it... besides, one thing she truly needs is an AP and I don't have any since I can't afford mine.

It sounds like things are very strained between you and your daughter... that must be so hard... and heartbreaking... I used to have nightmares about my unmedicated grandmother killing me when I lived with her, so I can relate there. That's terrifying. She would only take other people's meds.

[usehername]

Originally Posted by Miguel'smom

psych nurses aren't that bad if you can get into one. They're usually more available and have masters or doctorate degrees in psych nursing.

I agree. I think that's what we found. Either way, sounds promising... female, young, able to prescribe... meets her needs. She absolutely refuses to deal with men (maybe because of her father??) with very rare exceptions and has a hard time opening up to people who are too much older than her (she is 14).

[usehername]

I'm sorry if I'm not responding to comments all the way... I cannot work this app at all.