Not sure what to do now

AnnieO

Shooting from the Hip
I hope they take your warning, too. And I really, really hope they figure out what to do.

Her behavior may get much more bizarre off the Intuniv... Or not. I know that Onyxx got weirder and weirder on certain medications - that she was cheeking (so probably not the medications, but who knows). During her psychiatric hospital stay, things were going okay... because they checked for that.

Hugs - and rattling beads, praying, and all body parts crossed for you and her...
 

totiredtofight

New Member
thanks everyone for the kind words .. since finding this site i no longer feel like I'm alone or the only one that is going thru this .. it is still really hard to deal with all this without crying on a daily basis but you guys are helping give me the strength to keep fighting FOR my child :sigh: i only wish i had found you guys four years ago when all this started
 

susiestar

Roll With It
I fully agree that you need a TON more communication, but doing it by phone is hard for them also. Try not to take being watched so personally. I had NO clue what other parents were like until I saw some in the lobby before visiting hours and then when the staff knew me they said a few things that let me see htat MANY, actually MOST of the kids had parents who were as mentally ill as they were and the parents could be even more dangerous.

Given the way she attacked teh staff during her meltdown, she really NEEDS the 30 days. This MUST be gotten under control or someone is going to be hurt VERY badly and then she is going to be in juvie and then in jail or prison. Those are NOT places where seh will get help or get better - just read some of klmno's threads about how her son has been since he went to juvie almost 2 yrs ago. This MUST be controlled ASAP because otherwise it just is not safe to have her at home. She is going to seriously HURT someone and that damage will be terrible for her and for the rest of the family. I know there are problems with this psychiatric hospital, but having her at home right now iwll NOT give her ANY of what seh needs so that this can be figured out and helped.

You need to start applying honey to the staff. You, and your children, NEED them to help. OF course tell them of bruises, etc.... - in email or letters is excellent as you cannot visit in person. Keep copies and make sure you get a fax confirmation or a read receipt from email or send them certified with return receipt so you ahve a paper trail of telling them things. Once they know you are not causing the problems and you want to help in any possible way, they will likely warm up.

I am not surprised that they didn't see anything until now. Five days seems like a lot but our kids do something called "honeymooning" in new situations. They will behave well and try to make people think that the parents are the problem and they are just wonderful and don't know why they are there. They go along, behave, and cause no problems. Wiz honeymooned for over a MONTH. It was a fight to keep him in there and he did it on purpose (he was 12). The only reason he wasn't released then was because I did something that felt awful to me but was the best for him.

I triggered him into raging during a therapy session. I wasn't abusive but I confronted him with what he had been doing, various things we found - like knives stashed all over the property under bushes, in trees, even hidden in loose rocks in a low garden wall. I didn't let him con the therapist the way he had before - I flat out called him a liar when he said that he wouldn't hurt Jessie ever, that I imagined it, that we abused him by hitting him with sticks to cause cuts to make it look like he was hurting himself, etc... The therapist and I had a good relationship by then - she saw me as a parent willing to do ANYTHING to help my son have a future that did not include jail or something similar.

After he spewed his hate and rage out and the session was over I went to the bathroom and vomited until I was puking up blood. It was THAT BAD. Then next week he brought a list of all he had done to Jessie. It was another horrible, hideous, would not wish that on anyone ever session that I went and vomited after. I had NO CLUE that he had done those things to her. She confirmed them in a session with her therapist - who was also shocked beyond belief. Most of the things were done while my mother or father was "supervising" them or at night after we were asleep. We lived with my folks because husband was in grad school but it became crystal clear that supervision of the kids did NOT mean the same thing - esp because my mother felt Wiz could do little wrong and Jess was the cause of all of his problems. She never said it outright, but every conversation about the problems ended up with her pointing out how jess "abused" wiz. Pretty much by being born and changing the dynamics of the family what how she abused him in my mother's words - she took the attention and $$ for things away from him. It is why Jess doesn't want to do much with my mom very often. Jess loves her but won't accept that blame - ever.

It is early days there. Your other difficult child would blame you just as much for whatever went on if difficult child 2 was home. He doesn't have a vote in her healthcare. He is not the parent. period. Ignore him or tell him if he doesn't stop it you will remove his possessions. If that works for you. DOn't bite off more than you cna handle or say things you can't or won't do. Ask him how he would do it different - and if his way was so great why doesn't he go ahead and move out and support himself and prove it?? Or avoid talking about it with him - whatever you can handle at that time.

((((((((((hugs))))))))))

This is a super hard time, but in the long run it will help. You just have to figure out how to work the system that she is in. Communication is the key there.
 

susiestar

Roll With It
Also do NOT let them convince you she had conduct disorder yet. At nine she is WAY too young for that diagnosis. My son was evaluated and condemned to be the "next Hannibal Lector" by a social worker who visited him shortly after our confrontation. In reality his is an Aspie with Obsessive Compulsive Disorder (OCD) focused on violence at that time. It sure LOOKED like he was a monster with no feelings for other people, but it wasn't the truth.

There is a reason to not diagnosis conduct disorder before 18 - because kids are still developing and can make HUGE changes and turn-arounds. So don't get too down at this early stage. I know it isn't easy.

also use time with her out of the house to do special things with the other two - esp the youngest. He needs to know it isn't his fault she is like this - she very likely has done horrible things to him and forced him to hide them from you (very common). So let the school counselor know what is up and let her work on these issues too.
 

totiredtofight

New Member
well the psychiatrist just called back .. difficult child 2's meltdown is reaching the 2 and a half hour mark and they are wanting to sedate her with an emergency dose of respidal ( not sure if i spelled that right) .. funny you say that susie because it was mentioned in her treatment plan that her homicidal thoughts be addressed ...i dont know much about the respidal ... so any insight on it would be helpful although he did say that he is not suggesting it long term at this time .. but that could change .. her meltdowns have always been long i have had to restrain her myself for 4 hours the longest meltdown was 5 hours .. it kind of seems to me that something is telling her shes not done with the meltdown till she gets a satisfaction from it .. used to be she would stop if she made you cry then it went to she would stop if she saw you bleeding i hate to think of what will make her stop if they dont get her figured out
 

susiestar

Roll With It
I would okay the risperdal. It is used to treat violence and aggression. It was a godsend for Wiz - really helped cut down on the violence we saw. It is an atypical antipsychotic and is a very useful medication for some patients. It is given prn (as needed) when a patient goes into a rage, like now, or for daily use for patients who are very aggressive or violent, etc....

With what you just posted about her rages not ending until she sees blood, PLEASE do not bring her home. It is FAR, FAR, FAR too dangerous to have her at home right now. Not if she is that violent. The ONLY other outcome would be serious injury or death which would have her in jail or juvie and end her chances of getting real help. Once in the judicial system there isn't much therapy or help and no way would she adjust well to that life with-o doing real damage to soemone/something - it woud be a never ending cycle. She has a TON more than ADHD and ODD going on. This just is NOT adhd and ODD behavior. Let the psychiatric hospital see what is going on.

I am so sorry. This has to be terribly hard for you. Put some time aside each day just for you. The fact that she managed at home this long with-o severely hurting someone is a testament to your strength and determination and love for her. You have EARNED a break and a reward and respite. Regardless of what the ohter kids say. I will be shocked if she is released in a month - very shocked, but it is a good time estimate for right now. Make sure she is able to be safe in your home before you bring her home full time. Violence is never OK.
 

totiredtofight

New Member
OK so they tried to give her pill form risperdal and she bit another nurse they tried a type that melts in your mouth and that also was a no go and she bit the nurse again so they gave her an injection of zyprexa (they were out of injectable risperdal) after all that they ended up leaving her in the ISO room longer because she still wasn't calming down .. i called again to check on her they said she was doing better but was upset they had taken her pillow pet .. they let me talk to her and she was upset .. first she was crying saying she wanted the pillow pets back when i told her there was nothing i could do and if she didn't calm down they may not let me talk to her again tonight she said " Fine i just wont call you " seems to me she is not " done ' with her meltdown .. i think the staff there may have to prepare for round 2 with her ... anyone ever seen a kid do this ... i mean shouldn't she be calm after the emergency dose of zyprexa
 

Andy

Active Member
Hugs to you! I can imagine how emotional you are going through this. I am glad to hear that the facility did take steps to try to give her something before the injection.

The facility my difficult child was in also used medications when the kids where super upset. There was a standing order for my difficult child to help him through panic attacks. I think it is common for a facility to obtain permission to administer drugs to help calm their patients when they get to a certain state. As long as they are doing what they can to address the issues before the rage sets in (that is the times you can predict it coming on - I know there are many times that it is just there without warning) it is all part of the process. There should also be a plan of what criteria has to be met before the injection is given. It would put your mind at ease knowing that they are not just injecting her so readily and that other methods are used also while she is there.

My difficult child refused once because he was sooo upset but no one would talk to him - it was the night shift and those staff just wanted him quiet and asleep. I was proud of him for making this stand in recognizing that he needed some oral assurance. I know he would have taken the medication if staff had handled it correctly, not just, "Here - calm down - take this!" If they would have let him voice his concerns and then told him that they understood that he was anxious, reminded him of some of the tools he had learned and then offered the medication to get through the night, I am sure he would have taken it. I didn't like that the overnight staff wouldn't help him use his tools. I figure if you are in a 24/7 psychiatric hospital than you should be given an opportunity to practice the tools you are learning 24/7.

What my difficult child went through wasn't as rough for us as many people. His experience was so much easier than most now that I look back on it and am learning what rough really is. Even so, I did my share of crying thinking that it was the worse thing to ever go through. Believing that my son would live in an heighten anxiety state of mind for life was so scary.

Remember, you have permission to take care of yourself throughout this. Take this time that she is out of the home to put things in place for when she does return. Spend quality time with each of the other kids - it is so easy to focus to hard on her right now but they also need to feel that you are there for them. Kids are funny, they can't just KNOW you care about them, they have to have proof especially at the times it is hardest to give.
 

totiredtofight

New Member
ugh seems like it was an never ending night last night ... psychiatric hospital allowed difficult child 2 to call home last night the whole call was "mommy please come get me pleaseeeeeee' and me trying to tell her that i loved her, missed her,wanted her home but she had to get better first .. she finally said her time was up and that she never wanted to speak to me again ... 5 min later the psychiatric hospital calls again so before taking the call i told the staff member what happened with the first call .. turns out she told them that her sister picked up the phone and wouldn't let her talk to me ... they put her back on the line and once again it was " mommy please come get me" and once again it was i love you, i miss you , you have to get better first ...by this time my husband heard i was crying so he came into the room just as she was asking for her dad, she asked him once "daddy please', and he lovingly told her the same i had been.. and she was promptly disconnected by the staff. Its starting to feel like i need to be medicated and put in the ISO room ...difficult child 1 had to see his psychiatrist earlier in the evening of course he told her things were great. he didn't tell her that there were still issues with his anger and impulse control, so when i mentioned it he was sitting there saying nuh huh ... then somehow his appointment turned into a meeting about difficult child 2
 

TerryJ2

Well-Known Member
Oh dear!
Well, the good news is that at least some of them witnessed a meltdown.
The bad news is that, typically, they don't listen to parents. So many on this board can attest to that.
The other good news is that eventually, your daughter will get help. It will just not be done the way you want it, but it will get done.
{{Hugs}}
 

totiredtofight

New Member
I still feel like im in the dark as far as difficult child 2 is concerned .. the psychiatrist has not been in touch with me for a few days and the unit staff isnt much help .. most of the info i get comes from difficult child 2 herself. she hasnt had another major meltdown .. just a few time outs for being bossy with the other kids there and a small meltdown over her new roomy and losing her personal items (stuffed animals and pillow pets) as punishment
 

Andy

Active Member
(((((HUGS)))))

Can you ask to talk to a charge nurse? At our facility, this is the person in charge of the activities of the facility when other supervisors are not around. This person should be informed and knowledgeable of each patient's behaviors and diagnoses. If that person is unable to give you information, they should be able to give you a name of the person you can call Monday morning.

I remember when my difficult child was at the psychiatric hospital, it was the case manager type person that I went to get information. I viewed her as our liason between us and the treatment team.

I am surprised that your difficult child is being allowed to have a meltdown on the phone with you. We were told that if difficult child started that behavior then the phone would be taken away. He would not be allowed to call unless he was able to be calm and polite and not beg to be released.

My heart is sad with you. It does sound by her accounts that things are a bit easier for her? I hope so. Keep insisting that you get to talk to someone who can answer your questions. Then when you get hold of that person, demand a schedule of updates - daily, every other day, ect. so you know when you will get one. I would hope that no news might be good news. They shouldn't be able to tighten her treatment plan (or give certain medications, even PRN) without your input. If you can be assured of that, it may make this a bit easier also.
 
H

HaoZi

Guest
actually MOST of the kids had parents who were as mentally ill as they were and the parents could be even more dangerous.

When kiddo went in psychiatric hospital and we were filling in the background info, there was a space for things helpful to kid. The intaking nurse wrote down something about me being supportive and intelligent. I was like.... aren't parents supposed to be supportive and learn as much as possible about what their kids are going through to help them? It's like I was some kind of rare creature. :S
 

totiredtofight

New Member
The charge nurse isn't much help either ... she just tells me that difficult child 2 if fine and how her behavior was the night before ... difficult child 2 was born with enlarged tonsils which are now causing her problems and need to be removed the day before she went to the psychiatric hospital she saw her ENTdoc .. they called to tell me her culture had come back and she needed antibiotics .. it took 4 calls to the psychiatric hospital to get a nurse to call the entdoc to set up the antibiotics (which difficult child 2 says they are now giving her) .. i really hope they hurry up and tell me something. difficult child 2 also said last night that they are only giving her 1 mg of her intuniv I'm not sure what they are going to do or try with her. i feel like they should know a diagnosis, wendsday will be 2 weeks that she has been there
 

totiredtofight

New Member
Update on difficult child 2.. i just talked with her psychiatrist .. he says she does have ADHD and ODD but also has TDD (Temper Dysregulation Disorder with Dysphoria). Last night was her last night on intuniv and they will give her a day or two break before starting her on Geodon. i have never heard of this diagnosis or this medication .. has anyone tried it?
 

Andy

Active Member
I don't remember if I have heard of TDD but I am sure I have heard geodon mentioned here so hopefully someone can give you input on both of these.

What are the plans for the tonsils?

How are you doing?
 
H

HaoZi

Guest
Huh. Surprised they didn't tack this one on my kid. Wonder if this is ODD version 2.
 

Blissful_Betty

New Member
One classic thing could be bipolar. That would mean getting on the right medication regime would help her greatly. Normally stimulants dont help kids with bipolar unless they first have a mood stabilizer on board. Or two.

Thank you... I didn't realize this, but had a sneaking suspicion... Didn't put it together with the Bipolar piece. My DS was on a "medication vacation" and the new Psychiatrist tried starting DS on 54mg Concerta. He took it one day and at the end of the day he was so "strung out" (chewing his lips, sucking on the inside of his mouth, fingers nonstop movement) that we thought perhaps since he had been MIA the entire day, that he was possibly on speed or something... the other thought was that perhaps without the Abilify he had been on previously, he was having adverse reactions to the concerta, which he had also previously been on... this just cemented that idea. Thanks for sharing that!
 
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