dont' even know what to title this

[Jena]

hi yup me again. sorry just typing away lately.

i drove 6 hours to see difficult child tonight at hospital. i got there parked truck and went up and they said she didnt' complete so i couldn't see her. I also can't see her tmrw.

i got a call while on road their trying a new approach with-difficult child since what they've been doing isnt' working well. they also said there's a piece missing which is when it gets close to visitation cut off difficult child downs her food.

if difficult child doesnt' complete her meals in 90 minute time frame (an extended 45 minutes) no visitation for following day for her. so that means since she didnt' finish tonight no visitation for her tmrw.

i can try to see her at groups held in a.m. if she completes her food. i told the dr. you have one day with-this approach ill give you till sunday with it. if it doesnt' work you gotta find another route.

they said difficult child is verbalizing very much so now that she is attempting to get ex h and i back together by not eating. she did also admit that she is afraid of choking which has lead to her not eating. yet dr. states there is two components here manipulation and defiance and enjoying the attention and "milking" this disorder right now & thinking she can get my insane ex and i back together AND the multiple diagnosis's that she has ontop of the other junk i just wrote.

he said she is loving the attention this sickness is bringing her, the gifts and rewards from me (which i will stop) they were minimal. he said getting everyone up there to see her dad and me( which ih ave stopped joint visiting 4 days ago)_

he also said to me tonight in order for difficult child to get well you and ex have to deal with-yoru issues also and make it better!! wtf are you kidding me.

i told him in no uncertain terms my marriage ended because my ex h is volatile he blew and was verbally abusive and threatened to hurt me while the kid was in my arms. i had him removed by cops, an order of protection put in place and curbside drop off and pick up. i said he only sees her 5 days a mos. and should not be an integral part of this entire thing righ tnow. i am the decision maker in this scenario not him.

again, he repeated you need to go to family therapy with-him to make her better. ok, that will

only set difficult child up for a fall because dad will not be that involved in her after care. proof positive ten years of me going to doctor's alone with-her.

it will only make difficult child fixate more on getting us back together.

we do not co parent together. i parent and make all decisions medically and academically for her. he is allowed to "be informed" that's it.

also him seeing her this much there is triggering her something awful i know in my heart it is. the pyschdoc seems to think that if we now cut him back she may dig her heels in even more.

so when i go home tmrw. i will:

get court documents and order of protection for them to view.
sit down /them on tuesday and inform them if you would like to have sessions with-difficult child and ex h together that's fine.

yet i wil not sit in family therapy sessions with-him and her.

so i'm really not happy tonight to say the least. i totally messed up here bigtime. i know i did. i was so emotionally wrapped up in what was giong on i should of since the beginning told him you stick to normal visitation while she's in hospital every other weekend and that's that. yet i allowed him in the door with-all his neurosis and anxiety and paranoia that triggers the **** out of her all the time.

i sat alone on the side of highway tonight and just balled and how insane this all is and how now i have to ontop of focusing on getting difficult child better deal with-all this also. oh and my ex mother in law pushing her way in to when will i see her?? i planted her not to worry

 

[Andy]

The facility should not be trying to get you and ex-H to work things out. Their responsibility is getting difficult child well and once you tell them that you and ex-H lead seperate lives and never do things together, then the facility should be working with difficult child to accept the fact that all though Mom and Dad both love you, they will not be getting together. That is life and certain things can not be changed.

You are perfectly right that any time at all with you and ex-H in the same room together will feed into difficult child's fantasy of he Mom and Dad together again.

Maybe this is the reason many psychiatric hospital's and facilities like this do limit visiting hours and who is allowed to visit. Part of those visitations can be deterimental. The patient does enjoy the attention even at the cost of isolation all day. Time to start sending the message that the world is going to stop until she takes her behaviors seriously.

I like the idea that ex-H only visits on the times he would have had her anyway. He also has to be given the boundaries of those visits - what he is allowed and not allowed to bring - etc, etc, etc,

Don't beat yourself up at what has been happening. This was a crisis and you were following your instincts in what you thought was best for difficult child. You wanted to assure her that her family still loved her and wanted to see her. You are learning as you go - it is just so hard when everything you do try seems to not work.

Remember, you do not know what is going on in her mind. Pray that some of it is self thoughts about what she wants for her future. Does she really want to live like this? The problem is that although the answer is "no", her fantasy life is so unrealistic that it will be hard to get her to see the way it should be for her.

It is good that she has started to talk - now the docs need to sort out what/how to start working on this.

 

[klmno]

I typed up a response but it apparently went to the black hole. I'll try to muster up enough energy to try again later.

 

[Jena]

andy i get that. yet i'm struggling with-not seeing her till sunday. i'm struggling with-their approach yet again. yea let's remember i have Obsessive Compulsive Disorder (OCD) obsessional thinking

i told dr. i will not do a family therapy session with-him. he said you have to!?

difficult child said to them tonight but i tried to eat. they said no sorry no visitation until you do eat.

i just dont know anymore i'm totally stressed out

 

[klmno]

Ok, second try so more to the point. I think you and ExH might benefit a little more from mediation than family therapy right now. As far as your daughter- I'd call that unitentional manipulation because I still doubt that she's intentionally doing all that as a thought-out process to manipulate you. But this debate went on about my son too when he was that age. It's hard to tell I guess, but in my son's case half the people treated like a MH issue and the other half treated it as a "bad behavior" problem. You can guess which did what.

 

[Josie]

Jen, if this were my daughter, I would be concerned that they keep raising the bar for her when it already isn't working. She wasn't drinking enough liquids, so they switched back to solids. Since she is afraid of choking, this is making it harder for her. Then, when she still doesn't eat enough, they say she has to eat it faster.

I would also be concerned about them delving into areas that are not really related to the food issue. I have a hard time believing that if you and your ex got back together and everything was fine between you two, that she would start eating. And obviously, that isn't going to happen anyway. Unless she is just making up the part about being scared of choking, that part would still be there. None of that talk is addressing her anxiety about choking. She is diagnosis'ed with Obsessive Compulsive Disorder (OCD) and Generalized Anxiety Disorder (GAD) and those seem more likely causes than manipulation, to me. Maybe part of her Obsessive Compulsive Disorder (OCD) is obsessing about you getting back together with ex, but again, it doesn't solve the eating problem.

I would ask them how many kids they have had with an eating phobia and what kind of success they have had with this method with those kids, and how long did it take to "break" them.

 

[smallworld]

Jen, lack of nutrition causes a lot of distorted thinking. I suspect that's what's going on in your daughter's head right now. And unfortunately, the doctors are taking it all at face value because they don't know her or you very well.

As you know, my daughter had a very similar choking phobia. The doctors treating her could have assumed that she was manipulating to get attention because her brother and sister had fallen ill with mood disorders the previous year. But that was not the case. M was always an anxious child. And because her world was turned upside down by her siblings' illnesses, her anxiety manifested itself as a choking phobia (at earlier ages, it was hair pulling, separation anxiety, selective mutism, etc).

I don't mean to be unkind here. But as a mother who's been through a similar situation, I'm having a hard time seeing how these methods will cure your daughter. I truly believe the doctors need to prescribe medications that will reduce her anxiety more and then work with her therapeutically to reintroduce food. Zyprexa is the only atypical antipsychotic that has been shown in clinical studies to be helpful for the treatment of eating disorders. Even if the doctors are insistent on sticking with Seroquel, 10 mg Zyprexa is roughly equivalent to 500 mg Seroquel. Although every child is different, it took 7.5 mg Zyprexa to get my daughter to eat again. Do the math. Your daughter is on a minuscule dose of Seroquel. It is likely not to be touching her anxiety.

Hang tough, Jen. You know your daughter best.

 

[DammitJanet]

I firmly agree with SW. I would point blank ask the DR about trying to switch the medication to zyprexa...in a nice way of course. I would also tell them that you have attempted family therapy in the past with xh and it was a disaster but that if and when your dtr gets much better and you might consider it again if you feel it is in her best interest. At this time, you believe the current custody and visitation orders are perfectly satisfactory and in her best interest. You however are more than willing to attend any therapy that they deem fit.

I also think the going back and forth between solids and liquids before liquids are completely conguered is hampering her. I can see liquids with a bit of thick-it in them for making them slightly thicker being the bridge. Trust me on that one, she will want solids fast with that thick it! Icky stuff.

 

[klmno]

I haven't been able to read a lot of posts in detail the past few days so I guess that's how I missed the part about liquids not working well enough so they put her backon solids. I don't quite get that decision either- other than that it's lloking to me that they must be convinced this is all a behavior issue. That's all I can see but I haven't read and caught up on things.

 

[Jena]

guys i'm shot. i really am. i gotta head up in a.m. to attend family support thing alone. husband didn't come out tonight. i am hoping that when i wake up i will be able to think more clearly. i'm at a loss right now. all i know is it's been an insane ten days. it was insane before it.

she did liquids and conquered those. that is my fault because my posts are all over the board. it's been insane. solids first than onto liquids, than conquered those, than shut down on those, than she went back onto solids. round and round we go.

small she's getting enough liquids that i do know. she isnt' dehydrated. she is on lithium now. i can't just pull her. dr seems to feel by totally cutting her off to me tmrw it'll make her eat.

 

[klmno]

Yeah- I can see why you are doing what you are. I'm getting the impression that SW's daughter was in a lot worse condition, physically, and younger too than you daughter is. That does effect how they will approach this quite a bit.

Get some rest and mull it over- I completely understand just having to take things one day at a time and trying to stay sane enough each day to do what we think is best.

 

[smallworld]

Jen, it's not a question of not being dehydrated. It's a question of how easily can she eat. Is she eating normally? If you took her out of the hospital tomorrow, would she be able to go home and resume normal eating? When my daughter starting taking 7.5 mg Zyprexa, it was as if a light switched had been turned. All of a sudden she could eat normally again. It was that dramatic.

 

[Jena]

i hear you i do. i'm just a bit lost right now. that kick butt jen person has left the bldg for now. maybe i just need some rest. i've lost that fight in me for now. their giving her lithium becaues they say she is bipolar like everyone else. they say be patient it'll work. their cutting her and i off. i feel this total loss of control over the situation right now. their pushing me to revisit my issues with-ex. i addressed those it's called an order of protection and a divorce. why is he even there? why is he involved? bc he's her dad that sees her 35 days a year?

husband says trust doctors, yet how can I? it's been ten days with minimal consistent eating. i dont' know where she's at, she's eleven, what she's thinking, how much more pressure they can put on her, how much more i can take. where do i go if i take her out? i have nowhere to go. i dont' know how to pull out a kid that has lithium in her and medications i dont' have scripts for. i'm totally lost in this **** right now. my clarity just isn't there.

 

[smallworld]

Then go to bed and get some rest. Tomorrow is a new day. Hugs.

 

[graceupongrace]

Jen,

No advice, just supportive hugs. Please don't beat yourself up about any of this. You're doing the absolute best you can. You're not crazy; you're dealing with a crazy situation. So hang in, and know that you're not alone.

 

[Jena]

ok sleep didnt' work. my wheels were spinning way too much and self soathing tonite isnt' working.

i've decided i'm giving him till tmrw afternoon to see if she completes. the deal is complete all meals, so if she tanks on lunch than she knows no mom on sunday. if she doesn't pull it off tmrw plus a no go today guess what your approach is bs. so i'm going up in a.m. and leaving him a note stating that, well nicely though.

than i will go up sunday against them allowing me to see her.

i'm giong to say ok you tried 3 diff approaches your way and got nowhere really quick so now here's what i think we should do.

1. give her a roomate, she is lonely and we now know she is sleeping. companionship is huge for difficult child.
2. back to liquids starting sunday. liquids for breakfast, and lunch p.m. will be dinner.
3. allotted timeframe for completion will be 3 hours. not 1 hr and a half.
4. labtop will be given back. she will be allowed one call her day to me.
5. on day 3 of her completing that cycle than d

ay 4 we go 2 solid meals and leave breakfast liquid.
she attends all pyscho therapy groups. i do not care if lunch has to sit and she has to rejoin it later.

bar's too high now my mom guts screaming at me loudly. husband says trust doctors but what does he know. i've trusted docs for eleven years look at mess we are in now.
my bet is she will not complete any tmrw. she will totally shut down and do nothing. my kids' overall being is slow to warm up maybe this approach works with other kids yet not my kid my bet is.
i'm cutting ex h's visits back right now and telling difficult child it is due to work. he wants to mess with me let him go to court.

if she was "milking" it as dr. said she would complete dinner's immediately to have full visiting hours. she isn't milking it. she is afraid to eat, is it a control issue also possibly. yet small made good point we are now at 2 mos. mark now of no solid food. brain isnt' functioning right also with all those medications. if no improvement with lithium very soon. they can flush it out and go with zyprexa.

ok i will be reading this again tmrw what i just wrote becaues i'm half asleep right now. i'm typing it up on computer downstairs in a.m. and dropping with-dr.

 

[Jena]

all in favor of this approach say yes please. only if you are. my gut is telling me this is the way to go this dr. is a jerk the therapist good yet conditioned to her environment there and she's never deal with-a difficult child like mine. yet i have. i may not be a dr. but i know this kid inside and out.

 

[Marguerite]

I do think you need to let them handle things more. Or at least let difficult child see you letting the doctors have control. At the moment difficult child sees you intervening here and there, so she feels two things:

1) you are in control (when in reality, you are not) so all this is your fault

2) if difficult child believes she can manipulate you, then it follows that she believes she can manipulate you into manipulating the doctors.

Getting you and exH into family therapy - I wonder if this doctor has been misled by difficult child's comments about you getting back together as a family? Maybe the doctor doesn't realise just how impossible that is, and why. on the other hand, if it IS so very impossible, then maybe you all in therapy is going to be such an obvious failure that finally difficult child will realise, there is no hope there.

I think you are right, exH has had far too much input into this and it gives the impression to difficult child as well as the hospital staff, that his opinion has value and that your relationship is closer than you claim. You've been placating exH and along the way, placating difficult child. It's what you have learned to do, to keep the peace. So they keep behaving badly and you reward them with allowing it.

Time for you to clamp down. Also, I think, very much time for you to let the experts have a run at it, and for you to look after yourself. She HAS been getting a huge [aypff in terms of attention, so even if the problem was initially "I'm afraid I'll choke," it has now morphed into, "Hey, they really care about me! But if I begin to feel better and have less trouble swallowing, I'm scared that they will stop worrying about me, and I still might choke only nobody will be watching to keep me safe."
Both issues get mixed up together and cause trouble.

The original anxiety swallowing problem may be resolved, but now you wouldn't be able to be sure.

Let thme continue. As long as they realise the problem is multifactorial and they will work on multiple fronts, good.

Family therapy - you, H and difficult child. ExH can go fly a kite. Unless it's done with the understanding that you are trying to sort out boundaries with him and nail them in place, since he clearly doesn't understand boundaries at the moment. This could work in your favour, making it clear (to independent professional witnesses) that exH has been long-term ignoring boundaries.

Get some sleep. Rest and meditate, if you can't sleep. Write poetry. Anything. Often if I can't sleep, I get out of bed and go sit somewhere in the half-light, and write what is in my head and heart. Reading it later, or giving it to a therapist to read later, can be very helpful.

Marg

 

[smallworld]

Jen, you can let the Lithium stay. It hasn't had time to work yet. It's the Seroquel that either has to go higher or needs to be swapped out for Zyprexa (they're in the same category of medications). That will directly hit her anxiety around eating.

 

[Jena]

ok so clearly i'm insane and none of us agree that they should change their approach? i'm telling you i just might be losing it