problems i'm stressing

[Jena]

hi

i just called husband and we talked and he's on same page as i am. i had to run it past you guys. i'm not so happy right now and getting that jump on plane feeling in my gut.

i'm trying to calm myself down just ordered lunch.

ok, first of all upon calling here before we flew i asked do you do what the other hospital does and take me out of the picture to force her to eat. they said NO.

today they tell me if difficult child doesn't get in position to eat they'll pull me out of picture.
told them THIS WILL NOT WORK, IT'S BEEN TRIED WILL BE A NITEMARE YOU DO NOT GET WHAT YOUR DEALING WITH . they say it's worked with 90% of the kids. i said well my difficult child will be the 10% that doesnt' work and i'll be living here for a year which I DO NOT HAVE.

today they tell me they've now cut her liquids by mouth off. which means if she asks for apple juice or water they'll tell her no.

why i ask? they tell me because it'll get her need to eat even higher. ok i say i guess that makes sense.

doctor says i went over all her past diagnosis and evaluations and she doesnt' have bipolar. i said ok you have known her 7 days that's it. her pyschiatrist has known her for 4 years now and he's the latest one that diagnosis'd it.

personally i dont' really care about the diagnosis yet you need to respect it and get it to know how to handle her. if you force her in anyway to eat she'll shut down on you and become the most defiant person you have ever met.

i said i think we need to raise the zyprexa 7.5 isnt' going to do it. i said she's there now and still fixating on tube and still stating i will not eat.

i said when does therapy start for her? it wont' here she says the therapist doesnt' have the time slot. i said woo you told me the other day she'd get it. she said well in the day clinic she will.

i said THIS IS AN INTEGRAL PART OF ALIGNING THE STARS YOU SPEAK OF. this kid wont' eat without getting rid of the distorted vision she has in her mind and thought process related to eating solid foods by mouth.

so all in all im very upset. they asked her if she wanted to eat breakfast tomorrow she said NO WAY.

they'll pull me out of the picture this week.i 'll sit alone losing it as difficult child shuts down in a way they've never experienced. i need to get them to hear me. there is no room for trial and error here.

i get i'm just her mom yet i know this kid how she ticks etc. they need to back off, add more zyprexa than bring in the food and slowly work with her. after therapy has started this week.

she's in her room now hitting herself, biting herself saying she wants to die, hates her life hates herself so mad.
i went to nurse and said this is what's going on i need a break. i'm done for a bit now. oh why would she do that?? WTF.

if you read the diagnosis and respected other clinicians findings you wouldn't be asking this question.

 

[Jena]

i'm going to walk off my insane anger right now and than go up and try to meet with-head nurse and talk to her see if she can get thru to the doctor. than tmrw. morning i'm putting husband on speaker while we have our rounds meeting in the hallway. i dont' know what else to do.

 

[HaoZi]

Ah man... is this the same doctor or a weekend doctor? You might also want to stress the trauma from the last hospital that tried it and the nasty outcome it produced. And find out what happens with the other 10%. :S Oy. *hugs* honey.

 

[smallworld]

I agree with finding out what they do with the 10 percent this method doesn't work with.

I also would ask if they don't think she has bipolar disorder, what they think the diagnosis is. There is always the chance that she doesn't have BiPolar (BP) (my daughter M, for example, doesn't, and for that matter, neither do my other two even though they can't take SSRIs).

Cool off, Jen, and listen to what they want to do. They have a lot of experience with this type of eating disorder. Maybe they can still help C. You don't have a lot of options out there and C needs help. So far they've been helpful. It still might work.

Hang in there. Hugs.

 

[Andy]

Oh Jena! I am so sorry!

I wish I had words of wisdom for this moment. You are not feeling well, you are far away from home, things are not going the way you thought they would in difficult child's treatment and pulling her will leave her without any other options that you know of.

You need to catch up on your sleep to reground yourself but that will be harder said then done because your emotions are so charged right now. There is really nothing you can do tonight so my assignment to you is: Take the night OFF!!! Don't even think about difficult child. Do your relaxation exercises - calm yourself down - push all your troubles away and find a peaceful place to spend the next 12 hours - watch a comedy or better yet a show that makes you both laugh and cry - get a lot of sleep - eat a big healthy breakfast - go on a peaceful walk - and then go back to the hospital with a clear mind ready to tackle the day.

 

[DDD]

First of all...I'm sorry and sending as much support your way as I can. Since your situation is unique I don't think any of us can input intelligently about the methods used. I absolutely agree that you need as much of an emotional break as you can access.

I did think the question about which Dr. is relevant. Do you have a Physician who custodian of your daughter's care? Does he work on specific days? Certainly you will feel better meeting with him rather than weekend staff. Tomorrow is Monday. It may give a fresh perspective. I hope so.

on the other hand you and husband chose this facility because you felt it was the best and last chance for your daughers health. I'm sure that you did not travel all that distance with-o researching the specific quality of care provided. Yes, I think it is a great idea for you and husband to have a joint meeting with the Doctor to discuss your concerns. Do they have a psychiatrist on staff, too? He might review the past treatment history by your psychiatrist at home and provide some input.

It is not easy to turn control over to others. In addition to your great love you may be feeling greater fear due to the long time strain you have been dealing with. You've got a plan to rest and rejuvenate. I'm praying tomorrow will bring you a new level of peace. Hugs. DDD

 

[Jena]

hi

i cooled off, saw head nurse at cafeteria while i was trying to not injure harmless passerbyer's..... ha ha

so i told her do you have sometime to talk with me because i feel as though the doctor's aren't viewing the entire picture and i think you may just be the person with whom may be able to reitterate to them the points i'm trying to make. she agreed. how could she not?

so, we'll see how it goes. i have absolutely no problem turning over reigns dont misunderstand here. my issues are what i listed above. i am very far from home, left easy child and my life and quite simply this needs to be approached the best way possible to get the ultimate and best pay off.

if a child is still fixatating on a tube at 7.5 and stating her fear is huge than guess what logical would say increase the medication. what i want to avoid here is the same scenario as what occured at last hospital. if they pull me out i know in my gut she'll tank. as far as the bipolar goes, they've known difficult child for 7 days now and at 15 min a day. the doctor's with whom have dxd her have known her for 4 years and quite honestly i dont' care if they feel it isnt that the one thing they need to keep in their minds to me is her defiance level which we know goes hand and hand with bipolar kids.

if they think they've seen defiant they never have till they push this kid into a corner and she'll say screw this. she's already asking questions because she's so smart how long will insurance approve our stay? what happens if i dont' eat in the alloted time frame? i thought there was a 4 week gurantte with this treatment. what percentage of kids does this work for?

she's downright scary. she talks to her doctor each a.m. i do after alone in hallway. trying to get her to speak up self advocate find her own voice. boy has she found it. and alot of other questions.

 

[Josie]

I agree with finding out what about the other 10% and what they think the diagnosis is.

Maybe you could find a way to just not be around as much, but not actually have them say you won't be there if she doesn't eat. You could tell difficult child that you have some things to do and you don't think you will be able to be there that day. Then, they might have the opportunity to do what they need to do, but difficult child won't be in a defiant mode because you are not there. Hopefully they would let you call and talk to her or maybe stop by for a brief daily visit, but just not be there all of the time.

When we did the CBT with my daughter, they were able to ease her into it because her issue wasn't eating. But she did still have to take the first step and deal with the anxiety and see that she would get through it. Her therapist told me that people did get very, very anxious about doing it. When she knew he was coming, she was very anxious and raged, talked about dying, and did some minor self injuries. I was afraid she would really hurt herself. I think it was intense anxiety and not bipolar, though. Once he was there, she had a good relationship with him and it wasn't so bad. They were in our house, but I was not with them while they worked.

Maybe they feel that your daughter will be able to work with them better when you aren't there.

That is assuming they are going to work with her. Are they just going to give her breakfast and tell her to eat it?

 

[svengandhi]

Would her doctor from home be willing to speak with the doctors out there about the bipolar situation and the rest of her issues? Maybe her home doctor can listen to their plan and give some insight or suggestions? If they're all willing, maybe they can consult on a weekly basis or more often if needed.

Other than that, I don't know what to tell you other than that lots of people are praying for and wishing good thoughts for your entire family and especially your little girl. I would also want to know what they do for the 10% who don't respond. I also have a 10%-er but luckily for me and him, his area of refusal is homework, not food, so I can detach in a way that you don't have available.

Good luck to you.

 

[pepperidge]

You say that they read all of her previous evaluations--so if her psychiatrist who has known her for 4 years diagnosis'ed her as BiPolar (BP) why didn't that evaluation get to Oregon? Or did they read it and not agree to it.

Second question, if they remove you they will still be feeding her through the tube or whatever, right? So at least she will not deterioriate? If you take her out, what are you going to do to get her medically stable?

 

[Andy]

Jena, Don't let difficult child in on how long the insurance will pay. Tell her that it does not matter, you are here to stay! You will be doing what is best for her regardless what insurance says.

In fact, I would be tempted to give her a date at least one week before the actual cut off date so that she will think you have actually run out of coverage. You can then see how she reacts thinking that the financial part isn't important to you. Insurances often run of reviews and extensions - she does not need to know there has been an extension - her job is to get well.

I think she is asking how long she has to put up with this. If she knows insurance will run out in three days, then she is willing to dig in and refuse anything until you are kicked out so she can go home. Don't give her that option to think about and work with.

 

[Jena]

hi

i'm not taking her out. i'm going to try to "effectively" communicate with the doctor's here on this. I did my breathing, recentered myself, and will try speaking to the nurse first. than repeat myself in the a.m.

she isnt' medically stable yet. we thought she was there yet her blood pressure shot down today during ortho's. they take them peridiocally thru the day. doctor wanted to get her up and walking and than i said oh her ortho's are good now? she said oh yea that's right we gotta check orthos' first great point thank you! WT.....

anyhow, no i do not answer her questions about insurance that would be insane and there is no cut off point. other familiy from india was here a year with their kid, yup a year!

all i want is for them to open their eyes, lose the cockiness i see in them suddenly and look at the larger picture. i obviously do not know best im not a doctor. yet i do know her. if they try to refeed at this level and yes they simply walk in with food it wont' work. hands down.

they also won't let me in to see her. they will pull me just as they did at the other hospital.i promised difficult child that wouldnt' happen here. i called and they told me they dont' do that here. i'd also be breaking a promise to her.

 

[susiestar]

Talking to the head nurse is a good way to start. Stress that if they don't take time to deal with the anxiety then they will NEVER get anywhere, regardless of if the anxiety is caused by bipolar, another disorder or the man in the moon eating green cheese. Also tell her that the last hospital tried it for almost 10 full days and she didn't eat or drink anything during that time and she had no feeding tube so she got incredibly and dangerously weak and dehydrated and STILL she was completely refusing to do anything. That they gave her seroquel and quite a few other medications and all it did was scare her and make her MORE defiant rather than easier to force into things.

let them know that until they start therapy there will be NO removal of you because all it will do if freak her out and make her dig in - and that given this extreme defiance and super extreme anxiety she WILL dig in to the point that it kills her. Literally and not just figuratively. Let them know that they need to get all the therapies on board and making some progress, ESPECIALLY with her anxiety, before they can even discuss removing you, etc..... because all it will do is to make her much much sicker and ahrder to treat.

This isn't going to be easy - the process OR getting through to them. You have enough of difficult child's stubborn (she had to get it from somewhere, lol!) and this is why you are such a great warrior mom for her. So don't fully write off what they want to do, because pushing her past her anxiety over choking isn't going to be fun or easy or with-o trauma, but push THEM until they individualize the plan to workWITH her stubborn streak. heck, why don't they start challenging her, maybe even daring her to face her fears? Not in a mean way, or as a put down, but with a positive spin? Praise her stubbornness and tell her that she can use that to beat back the anxiety and fear and to tell the anxiety that she IS going to get better, that it is NOT going to keep her a prisoner any longer. This just occurred to me, but it was a method that we used with Wiz at one point when his anxiety was creating huge problems for him. Make the anxiety a sort of "monster" in her head that she can beat. If she is into any type of character on tv or in a game, use it with that. The anxiety is the "bad guy" and she has to fight it with the help of you, etc... If you are any good at drawing, give her a picture of herself as a superhero fighting off the anxiety villain/anxiety monster to help inspire her and let her see that she can do it.

Does that make any kind of sense? It just seems like it might be a more kid friendly way to get through to her.

Leaving her with the staff while she was hitting herself, etc... was a good move. I hope they went in to her and listened to her - maybe it was a wakeup call. From now on, any time she does something like that, or something over the top, call the staff in to handle it. Help them, of course, if you can. But make THEM see it every time. MAYBE that will help open their eyes. If all they see is a kid who cooperates and does her best while they are there, then they have no reason to change what they think is going to work. they have to see the "behaviors" to treat them. It is what bit us in the tookus when Jess was in the hospital in Dallas. I would also keep a detailed record of what goes on, much as you can. If you don't have a Parent Report, start thinking about writing one. The link in my sig will take you Occupational Therapist (OT) the thread that explains it and why it is important.

I am sorry they already want to pull this crud. I know it must be horribly scary to even think about it. Ask them what happens to the other 10% and ask why they told you that they do not do that and now they are telling you that they do?? I would want to know why they said this, because it would feel like they lied to me (and got me to spend all that $$ to go do something we tried at home and only made her much worse). I am so sorry.

((((((((((hugs)))))))))) You are doing a truly awesome job with all of this. How are YOU doing physically?

 

[HaoZi]

If they pull you can they do it by limiting time rather than absolutely nothing?

 

[Wiped Out]

Just adding in some supportive hugs.

 

[TerryJ2]

Oh, it sounded so good to begin with!

This is so awful. I hope another doctor comes in tomorrow.

I agree that you did the right thing, talking to the head nurse. (I hope she was there when you reminded them to check her out b4 they got her walking. Idiots. Like they're tempting a lawsuit.)

Fingers crossed.

 

[BusynMember]

Is this a psychiatric hospital? I've been in three. Unfortunately, they do things their way. I fell into line or actually got punished. However, in the end I felt I was helped a lot.
I would not push on the medications. To be fair you're not a doctor and I don't know how much Zyprexa is safe nor do you. It can cause horrible side effects...my son had the involuntary movements that can develop. Also, Zyprexa does not help Obsessive Compulsive Disorder (OCD) obsessing. If she is still obssessing maybe it's the wrong medication, but, no, I don't think it's necessarily logical or helpful to increase it. I would let that part go. Also, every doctor interprets behavior in his own way. If she does not have obvious highs and lows, he may decide to call it mood disorder spectrum. My diagnosis was changed from bipolar to MDS and it makes a lot more sense. (((Hugs))) and hang in there. One day at a time.

 

[smallworld]

Although Zyprexa is not FDA approved for Obsessive Compulsive Disorder (OCD), it does help with anxiety, distorted thinking and "stuck" thinking. It is also the medication of choice for choking phobias and other eating disorders. Furthermore, Zyprexa has two "kick-in" points after each dose increase: within the first few days and after the first month. In other words, it takes hold after a few days, but becomes fully effective after a month.

 

[BusynMember]

But there ARE bad side effects. If it were me, I'd let the doctor decide. I wouldn't want to mess with that hot potato. Doctors do have a tendency to increase, increase, increase if something isn't working. In fact, sometimes the medication itself is part of the problem. Not trying to be argumentative . Just that I've been there first hand.

 

[HaoZi]

Although Zyprexa is not FDA approved for Obsessive Compulsive Disorder (OCD), it does help with anxiety, distorted thinking and "stuck" thinking. It is also the medication of choice for choking phobias and other eating disorders. Furthermore, Zyprexa has two "kick-in" points after each dose increase: within the first few days and after the first month. In other words, it takes hold after a few days, but becomes fully effective after a month.

I'll vouch that it helps with anxiety and distorted thought. If it wasn't for the screaming late night foot pains it gave kiddo she'd still be on it. The Abilify doesn't hold her anxiety and distorted thoughts like it did by any means. And dose increases took a few days to start showing up, real major improvement was a week later.