it's all wrong

Jena

New Member
i sat here tonight thinking about their approach the past two days. it's bs. their an aneroxic bullimia place not a food phobia choking phobia place. i think i made a mistake.

granted they may just discharge her tmrw anyway due to the insurance issue yet fact is their threatening her to eat. no one is talking Occupational Therapist (OT) her about her throat, doing food exposure with her to begin refeeding. what their doing is threatening her to eat. she has extended dinner it's called. which basically means she's sitting alone in a room with a mental health person who is telling her to eat for an hr and a half. meanwhile she is missing all her groups, etc. therapy! due to this. she than goes and sits inher room alone and cries after this approach doesnt' work and she is told to go to her room.

they told me today to let them do their work. umm no. it's just wrong. my gut is screaming really loudly to me on this one.

their also giving her a negative image of food, not dealing with the larger issue that being her phobia their just slapping her hand and saying hey kid eat or miss art therapy. wtf.

so i'm going to fight in a.m. to overturn insurance decision and than i'm going up and enlightening them about food phobia and seeing if they can handle difficult child the right way and if not i'm pulling her anyway.

where i'll go next i do not know.
 

klmno

Active Member
Is she telling them that she is afraid of choking? One thing I found is that if I was too accessible to difficult child, he confided in me but not anyone else, and the profs don't want to hear it from me, they have to see it themselves. Did they convey themselves to you as being a place with all kinds of eating disorders when you were checking them out and visiting, etc?

Maybe SW can give some advice since she has more direct experience with this.
 

Jena

New Member
yes they said they have experience with-all eating disorders. yet difficult child has to ask to have her bathroom door unlocked to pee bc they keep it locked. it's just wrong i have done the research and no one is talkign to this kid about how she feels about her throat, or talking her thru eating. their just forcing and threatening her. that's bs. total bs. husband even said she'll never long term eat if its approached taht way
 

klmno

Active Member
If you are going to pull her out due to not liking their program, I think I might not continue the fight with the ins company. You might need to argue a case for getting her treatment at a later date and if you fight this battle, it could make them more determined to win the next one and use the fact that they "gave in" on this one, then you pulled her out anyway.
 

Andy

Active Member
Jena, I am so sorry you are feeling like this. I really think the people who can help are not working until Monday. Since difficult child came in so close to the weekend, I think they just threw her into a standard eating regimine that they may use for MOST of the kids and not really looking at what she needs - BECAUSE, the people who really make up the treament plan are those people who work Monday - Friday. I would hope that the evening/night/weekend staff are documenting her EVERY move and how she reacts to this treatment. Like someone else mentioned, this may be standard just to see how the child reacts when forced to eat - to see how she behaves with food. Will she just sit and refuse time and time again, will she eat just a nibble to see if that is enough, will she get so frustrated that she starts to throw the food? It will be given to the Monday morning people who will re-evaluate her needs based on her behavior. Talk to the head nurse or treatment person on Monday morning. The real professionals who make the treatment plans don't work on weekends or overnight. It is rare that evening/overnight/weekend staff have the authority to change the plan they were told to follow - though a head nurse could call someone to do so.
 
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Jena

New Member
klmno i see your point. yet i am afraid too to bring home a kid not eating like this. so i feel like i gotta try to work with-what i have right before me. so fight the insurance co. than work with-team there to see if they'll get what she's going thru and change their approach.

as far as staffing is concerned andy they do have their monday thru friday ppl on now. she has met with-the head of the the place pyschdoc who is treating her, the dietian, and the therapist. no head nurse there. it's a sepreate unit eating disorders clinic at princeton medical center. which supposedly is the best hospital i can have this kid in.

i'm going to lay down and try to see if i can sleep. than get up tmrw and fight everyone.
 

smallworld

Moderator
Andy, tomorrow is Friday. Jen can still talk to weekday staff before the weekend. It's important to get the appropriate treatment going. Jen is right -- food phobia is treated very differently from anorexia and bulimia. Her daughter shouldn't have to waste away all weekend. She hasn't eaten any real meals in several weeks.
 

Andy

Active Member
I am sorry - I was posting my last response thinking today was Saturday - I take one day off of work and it messes up my internal calendar.

O.K. that changes some of what I posted - you are not working with evening/weekend staff - you have been working with the regular weekday staff who I believe are more in tuned to the client's needs.

First to the insurance - It is very common for insurance to authorize a set amount of time to cover the cost of an evaluation. I think that is what was authorized. Then, when the assessments were done and sent in, the insurance company denied due to not enough cause for medical necessity. So, I have heard that many insurance companies will automatically deny to drop a lot of claims that have people too discouraged to continue. Also, with the documentations the facility should be keeping at each and every meal and in between times, the medical necessity factor may just turn in your favor after today. The facility should send in everything to date in an appeal.

The facility needs to prove to the insurance the extent of the the eating disorder - if they can not force her to eat after a certain amount of time, then there is a need for treatment.

It is hard to watch her struggle with this but it does need to be documented by a professional in order for the insurance company to listen.

Since tomorrow is Friday, you should ask for a meeting (without difficult child) with the head nurse or doctor and discuss your concerns. Be open and present your issues in a objectional (non-personal) manner. "I am very uncomfortable with the treatment of extended meals. It just does not make sense to me - can you explain why you think this will work and now that it hasn't after XXX amount of meals, what will your approach be for today and this weekend?" The honey will attract more information and cooperation from the facility then the angry bee. Ask for their reasoning before introducing your thoughts on how they should proceed. If you still don't like what they plan on doing, then direct them to your research, "I believe my daughter has a food phobia which is different than anorexia/bulimia. I thought the treatment would include.................."

Remember, you are in a very intense highly emotional state and thus may not be looking at the whole picture - you are focusing solely on difficult child's emotions and need the facility to show you the big plan. They should also be able to tell you what to expect and the timeline they estimate each step may take. They are not emotionally involved so talking to them in that state will have you and them talking a different language of termonology. You can state yours and difficult child's emotions but they will not "feel" them. They are not in the panicky, fix me now, mode that you and difficult child are in.

Remain calm and as professional as a mom in your situation can be. I know that you will be. Gather more information from the facility directly before making any harsh quick decisions.
 

smallworld

Moderator
If you read the Newsweek link I provided in her other thread, you will understand why many insurance companies don't cover eating disorder treatment -- they don't consider it a biologically based illness. That's what Jen is up against.
 

graceupongrace

New Member
Jena,

My heart goes out to you and to difficult child. I know you're beyond exhausted, and scared. I've been following your posts, and you're doing an amazing job of handling what must seem like an impossible situation.

Just wondering... is the clinic's approach part of their diagnostic process so they can see for themselves how she reacts to food before they proceed with treatment? They may have a different perspective, as difficult children tend to deal differently with "outsiders" than they do with parents. I'm not saying the clinic's view is right; it just may be different.

I know that things are not going the way you had hoped, but at least she's under regular observation by medical professionals who can act quickly if they need to. I think you need to ask yourself if she's better or worse off than she was at home. I'm hoping you can get the insurance issues resolved and at least stick it out through the weekend (and get some sleep!), then go into the Monday meeting with lots of questions, especially regarding how they address food/choking phobia vs. other eating disorders. Also, what are they seeing, and what is their plan for dealing with it?

Many hugs & prayers. :praying:
 

LittleDudesMom

Well-Known Member
Jen,

Just letting you know that you have a lot of folks behind you this morning as you deal with the insurance company and the docs. Stay strong.

Sharon
 

Josie

Active Member
I read some of the Newsweek article and noticed they considered Obsessive Compulsive Disorder (OCD) a biologically based illness. Since it is a food phobia, it seems OCDish to me. Treatment is even similar to Obsessive Compulsive Disorder (OCD) treatment with graduated exposures to food, from what I understand. Maybe if you could get them to call it Obsessive Compulsive Disorder (OCD), insurance might cover it. It doesn't seem like a big stretch to call it that to me, but obviously, I am not a doctor.

My daughter has been treated at an Obsessive Compulsive Disorder (OCD) treatment center. Her therapist has also worked with people with eating disorders like anorexia. I'm not sure if it was while he was at the Obsessive Compulsive Disorder (OCD) center or before, but there does seem to be an overlap. If this place doesn't work out, looking at Obsessive Compulsive Disorder (OCD) centers might turn up a place that is closer that can deal with her food phobia. My daughter's Obsessive Compulsive Disorder (OCD) treatment involved a therapist working with her 1:1 while she dealt with her anxiety doing things she was afraid of.
 

Jena

New Member
you guys if i had more time here on earth i swear i'd go to school to be a pyschiatrist because i am so sick of hearing how we all suffer with such idiots. i'd open a clinic, serve ppl for free, get a team of ppl pyschdocs who saw my vision and write a mission statement that would kick butt and open up chains of them across the u.s. i get so mad each time i read how all of you battle ppl, doctor's, medications, doctor's just writing scripts not giving enough answers. wow it fuels me like nothing else.

i got a few hours. my stomach got soo sick from some freak burger i grabbed at a diner last night and difficult child was texting at 6 a.m. the fight is already happening, got ppl involved that are advocates thru ex h's company he jumped on it early too. im trying to use his rage to my advantage this time :)

why is it i always have to enlighten docs' tell me why and i have no clue and am just a mom

ANDY it's all good and the funny thing is i responded like it was a weekend lol because i'm shot
 

Jena

New Member
i thought i'd fight with-insurance first and meanwhile set up a mtg. with-staff at hospital just incase i win with insurance this way difficult child doesnt' get tortured another entire day. because i'm at that pyscho mom piont where they aren't going to like me very much very soon. i'm sweet and nice and appreciative to a point yet than i change :)
 

Jena

New Member
ok now they are threatening difficult child and saying to her if you do not eat you cannot speak to mom. so today they took her cell phone today to get her to eat.
 
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