need input please.

[Jena]

hi me again i'm so sorry for all the posting as of late. so much to consider.

we ran into problems with-the place in oregon, they want a substantial down pyment along with-the flites which are quite expensive. it will be very hard to come up with-that money.

i found another local place, spent an hr on the phone with-the director this morning. this is where i def need opinions and thoughts. gotta be honest been up all night with-her again and i am shot and really depleted right now.

new place is 3 hours away. they will work with-difficult child to get her to eat. it is specifically for eating disorders, dietician there, tutor during day, other kids, in a rm with a kid who is 13 years old, art therapy, pyshciatrist everyday, therapist everyday, family counseling. no feeding tube. they want to work with-her to get her to eat. they also will address all her other issues and finda medication that works. clincher is i have to leave her there by herself. parents are not allowed there at all. that means i admit and i go. only visiting hours are allowed.

or fly 7 hours away to the other place. i stay at ronald mcdonald house next door. they treat only the eating food phobia she has, they do use feeding tube thru nose, only medication is zyprexa and they wont' be addressing other issues at all. problem hopefully solved within 3 to 5 weeks. than her and i return back home. than begin our round at doctor's to solve other issues anxiety, non sleep, all that junk that you guys know about.

i have to be honest our house is in crisis mode. things are a mess here due to her and have been for quite sometime now. we manage thru it, there are good days dont' get me wrong. she has great days she truly does. yet right now she isnt' in school, she is up all night long (problem due to mania and stupid remeron that just isn't right for her) sleeping all day, no eating, alot of mixed thoughts in her head.

what do you guys think. be straight, be blunt if need be. i wont' be offended just tell me your gut thoughts. husband and i are confused. i usually prevail yet i'm way too shot at this point. i don't know if ican handle dropping her somewhere like that. i can get thru it somehow if it meant she'd be better though.

place is getting back to me today to let me know if they'd def take her. if they do they can do an admit by monday.

thanks.

 

[PatriotsGirl]

My opnion - let her get the help she needs alone. Momma, I know we want to be with our children. But she needs to work on her issues. You being there may actually end up being a distraction. Stick to the visiting hours. This is going to be the best thing for her and only three hours away is beautiful! You have other children that need you, too, as well as a life you have to keep living. She will be in very capable, experienced hands that will give her the help she desperately needs.

 

[Bluemoon]

Hi. I am hesitant to reply cause I know so little about your situation and don't know much anyway, but you did ask for gut feelings. Mine are that you should take her to the place that is closer and that will address ALL her issues in tandem and not by force (ie: feeding tube). You said you can visit her there. She will not be shut away from you completely.
You need to keep yourself sane, too, meaning allowing yourself a chance to regroup and get your home back in order to be at your best when the time comes to all be together again.. I also think her issues are probably linked or at least work in tandem with each other. May trigger each other. Even if they managed to "solve" her food phobia in the other place, when she comes home and you begin working on the other issues I think it could put her at risk of relasping back into it. JMO.

 

[Jena]

thx to both of you for giving me your gut reaction to it. i'm having a hard time getting myself there right now. things are always changing so fast here and seemingly getting worse faster. they should be calling me bk this afternoon to let me know if they'd accept her which i'm confident they will and to run insurance which they said they do accept. just didn't think it would ever come to this ya know.

 

[Shari]

My vote would have to be for the local place.

I understand your concerns about not being there, but, I know in my own situation with Wee, there are things I do to survive life with Wee that aren't necessarily helpful to Wee (not that they are necessarily harmful, either, they are coping mechanisms on my part - like driving him around in my diesel truck when he can't sleep - it doesn't teach him to deal with his situation on his own, but we have to do it, because I can't function on no sleep anymore and I have to keep my job). If I were to follow Wee into a place that was trying to establish a "normal" routine for him, I feel I would probably be a detriment instead of a help, because I am so conditioned to doing what we have to do to exist and survive in our home instead of what should happen in a "normal" home setting. There would be a learning curve for me, too.

I don't feel like I'm explaining this very well....sorry....but maybe you get the gist?

 

[smallworld]

I'm of a slightly different opinion because I've been through an eating disorder with my daughter. I'm not saying you have to go to Oregon, but the eating disorder needs to be dealt with first and foremost before the other issues are solved. Otherwise, you're not going to get anywhere with the other issues. Zyprexa will help with eating, sleeping, mania, anxiety and mood stabilization. It will help with a lot of the issues you're dealing with right now. If the local hospital is not equipped to deal with the eating issue properly, it's not the right place to go. Food phobia is NOT anxorexia and bulimia. It's a different kind of eating disorder. JMHO.

 

[confuzzled]

local.

if you don't address all of the issues and strive for overall stability, it will be hard to achieve nutritional stability. while clearly eating/drinking are the immediate problem at hand, everything needs to be addressed to solve it.

an NG tube can be done anywhere--it doesnt necessitate going across the country. (a parent can be taught to do even), and although you didnt ask, *i* think thats a pretty tramatic and invasive option for someone with anxiety to begin with, quite frankly, it actually *does* irritate your nose/throat, and it can be a notorious pathway for a variety of infections (i'm envisioning a ramping of of anxiety, which actually might have a legitimate component, and a girl who cried wolf too many times, and the mess that could follow, if that makes sense). CLEARLY, it is a necessary evil if someone is in need of nutrition, so don't misunderstand--it would be a medical decision, one of which that actually *is* the lesser of all evils for the short term. it can be one of the most important nutritional techniques used, in conjunction with intensive therapy, in the nutritionally unstable. but its still only one tool.

but i would focus on the big picture. it would seem to me that any place, medical or psychiatric based, would assess for full nutritional needs and determine if medical hospitalization/Nasogastric feeding is in order--that would probably be the very first question i'd have for local. i'd personally be leary of someone who takes an absolute approach without ever having seen your difficult child....one size does not fit all.

i know you tried to call the psychiatrist, but maybe try again and see if he has any other suggestions on the east coast for inpatient services. while phobia might be rare, anorexia/bulima issues arent, and theoretically, a good program would have the medical/psychiatric services available, and theoretically, would tailor services to the need of the patient. thats a big theoretical, but it cant hurt to make a few more calls.

when i think of feeding (admittedly, more for mechanical issues, but even mechanical based prog's have a psychiatric component) i think immediately of CHOP and Cleveland Rainbows and babies. what their psychiatric/eating progs look like, I don't know. i do know CHOP has some sort of anorexia impatient deal....i would guess if you called for info and it was appropriate for your difficult child, your pediatrician could expedite getting you in. i'm sure you have zero strength to make yet another dead end phone call but it can't hurt at this point.

would beat flying 7 hours away. and i'm also going to say this....i dont know anything about ore, but if any program is promising you a fix in X amount of time, i'd be very leary. no one has a crystal ball...i'd just hate to see you plan on a ~month stay and it end up being much longer than expected.

thinking of you.

 

[Farmwife]

DO IT DO IT DO IT!!!

Also, please check my response in your other thread so you can get a background on why I had to say do it in caps and triplicate. : )

The expense is a big thing but that doesn't even come into play with my opinion.

Her being alone isn't a bad thing, do not feel guilty. The staff and other kids will become her second family. The distance is close enough to visit her but let her have time to do what she needs.

MOST importantly she has YOU in a tail spin. YOU need time to recover not just physically but emotionally. As much as you love her you will be no help to her unless you are stable too. YOU deserve the time to get the rest of your life in balance. I know it is scary but from personal experience with placing a family member in psychiatric. Is that it is a relief to know they are safe and in good hands. This is a good thing for her, you are over your head right now so the soonest and highest level intervention is a bird in the hand. Across the country at the expense of your marriage and personal life plus finances seems extreme.

Plus, the fact that they will address all of her issues concurrently rather than addressing certain symptoms out of context sounds ideal. I don't think this is just an eating disorder and I think you may not as well.

This hospital is offering a safe harbor and although scary you will feel so much better after a few good nights sleep and maybe even a dinner date with your husband where you VOW not to talk about difficult child. Sound too good to be true? Then that just proves it's time for you to take some time for you too. Rebuild a stable home for her to return to. You shouldn't have to choose between her or your husband.

Besides, what's the worst that could happen, she get too much care vs. too little? Maybe it could buy time before you decide to commit to the huge across country idea. Make the decision rested. You could always move her later if this isn't what you had hoped for. Either way Monday is so darn close!!

 

[klmno]

I vote for the local place. If she's above 100 pounds, in my humble opinion, I'd go for the place who'll work with her therapuetically to see if they can get her back on track with her eating prior to force feeding with a tube. I think you can all adjust to you not being there with her daily and seeing her thru scheduled visitations. Pluss, the cost issue won't be as stressful which wouldn't help anyone's frame of mind to have that on top of everything else. Primarily though, rehab of most types are much more successful if family members and friends are not there on a daily basis.

 

[smallworld]

I think you all are missing the point about an NG tube. When a child hasn't eaten for a long period of time, she loses her appetite and ability to eat. Obviously, this child must be assessed medically, but she may very well be at the point when an NG tube must be placed for nourishment. That's what happened with my daughter at age 8, and she needed to stay in the hospital for 5 days until she was stabilized medically and her anxiety medications started to work. At that point, she was admitted to a day treatment program for intensive feeding therapy and I was taught to do her NG tube feedings overnight. The NG feeding tube stayed in a month until she was taking in enough by mouth to sustain herself. These sorts of food phobias are very serious and need to be addressed seriously.

 

[DaisyFace]

Jena--

I have to vote for the local place - first and foremost, because they recognise that your daughter is MORE than just an eating disorder. in my opinion, you cannot treat just one problem and send her on her way...because all the other issues that are contributing to the non-eating will still be there.

This would be my vote regardless of the distance.

As to visiting/non-visiting...neither place is going to permit you to hang out by your daughter's side 24/7. I think you will have to decide to trust their program...

((((hugs)))) I know this is hard...

Stay strong!

 

[klmno]

I get that, SW, but it's my understanding that she isn't quite to that point yet. She might be at a point where she has lost her appetite and it will take therapeutic interventions to help her get back on track, but the appetite can come back- I know mine did and I was under 85 pounds. While remoaval of stressors made my appetite come back, dealing the the phobia will probably be the long term answer for Jen's daughter. I feel certain that any reputable place for eating disorders will not let her deteriorate too far if therapeutic methods aren't working before they put a feeding tube in her- but if they still think less intrusive methods can work, in my humble opinion, I would try them first if it was my child. That doesn't mean I disagree with your decision for your daughter- there might have been different specifics such as a younger age, more deterioration of health, less chance of therapeutic methods alone working, etc.

I am speculating, too, that this place is telling Jen the best they can over the phone but of course, they will have to evaluation her daughter and form a specific plan once she gets there. If she shows up and they think she needs a tube first, my gut tells me they would tell Jen that.

 

[Jena]

hi

i got to sleep for an hr or so. place accepted difficult child and insurance fully covers it. i have a walk thru and to meet all their doctor's on monday at ten before i decide what i'm doing. she is very young to walk away from and so i want to make sure this place is all i want it to be for her. husband is heading up with-me. its pretty far away from us. 3 hours with-o traffic.

just putting it all thru my processing now slowly. she slept all day long today and will probably be up all night. our house is officially upside down.

small yes their dealing with-eating issue first yet as you know difficult child has alot going on so their going to run into alot while trying to do that.

klmno yes your right if it gets to point she won't eat than they'll do tube and they stated they aren't allowed to medicate till they talk to me. i gotta go up there and see what it's like. it's a highly regarded hospital so we'll see. it's not a pysch ward either it's a clinic. which i like. yet walking away from her i do not

 

[smallworld]

Jen, I'm glad you got everything set up. I hope this clinic meets your expectations.

klmno, at age 15 I had a milder form of the food phobia that my daughter had. I was down to 82 pounds at 5 feet. So I have some sense of my own what this is all about. My daughter was down to 30 pounds at age 8 (I actually forget how tall she was, but she's petite). It was very scary. The doctors and therapists worked with her for weeks to try to get her to eat. The only things that worked were: 1) restoring her nutrition through an NG tube and 2) reducing her anxiety with Zyprexa. Obviously, every kid is different, and I can't compare my daughter to Jen's, but if I had to do it all over again, I would skip all the begging and cajoling to get her to eat and go right to the medications. Once her anxiety was in check, she ate easily again.

 

[klmno]

I don't blame you, SW. We all would do things differently for our- or pertaining to- our difficult child's with the benefit of hindsight. If this is a good clinic that Jen is going to look at, and they are people who would use the tube if nothing else works, I still think it's worth a try. Maybe Jen can see how things go for a week or so and if her daughter drops to below 100, tell them she'd rather go ahead with the tube. I don't know- I think she's doing the right thing to check those things out and then make a final decision. Jen- that actually might be worth asking them just to make sure that they aren't too head-strong about therapy alone and against a feeding tube if you decide she is not responding quickly enough.

 

[TerryJ2]

I'm coming in late to this, but it sounds like a good plan, especially since insurance covers it and it's closer to home.
I'm glad you got 1 hr of sleep but wish you could get more!

 

[Jena]

Hi.

thanks guys. terry thanks. I haven't read your posts i'm so sorry. i see you liked difficult child's new school though!? which is great. good's going to come from bad. i love that so hopeful.

i wanted to do walk thru tmrw but i wanted husband with-me to give me his thoughts on it also. i'm giong to grill them bigtime about the food phobia ask their approaches, etc. because their big with-aneroxia and bullimia. hence her having to stay within her calories for the day. i said hello she isnt' eating. by the way she got down 5 bites of mac and cheese tonight. it took about 40 min. but she got it down. she put it in her cheeks held it there till it got really mushy than drank alot of liquid to make it go down.

she'll be off remeron tonight. i went down to half of the 7mg last night and tonight i'm pulling it. tried to reach pyschdoc but no good. tried peds also no good.

i took care of me a little tonight. husband made a ton of vegetables last night for dinner and put them in tupperware. so i took them with-diced up tomatoes garlic and oil and put it over linguini. it's a start. than i'll get my blood work friday and hopefully a medication to reduce all my swelling would be soo nice also.

 

[Kjs]

Does your daughter see a therapist? If so have you spoken to them about the options and what they thought? If she is seeing a therapist, maybe that person can see a different picture.
Myself, I would have a very difficult time leaving difficult child alone. But I know that if I were there, difficult child's response and willingness would not be the same. He would end up pulling me down and making me feel bad at some point. I know this is a difficult decision. When is visiting hours? Is it daily? Weekly? I definatley have the experience with the anxiety. Do you think the anxiety plays a big picture in the eating? Personally if we were dealing with difficult child and he had anxiety about something, there is no way we could get past that. If the anxiety is treated as well, it may help in the treatment for the eating disorder. This has got to be a difficult decision. Sending good thoughts.

 

[AnnieO]

First - lots of hugs. I have zero experience with this. But from what I have read, actually the closer place sounds better. It sounds like they will do the tube if necessary, but it also sounds as if she isn't totally without nutrition (5 bites isn't much, but it's something - will she drink chicken broth?).

Plus - either place, she will be on her own. You're not walking away, either way. You're stepping up and getting her help.

More hugs... I cannot imagine...

 

[totoro]

I am just glad you HAVE and option. I can see both sides and I guess I would go with what you can deal with right now as far as what is going to keep all of you sane while helping difficult child.
It sounds like OR would just send you into a spiral and possibly make the rest of the family worse... this place may have the same options for difficult child in the long run?
Even though you can't "stay" with her, would you truly get to stay with her in OR. I am sure you would not get to participate in her treatment?
Visitation will be good once you get into the swing of things and you can see that she is responding to treatment.
It is not going to be easy no matter what you choose. Lets face it, she needs some serious help and this is not something that any parent wants to do. You are amazing and you are strong.
Just make sure whichever place you choose truly understands what she needs and what every one is expecting. Sometimes things get muddled up in the stress of it all. And make 100% sure that you insurance is OK with it!!! Triple check with the place that they have pre-authorization...
She will get through this and so will you.