todays the day

Jena

New Member
hi


ok, today's the day refeeding specialist is coming in the room in fifteen minutes.

let's all say a prayer this works. here is hoping. i'll update after :)
 

Jena

New Member
i'Tourette's Syndrome horrible. i'm in parents lounge welling up. she cried pushed food away carried on. woman asked me to stay in and help. help? i did it all. the whole thing. i really should become a social worker after this. i hit my wall with her and told the woman it's up to you now i have to go.

difficult child said i'm not eating ever i'll live off a liquid diet i'll die if i eat. you cant' make me. on and on it went. according to doctor's she was in place. I don't know what's going on in there now. i had to leave it
 

DDD

Well-Known Member
Wise choice. No reason for you to be the caregiver 100% of the time. They have a job to do.

Sending caring hugs yours way. I'm sorry. DDD
 

susiestar

Roll With It
(((((hugs))))) If she just went along she wouldn't be a difficult child, would she? It is awesome that you left the room - this is something you already know you cannot fix. It is time to let them do their job, not time to do it for them and make her eat yourself. This is the ONLY way they will see what you deal with daily, hourly, minutely.

I am sorry it is so rough on both of you. her fears of dying if she tries to eat are not something she is making up or pretending. It has to be hard to see, and hard to understand, but they are going to HAVE to deal with this like a real PHOBIA not just defiant behavior. Do some research on exposure therapy and suggest they look into trying that with her, rather than just telling her to try to eat. It might do a whole lot more than what they are doing?

Many many hugs to you. I am SO sorry that you and difficult child have to deal with this.
 

Jena

New Member
it's ok and thanks. i told them titrate medication higher we arent' at difficult child's magic number. I have absolutely no problem walking out of the room. i do it all day long. i'm alot tougher this hospitalization than i was last. i'm thick skinned now.

the girl and yes she was a girl and in my own opinion not trained enough to handle my kid asked me to stay. than said after do you do this for a living?? Ha real funny. awaiting word from docs. 7.5 ain't gonna do it.
 

DDD

Well-Known Member
Does it make sense to just "offer and then withdraw"??? What did the "feeding specialist" say when you met with him/her?
DDD
 

Jena

New Member
hi

i posted on another thread. i got her to eat tonight. it wasn't alot yet we did it together. basic bite chew swallow junk i learned from refeeding therapist in long island. here's the deal and yea i'm confused the girl that met with her just sat with her didn't work on the basics of bite chew swallow at all. it's soo odd just kept saying oh it'll be ok, etc. difficult child even said she does nothing. i only copied what the woman back home taught me.

so i get the structure they can give her with day clinic therapy etc which is awesome, and fact that their stabilizing her in the hospital yet the piece their missing is refeeding the kid. i mean in all honesty i could of admitted difficult child into a long island hospital gotten her medically stable than worked with her. now hospitals awesome hands down yet what this program is missing is someone that knows how to refeed or the kids they've worked with just aren't as bad off as my kid.

there was no way some cute little girl all of 21 walking into a room would get difficult child to eat just by stating oh come on it'll be ok. i was sooo thrown. so yea im kinda confused,maybe just tired. not sure. yet all iknow is i gotta be back there at 7 a.m.to get her to eat again.

i get it's the maudsley approach and all "family based" yet where' the professional. granted i've learned alot more about food phobia than i've ever wanted to know yet now they said their calling me in at every meal! and telling me how great i am wtih kids have i done this before? have i worked with kids before? UMM yea mine for 8 lousy months doing the same exact thing
 

DDD

Well-Known Member
I guess you are, amazingly, ahead of the times. On AOL front page today is a picture of a little girl who only ingests very limited food. In the article is says that Duke is just beginning to study this disability. No wonder you have had to travel thousands of miles to get help...or try to get help. You're ahead of the curve, Jena.

I'm still eager to hear what the "food specialist" had to say. Surely he didn't say "leave it to Mom" and we'll send in a sweet young thing to be a cheerleaders. Yikes. DDD
 
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