difficult child update

[Jena]

hi

she still isnt' eating. spoke to her peditrician today, we missed appointment because difficult child was up all night and finally crashed at 8 a.m. pyschiatrist rescheduled me for tmrw.

they seem to feel that because she hasnt' eaten in so long now if she suddenly began eating shed' get very sick. so, i found a clinic in oregon for food phobias etc. yet their trying to find one here in n.y. and closer for us to go to.

so it seems as though the general consensus (can't spell for ***) is that she'll go into hospital either day treatment or admit into clinic which isnt' pysch ward. i'll have confirmation tmrw night or thurs am. on that.

me, i'm totally swollen. it's not good. arms, knees, and now new nodules on my feet which are making walking interesting somewhat, i am not sleeping that well and overall i feel like a piece of garbage. my hearts beating away even when i think i'm in calm mode which keeps me up at night. it's like my bodies falling apart on me lol. i'm laughing yet i'm a wreck.

going to dr thurs morning to get some type of medication to keep me calm, and also get script to finally diagnosis me whether it's ms or rheumatoid arthritis that is ripping into me at this point. so we'll do blood for arthritis first cause that's easy. bayer and over counter stuff isn't working anymore.

 

[Jena]

yet i am confused about one thing. her new therapy was supposed to start last week, yet she was in e.r. than today we had appointment. yet she's sound aslp. pyshciatrist told me it won't work now anyway. i was going to rip her out of bed and bring her yet i think what's the point now she'll be groggy and it wont' work anyway. than if they decide to put her in day treatment place than she wouldn't be dealing with-this therapist anyway........

thoughts/?

 

[smallworld]

I think it's pointless to start with a therapist now if she's going into a day treatment program or a clinic. The theories could be very different and even contradict one another, which would just confuse difficult child. There's always time to start with a local therapist once difficult child leaves day treatment or a clinic and you know what her needs are. Keep it clean at this point -- one therapy at a time.

Hang in there. I'm rooting for you and C.

 

[Jena]

hi

i didn't wake her today. I let her sleep, she just got up. I spoke to dr. at the clinic far away in Oregon. I said to him am i jumping the gun by bringing her out there? He said no not at all, she's lost 20 lbs. is not eating, isn't in school, and medication that you started 6 days ago doesnt' seem to be working. our approach is diff than her pyschdoc's we do not believe in forcing child to eat, our approach is diff. we medicate first with zyprexa, than we put feeding tube thru nose after she gets comfortable just to take care of caloric intake and than our special therapists work daily with-her 3 meals a day to get her eating again. most kids by week 3 are level and eating three meals, our kids have no relapses at all, and most of all they leave well.

just sounds so drastic to me. yet what i'm diong isnt' working at all. he said valuable time is wasting away. he sent me intake forms. id' have to leave home for a mos. that scares me. new marriage that isn't doing taht well due to the increased pressure over summer with-difficult child. we're maintaining yet it's scarey and leaving easy child. i told him i just dont' want to make this more dramatic than it is. he said it is dramatic but here it's no big deal, she'll meet kids just like her. it'll be fine and she'll be healthy in no time.

thoughts???????????????? please???????

 

[smallworld]

It's drastic to go all the way across the country, but the treatment sounds completely reasonable because it's exactly what we did with M -- Zyprexa plus feeding tube plus intensive feeding therapy. It's too bad you can't get anyone to do that with you here on the East Coast. Is there a clinic here that will do that? Your daughter needs something different to happen now because there's a very good chance she's not going to get well doing what you're doing now.

Hugs.

 

[totoro]

I have no experience with this- I would research the place. I would be googling anything and everything about her issues and looking for anything online regarding support for kids with eating issues (smallworld might know) and see if they know of places or know how this place in OR is?
I would search out any info on how others in your place handled this situation? I would think a site that specialized in this issue might be good.

I am so sorry and I too am rooting for you.

 

[Jena]

small

peds thought there was a local place yet there wasn't. he was hoping. i spent morning searching as well. we are at the point now where we all are like ok this isn't working, what's next?? you would think in new york there would be a treatment place, right?? haven't found one yet that does admit yet not in pysch ward and does what you guys did and also what c needs now. if you find any please pm. if i gotta do it i gotta do it. husband will be ok with it. it would just sux being away from him and easy child and alone out there. yet i gotta be a grown up right??

 

[Jena]

toto thanks sorry missed yours!!!!

 

[smallworld]

Jen, I just read the site of the place in Oregon. The doctor does know her stuff from what I can tell.

There's an organization called the National Eating Disorders Association (NEDA). Why don't you give them a call to see if they know of treatment places for Food Phobia, which is very different from anorexia and bulimia -- and in fact, much rarer. Let me know if you can't find the contact info for NEDA.

 

[Jena]

K. thx. i thought youd' feel as i did once you read it. their approach is quite unique and very right for C. i dont' wanna freak her out ya know? and these places here might just do that. they even take our insurance this wont' cost anything except a few bucks a nite to ronald mcdonald house for me to stay there when i dont' Speech Language Pathologist (SLP) in hospital rm. with-her. and husband if he flies out with-easy child to see me which i'm praying he does. a mos. with-o him and my easy child yuck!!! i can't even sleep till husband is in the door i've turned into such a dependant baby. but if i can nip this in the butt than get back home and she's well and we can begin again searching for answers for normal stuff and it would just take 3 weeks sooo worth it.

 

[Jena]

oh by the way all the blood dr ran to check for other medical stuff came back negative. no problems at all. excellent cbc's and everything else. it's all emotional. she cried when i told her. than i said there might be a place husband and i are workign on it it's far away but i think they can help. her mood elevated in about ten minutes to a smile.

 

[Jena]

contacted them. it's a no go i think for most part. they gave me name of place i'm looking into lol. way too funny. the other place is in New Jersey yet their more aneroxia bullimia and nowhere for me to stay...... plus their approach isn't like that place i looked at. oh man am i allowed to write names of places inhere?? sorry