i'm pulling difficult child out

[Jena]

was going to spend weekend gauging it. i can't do that anymore. just got off phone with-difficult child who has not recvd. any therapy at all since there. she hasn't eaten anything since there i double checked with-nurses. so head pyschdoc lied.

she is being punished and sent to room when not eating. the nurses were discussing their date from night before infront of difficult child as she sat there struggling for two hours to eat.

this place is not for her. called peds he's working on getting her into food phobia clinic at hospital on long island.

 

[Andy]

I am sorry this has been such a nightmare for you and difficult child. I hope her peds doctor can get her into the other clinic ASAP.

I know you are in moment to moment warrior mode right now. Keep up the battle!!!
At least you were able to get a tiny bit of food into her before this. I hope she will start trying again once you pull her out. Too bad this facility has turned it into a power struggle which we all can tell them does not work on any kid - especially our strong willed difficult children.

 

[Jena]

yea i'm sitting here right now debating to pull her now or when i line up another. i am nervous she is not eating, and i am not a dr. to care for her when she is unstable. i also do not have a script for seroquel in my hand to fill and am 4 hours from home right now.

so, i might have to leave her there to be tortured at least till tmrw so i can try to find a back up. i am def nervous about bringing her home to not eating and not sleeping again due to fact i have no medications on me. this is sooo ridiculous. difficult child actually asked the nurses to help her and they wound't they just said eat it or dont' see mom. so she didn't eat it she couldnt'.

 

[smallworld]

Jen, I'm so sorry.

I hope you can get her the help she needs.

Stay strong. Hugs.

 

[Jena]

hey it's ok. you know it's always a battle one way or another. been on phone for two hours havent' found a clinic yet within reach that deals with-food phobia's. i have conceeded to have C stay there for the weekend becauese to be honest i'm afraid to pull her out due to fact she isnt' eating and have her in my possession in that manner. it's unnerving as i'm sure you know.

so, i have mtg. set up with-head pyschdoc and therapist for monday a.m. early with my ex who took the day off. if they will not give her daily therapy as well as have the staff assist her in re feeding and they will not bend than i will discharge her monday morning. i was going to fly up there now than i had to put the breaks on and say ok she isnt' eating, and than i'll have her with-me not eating. at least there the medical piece is in place so that they can assist her with-vital signs, etc. to make sure she isnt' going to go down again. i dont' have that component.

so unfortunately i'm going to have to bite the bullet as is difficult child thru the course of the weekend. i am going to attempt to contact the nurses' station now to explain to them her diagnosis and to see if their willing to assist her with-the eating.

 

[klmno]

Jen- why don't you sign a release form so the therapist there can contact whomever gave her the diagnosis of food phobia. Maybe that would go further. How did the ins issue turn out?

 

[Jena]

klmno i did just that. yet the head pyschdoc is being a witch and won't budge on the approach with-difficult child. insurance well they re scheduled the appeal till monday. so on monday we will know if she stays. crazy right? i'm fighting with-these ppl, while i'm fencing getting her out, while i'm begging insurance co to keep her in. it's like multi layered and totally confusing.

i just called nurses' station got head nurse on flr. i told her difficult child's diagnosis. she said oh ok i didnt' know that. i said my kid wants to eat, yet she is afraid because she thinks she'll choke and die. if someone gives some theraputic talking imagery and verbalization to her during meals and is patient she will begin to eat. the threatening is just raising anxiety.

her response. thx you so much for letting us know, we werent' aware and i will tell my team to do just that.

wtf is all ihave to say yet again. my coin term for the week.

 

[LittleDudesMom]

They didn't know that?!!!

Hello.

Sorry Jen.

Sharon

 

[Marguerite]

That's one point I would definitely raise with psychdoc - why did nursing staff not know? If psychdoc says, "But they did know," then you say, "They told me they did not know. So whatever reason you say they did not, whatever the communication method - it is not actually as much in place as you believe. NAd if you internal communication methods with other staff are so flawed, how can you assure me that my daughter's medical needs are being appropriately managed?"

Deal with practicalities, try to not let emotion blind you to the facts and the physical issues. And don't let psychdoc deflect you - they are very good at that, especially when backed into a corner.

Marg

 

[Wiped Out]

So sorry this has turned into such a terrible experience.

 

[BusynMember]

What is the difference between food phobia and an eating disorder? Does she have anorexia? Then wouldn't she be better in a place where they deal with patients who have eating disorders?

 

[klmno]

It's my understanding that it's similar in the sense that it's a phobia either way- either a fear of being overwieght/looking bad, or a phobia of the food or choking. But maybe the treatment is different depending on the specific fear, I don't know. Then there are other types of eating disorders but those are the more common ones. I think.

 

[smallworld]

Here are links to explanations of food phobia and its treatment, which my daughter M went through at age 8:

http://www.kartiniclinic.com/foodphobia/signs
http://www.kartiniclinic.com/blog/Rethinking-Treatment-Food-Phobia-and-Fear-Swallowi
http://www.kartiniclinic.com/foodphobia/treatment

As you can see, it is different from anorexia nervosa. We followed a similar treatment plan to what is described here, and M was cured of her food phobia. although she still takes psychiatric medications for anxiety (she was an anxious child before her food phobia developed).

 

[Jena]

hi

i'm totally beat up tonight. i think i'm just in shock mode at all of this. i went tonight and when i showed up difficult child was still in the dining room since 5:15 trying to eat. she struggled for two hours until 7:15 to get down a few ravioli. the nurse eventually gave up and said just hide it under the napkin! she than ate ice cream which soothes her throat. i got there and had to be told to leave and go wait outside till she was done. i couldnt' hold back the tears anymore. a kid who once couldn't stop eating cannot stand the sight of food. so i sat and cried alone in this waiting jail room.

the nurse came out later and said ok she's done. i said to her how was it? she said she really struggled. i said what did you say to her when she was struggling? your daughter said she had a sore throat i dont' know why i don't think she's sick?? again WTF. i said do you know what's wrong with-my daughter?? she says umm no. i said she has a food phobia and is afraid to eat because she thinks she'll choke and die if she does. OH says the nurse.

ok, point made right there. Enuf said.

i pulled myself together and went in and hugged her. that skinny little body. wow i love this kid so so much. all she goes thru for so many years breaks my heart. she was a diff kid tonight though, the seroquel is offically settling in her system. she was giddy, lighthearted, a well C. medications she just cant' live with-o them. yet she was hypomanic. and i bet sleep will become a problem tonight now, and than they'll have to go up higher. my ex asked me why is she acting loopy? i said she's medicated. she got larger hit initally than i've ever done, 25mg to start. i started her years ago at 15mg. so it penetrated system quick.

i'm sitting here in this nasty hotel room looking like **** by the way i dont' even recognize me anymore just shaking my head and saying hmm this isn't my life? gotta be someone elses lol. whoever she is she'd better come and handle this........... ha ha dont' worry i'm not seperating from reality. just wish i could for a while.

gotta be bk up at hospital at 9 tmrw. my mom's coming on sunday. i can't wait to see a familiar face i'm so lost in this. my grounding force, my home really helps me. without that i'm kinda like huh... where are am in this world with no left turns??