difficult child update/hospital today

Discussion in 'General Parenting' started by Jena, Oct 14, 2010.

  1. Jena

    Jena New Member

    hi

    the continuing soga. wow i should write a book that no one would ever buy :)

    met with-a whole team, didnt' expect that. guess my peds being neighbors with-this guy was highly beneficial. there was a peds who specializes in eating disorders and who was fully aware it was a food phobia, a pyscholigst, a wholistic practioner, another woman who did a bunch of cognitive stuff on her.

    long long time 4 hour meeting with-difficult child in the room. history, food history and eating (which last hospital never did), alot of info given. all the medical tests done as well as weight which is now down to 96.

    at the end of the day choices were either feeding tube or them letting me handle refeeding from home. peds told them i had a little experience with-other stuff yet not refeeding. ok so difficult child was given a choice feeding tube and full hospitalization or home and refeeding with-special shakes to start that holistic person would give me recipes for.

    as soon as hospital was mentioned difficult child cried, begged, pleaded it was very sad. she was also very overwhelmed with all the diagnosis's talk of her past illness. it was alot in that small hot room for even me for 4 hours straight, than half hour with-her out and me alone with them.

    p.s. i'm home with-her. got ingredients for all the shakes, went to store on way home to get bunch of junk. therapy wont' be added till nutrition is in. they said her brain wont' be working well anyway we gotta focus on refeeding that's first and foremost! yay!! i thought.

    also i said to them i have a gut feeling that she has sensory integration disorder, always did, yet just made accomodations for her and was so focused on all the other junk with her. well after meeting with-her, history with social, emotional, food preferences when did eat, way she presents, acts etc. they said she is. after she's back to normal gotta go to a sensory guy next.

    heading back to hospital on monday with-her for check up on how it's going, weigh in, and discuss progress and check rest of bloods and tests they ran. deal is first shake she refuses i put her in truck and she gets admitted.

    got home made the thing she picked off the list. did color therapy and some visualization with her and meditation breathing. she cried an awful lot. yet she got it down in under two hours :)

    she is petrified of food i've come to see and learn. it's as if she cant' be around it. so this is my new life now. we have exact times for shakes. if i'm out i'll have to prepare them before i leave and put them in a thermos. she cant' do any physical activity like parks, horseback riding, anything except small walks until she is stable again. and no sleepovers or visitation with dad!! ya ya ya ya happy dance!!

    gotta call school tmrw and work on getting tutors in during day. i'm nervous yet i'm praying it'll work. it was alot of work that first shake. now we get a reprieve till 7 when she has to work on the next one.

    what do you guys think???

    i'm kinda really tired
     
  2. Jena

    Jena New Member

    but really happy she is home and all the medications are beginning to really be gone now each day she seems more focused and alert. :)
     
  3. smallworld

    smallworld Moderator

    Jen, sounds like a good plan. As long as your daughter knows she will be admitted if she can't eat (not as a threat, but as a natural consequence), you have a safety plan.

    Is the doctor talking about any medications to reduce her anxiety? It seems to me that will help get the shakes down. medications are not inherently bad.

    M had sensory issues around food, too. They diminished once Zyprexa kicked in.

    Hang in there. Hope the refeeding goes well.
     
  4. Jena

    Jena New Member

    seroquel, right now 25mg. mite increase tonight a little. apparently my new pyschiatrist went awol. so gotta start hunting down new one tmrw. i'm surprised she does have that sensory integration disorder. i kinda always knew yet never got formally tested for it. first shake down. oh man 2 hours it took and a whole lotta crying.
     
  5. HaoZi

    HaoZi Guest

    Sometimes it's one day at a time, sometimes it's 5 minutes at a time. Glad to see progress :D
     
  6. shellyd67

    shellyd67 Active Member

    Jena I would read a book if you wrote one ! Believe you me there are MANY people who go thru the same challenges we do. It might be a bestseller ! Anyhow, I keep you all in my thoughts and prayers.
     
  7. Bunny

    Bunny Guest

    It sounds like alot got accomplished at the meeting today. And I'm glad that she knows that at the first refused shake she is going to be admitted to the hospital. I know she is afraid to eat, but she may be even more afraid of being sent back to a hospital. What kind of things did the holistic person tell you to put into the shakes? Two hours to drink one shake? I hope that it gets better from here for both of you.

    Pam
     
  8. Jena

    Jena New Member

    hi guys we took a ten min. break. clearly i wont' update everyday i'll drive everyone insane :)

    shakes are rough, bigtime. the consistency the thickness. the first round was easy it was hot chocolate. i had to melt chocolate, butter, add in vanilla syrup a few other things and it was warm. she likes warm soothes her "throat" ugh! that she is still stuck on is lodged with something.

    we began shake at 7. it had fruit in it. i had her help make it thought put fun into it for her. needless to say she sat there crying for half hour with it. so at 7:30 i sat with her and did meditation breathing, visualization threw in the color therapy thing. helps give definition to the breaths when their colored for her. she invisions white (pure, health, happiness) than we added in a slide at the park which is slippery for her throat. than breathing out the anxiety, her sore throat, all her worries. yet it's rough we have to stop between each sip to do this. so we've been at it since than. only got a quarter of it done. it's 12 ounce shake. so we have a long night ahead i think.

    gave her ten min. break to call her wonderful father, yea yea and go on easy child. this is going to be alot harder than i imagined. how will i fit in tutors, housework, other kids etc. i guess as time goes on i'll figure it out. gotta head to library over weekend to see what books i can pull out to try to find other means to assist her. she can't do it alone. she cries the entire time alone and shakes and anxiety goes up. i'm giong to increase the seroquel tonight. it was only at 25mg. and cut the next 25mg pill so hopefully anxiety will be less for tmrw.

    any other ideas i'm always open. yet at end of day i would of gotten in her 750 calories!! that's more than she's had in I don't know how long.

    i dont' want her back in hospital and she hasnt' clearly refused at all. she's just struggling very badly.
     
  9. smallworld

    smallworld Moderator

    Jen, I know you don't want to hear this, but she needs medications to make this happen. I know from first-hand experience. Zyprexa has a chance of making her better. In a few small clinical trials, Zyprexa has been shown to help with anorexia and other eating disorders. It's what the clinic in Oregon prescribes for choking phobias because Zyprexa gets rid of the distorted thinking around eating. If you want your daughter to get well, you should at least ask the psychiatrist to research Zyprexa.
     
  10. Jena

    Jena New Member

    i know but pyschdoc went AWOL. so i only have seroquel and that's what i gotta work with for now. if i raise it it'll help alot though. she was only on 25mg which is nothing for her. when i have time to find new psychdoc i'll get the other for right now gotta work with-what i have.
     
  11. klmno

    klmno Active Member

    Jen, I have no idea what the answer is. The behavior mod approach didn't work, the medication approach seemed to wipe her out, the catering to her seems to leave you feeling like she's overdoing it and drained. What do you think the long term answer is?
     
  12. Jena

    Jena New Member

    maybe monday when i head back they can write script for her. peds and other doctors are working with-me on monitoring the seroquel levels for now because we cant' get hold of the stupid psychiatrist. jerk.
     
  13. Jena

    Jena New Member

    klmno NO. she got down almost 700 if i can get this shake down her. that's awesome. yea it's giong to kill me and shes' holding up ok. i just gave her a break. we'll switch medications on monday like small said. for now we have the seroquel. this is going to be a very long road. she hasnt' eaten in so long it's giong to take time and just a whole lotta patience and love. yet she's a smart girl, once medications in place she'll adhere to the things we're working on now. she already started to during it while i sat with her.

    no one helped her at that hospital. no one took the time to really talk to her, help her. they just shoved food infront of her drugged her up let her sit for ten hours in same chair. so now we gotta reverse the damage that place did. she hates hates food now due to their animalistic tactics on her. oh man i rage when i think of it.
     
  14. klmno

    klmno Active Member

    No to what, Jen? I said I don't have the answer. I don't know what answer you think she needs that hasn't been tried except for the feeding tube. Have you developed a plan yet in case she gets a few shakes in her but then doesn't progress from there?
     
  15. smallworld

    smallworld Moderator

    Jen, you're doing great. Keep going. That's what we had to do with M. Once the refeeding happened and she gained her weight back, we started introducing other food. But FIRST she had to gain her weight back. That's the first step.
     
  16. JJJ

    JJJ Active Member

    Jena, you are doing great!!

    While Tigger's food issues were never this severe (3 days is the longest he's ever refused to eat), one thing that did help was to put his favorite show on tv and often he would just sipping/eating and often we could get food in him before he realized it. Maybe watching a calm show can distract her enough to allow her to drink more of the shake?????

    Zyprexa was a great medication for Tig too...Seroquel is in the same family so that should at least help until Monday.
     
  17. Jena

    Jena New Member

    klmno i don't know what no was for lol. i was yelling at dog at same time. i'm kinda shot.

    plan is if she doesn't drink the shakes i admit her for the feeding tube. have to start somewhere. i'm sure once i get the right medication in place and lower the anxiety in time it'll come. i don't expect overnight at all. this has been a long time now. this is what it's giong to take, working with-her to help her de stress help her use the tools she has been taught, and keep working on it each day. day by day sort of thing. i haven't even though past the liquids yet. i try not to project i just stay in the day. i'm just really happy that she's gotten down that amt of calories and she has actually burped. sounds really funny. yet it's the first burp in umm 4 mos.

    thing is before she went totally no food she'd been cutting down severely since end of may june. we just thought it was her adjusting to no seroquel at the time and decrease in appetite. i guess if i gotta sit with-her at each meal that's what i'll do. rest of the house will just have to figure it out, no one's a baby here. their giong to have to learn how to do for themselves. scarey but they will :)
     
  18. HaoZi

    HaoZi Guest

    Some people recovering from EDs move to baby foods after the liquids, might she be more receptive to those than jumping straight to regular or typical soft foods when she gets to that point?
     
  19. Jena

    Jena New Member

    that is a fascinating idea. husband said same to me the other night. thing is my difficult child would kinda like to go back to the womb if possible lol.......so i'm sort of afraid of offering up some gerber products :)

    i could though put them on a dish. I don't know i'm trying not to think about step 2 yet, step 1 is kicking our butts :)

    great idea though!!! thanks!
     
  20. HaoZi

    HaoZi Guest

    Due to food allergies my parents had to make my baby food themselves in the blender. Cheaper with more control over what goes in it, as well as how thick/thin it is and no Gerber labels. Those Fruit2Day drinks are decent when she's ready for chunky juices.
     
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