difficult child update yet again

Discussion in 'General Parenting' started by Jena, Oct 10, 2010.

  1. Jena

    Jena New Member

    yup me again. i'm going to stop apologizing for posting so much :)

    got some well needed rest last night and easy child and i went for manicure today and went to book store and i actually ate something today.

    so, ok difficult child -

    -has not taken a shower or changed her clothes since wednesday.
    -she refused medications last night, yet nurse coaxed her into it today
    - she has stopped drinking all liquids and eating all food
    - claims her throat is closing up now and cries infront of food for two hours afraid to eat it.
    - all she does for 2 days is sit infront of food cry that she's so afraid to eat it, and than climbs back in bed and continues to cry and sleep on and off.
    - her sleep is being disturbed even though she's loaded up on medications.
    - she won't talk to anyone basically other than cry and tell them please help me i'm afraid i'm going to choke. my anxiety is so bad i can't control it anymore.

    what are our thoughts now on doctor's radical approach?

    i am waiting it out. obviously no visitation again tmrw and for the near future. put call into her pysch that will be treating her once out (after care) and therapist. they both stated their calling facility tmrw. i put two calls into other facilities that strictly work on refeeding her with-zyprexa medication in place.
  2. Jena

    Jena New Member

    by the way i expected it to get somewhat worse yet wasn't expecting a full shut down and she will decompensate pretty quickly. so wonder what's nexta feeding tube and then they'll have to start from point a all over again.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    This is my personal opinion only.

    Your daughter can get VERY sick by not eating. I don't think the approach is good enough. Have they done any testing on her to see if she is deficient in vitamins, if she is anemic, if she is healthy? Has her heart been tested to see how it's functioning? Are t hey watching out for her physical health as well as mental health? If this were my daughter, I would want her to get healthy first and that means a feeding tube. You can not choke on a feeding tube. My brother had one because he has severe Crohn's Disease and was so malnourished at 19 that he collapsed and almost died. They monitored his mineral/vitamin intake (he also needed a blood transfusion) and he got more healthy. I would not like this hospital's one-trick-pony approach. Your daughter is getting weaker and weaker. Screw the defiance...her health is in serious jeopardy. Isn't this a medical hospital too?

    I would think that she may be in a better frame of mind to help herself if she weren't so weak and sick and hungry. Although she has a phobia, I am wondering if she also has anorexia, which, I've heard, has to be approached on many levels, not just the psychiatric one. If this were my daughter, I would put her somewhere that is more concerned about getting her health stabilized first then helping the psychiatric problem or doing both together. This approach so far is not doing any good. She isn't getting any nourishment if she isn't eating. I am not convinced she is being defiant. I am wondering if she just isn't terrified to eat, although she knows the dangerous game she is playing.

    JMO. Hugs and hope things get better for your precious daughter very, very soon.
  4. smallworld

    smallworld Moderator

    Jen, do you know how much she weighs right now? Have they tested electrolytes, blood, urine, etc?
  5. Jena

    Jena New Member

    funny you should say that. i spoke to her peds' and him and i discussed several topics:

    refeeding syndrome - which can occur on 3 to 4 days after refeeding has begun either via liquid or solids. whereas kids electrolytes can fluctuate so greatly from being deprived to being hydrated it can infact well kill them.

    muscle atrophy - which causes swallowing to become extremely painful due to a fungi growing underneath the esophagus after a child has starved themselves far too long.

    depression - difficult child's depression is at it's peak. she has given up right now. hence the non showering, non ingesting liquids, crying, sleeping, etc. when that happens it isnt' a standdown its' her depressed. as many of us know a BiPolar (BP) depression can be one of the worst black holes to go into.

    also the doctor never called me back last night or today regarding the severe increase in seroquel or the add on of xanax almost that would of left difficult child violent and a wreck due to a past trial.

    they supposedly do vital signs yet i have seen no one do an ekg since the first day that is 11 days ago.

    i'm ****** and ready to do a discharge. this isnt' about not detachting it's about a man (dr.) who focused too much on her bipolar and pitting himself against her yet didnt' focus enough on simply refeeding in a slow gradual manner which she was diong when he was still allowing us to see her. yet stopped that one day (total defiance) when i headed back home and she knew it.
  6. smallworld

    smallworld Moderator

    Not eating at all can also increase depression. That's what happened to M.
  7. smallworld

    smallworld Moderator

    Can you discharge and then admit her to a medical unit just to get her stabilized medically?
  8. Jena

    Jena New Member

    nurse admitted to me on the phone, i forgot to mention if there is no break by tmrw night or tuesday you should look into other options. so, i'll call new place tmrw. go drive and check them out and have them on standby for tuesday if she doesn't start eating by than.

    sounds like a highly reasonable plan to me. enough with the craziness i feel already. been consistently inconsistent from the beginning with these guys. doctor's also i have come to learn have extreme ego's some of them. i think her dr is one of them. that kinda i'll fix you mentatility lol. oh man he's never dealt with-a difficult child before like my little girl :)
  9. smallworld

    smallworld Moderator

    Jen, I'll be thinking of you and C. Hugs.
  10. Jena

    Jena New Member

    small - i called nurse who has become my ally on the evil side :) she is running an ekg and a urinalysis on her. i told her she's on lithium we gotta check the levels. she said your right. i went in and prompted her to wash up, i'm cleaning her bed and i'll run the tests. difficult child right now is calm i talked to her alot. shes' an amazing kid. she said its' just a crazy weekend it's the national eating disorder conference in manhattan today so her dr has been running back and forth to city all day and here. aw poor guy and i care why??
  11. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Keeping you both in my prayers.
  12. Marguerite

    Marguerite Active Member

    Good. Keep posting.

    As for this place - I was a little concerned when the doctor said that it is possible to be stronger than the child's stubbornness. Not in my experience, it is not something I count on. And it is now looking like he underestimated difficult child's strength of will.

    Where possible I feel battles of will should b avoided; you run the risk of losing. And especially in this, you cannot let her win. The battle lines have now been drawn and any sign of even partial victory for her will entrench bad behaviour patterns even further. But this is where it is now; if you remove her, it would need to be somewhere that CAN win. And it is very difficult to guarantee this ahead of time with a place you don't know, and that has no experience of her.

    I would at least ask this doctor if his opinion of her strength of will, and his belief that he is stronger, still stands. Also ask if perhaps there could be a more productive strategy... because now could be a good time to try something with a greater chance of actually working.

  13. GoingNorth

    GoingNorth Crazy Cat Lady

    Something else to be aware of: Seroquel and other drugs in its class can have difficulty swallowing as a very rare side effect. I had to go off those medications as a result and switch to Haldol.

    Haldol can be given by injection if needed. A lot of docs aren't aware of this side effect of Seroquel because it is so rare.
  14. Jena

    Jena New Member

    north you are exactly correct. did you read what i wrote about the medical junk associated with-refeeding as well and the side effect of that is also the same. their focusing 2 much on her bipolar and not enough on refeeding. without food she'll die. it's been 7 weeks now.

    they have until tuesday if by than she doesnt' eat than hopefully the place i'm checking out that's more local will be what we need and i'm transferring her there. i dont' need some doctor playing head games with-an eleven year old child. the nurse worked with her alot tonight very sweet old woman. difficult child's legs weren't ok tonight maybe all the medication but she couldnt' stand up ok. she was trying to soothe difficult child. here is hoping. it isnt' about winning this doctor's a moron it's about easing the anxiety which will not be achieved with the dosage of seroquel he has her on
  15. GoingNorth

    GoingNorth Crazy Cat Lady

    Well, she's on a low doseage of Seroquel, but if you do some googlling on APs and swallowing difficulties...you should find the data there. I had a feeding phobia from 17 until about 25. Ilived mostly on carnation and ensure. My phobia was about solids and was triggered by an incident in which I nearly choked to death on a peice of cheese. I was very lucky that my husband to be was there and knew the Heimlich maneuver.

    Even with the feeding shakes, I still lost a lot of weight. I still remember that time. In fact, when I described my current problem to my psychiatrist and attributed it to my anxiety having gotten really bad, he told me it was from the medication.

    I was lucky in that once I came off the seroquel, not only was I able to start eating normally, but a lot of other UGLY CNS side effects, like my knees buckling and the like also quit.

    I'm on a low dose of Haldol and take benzatropine for the Haldol tremor. So far no signs of tardive dyskenesia, which is good as I will NEVER take another atypical modern antipsychotic. I simply cannot tolerate the side effects of the medications.

    Now, I was on a much higher dose of Seroquel than your daughter is on, but it mightn't hurt to take that into consideration especially as the feeding issues seem to have gotten worse since she was placed on the medication
  16. Jena

    Jena New Member

    shes' been on seroquel before. my main issue is that right now the medications are getting changed with-o my knowledge or consent which i was just told by the hospital is illegal. she also is still status quo no food in her. and wait gets better their in there trying to do school work with-a kid who has no nutrition in her. so stupid. and they had to hold her down this morning to give her a shot.