absolute nitemare

[Jena]

had mtg. today they discharged difficult child. said they can't fix her. she needs to be in a facility with more therapy available. a long long story that isnt' worth even sharing to be honest.

i asked to see difficult child. i went in the room it was by far the saddest thing i've ever seen. she was heavily sedated. they put her on lithium, haldol, seroquel, ativan and some other medication i've never heard of all without my approval. guards were coming in with nurses to administor medications to her and when she wouldnt' swallow they gave her a shot with a huge guard standing over in an eating disorder unit?

she was completely flat, didnt even recognize me. wasnt' even that responsive, in her pajamas in the middle of afternoon laying on a slightly peed plastic sheet under her. she trembled and said is this real is it you mom are you really here? it took her at least five minutes to realize it was me and i was really there.

it was horrifying. her lips were cracked and dry she was laying in bed holding a picture of me and her crying with the blankets over her and the door closed. state she has been in now for days upon days.

she was on bedrest because she fainted unbeknownst me. she lost 8 pounds while there so her weight is now at a critical point. no urinalysis or iv done after fainting. illegal with all the medications.

i almost hit the dr. i told the entire staff off. i loaded truck 3 hours worth of toys, clothes, etc. with my mom sitting with-her while i did it. al she did was lay in the bed the entire time. she was totally out of it. she had a fever also of 100.

difficult child is home now. she slept most of way home. i did give her the seroquel tonight very low dose. i called all her outside treatment providers. put them on alert and bringing her to peds in the a.m.

all i can say is she is traumatized i think by the experience. she cried once home in bed. i read to her and she said i'm afriad i'll wake up in the hospital again. i'm afraid i'll die overnight because im so thin.

before bed i bought her a vanilla shake she drank 3/4 of it, 2 glasses of o.j. and chicken broth an entire bowl.

all i can say is my mom gut was screaming at me the entire time. ididnt' listen that will never ever happen again.

she is sleeping now. i swear to you guys i wanted to sleep with her yet had to remind myself to begin healthy habits and normalcy again. yet i've checked on her at least 5 times tonight.

words cannot begin to describe.

 

[Jena]

this also was supposedly one of the best hospitals in our country. what i'll do to them i'll decide after i handle difficult child, eating god willing and hoping she is healthy and getting all levels checked tmrw with-blood test from lithium to urine tests all of it.

those ppl should be all cut up. yup i said it cut up

 

[smallworld]

Jen, I'm so very sorry. It is now obvious that this eating disorders center had no idea how to treat a child with a choking phobia. I know it's easier said than done, but put your energy into getting C well and forget about dealing with the doctors in New Jersey. Your little girl needs you now more than ever.

If need be, push your pediatrician to admit C to a medical floor so she can be stabilized medically. She sounds very ill right now. At least on a medical floor you would be able to stay with her 24/7. That's what I did with M. C could still have a psychiatric consult while on a medical floor, and psychiatric medications could still be administered. It's just a different approach if you don't want to go all the way to Oregon.

Hang in there, Jen. I'm sending positive healing thoughts to C and mega hugs to you.

 

[JJJ]

I'm 100% with Smallworld on this one -- a medication floor admit would give both of you the comfort of being together (with some breaks for you from grandma) yet have her under the watchful eye of a doctor and the ability to be fed via IV. She needs to gain weight immediately (as you know). Please tell her I'm very proud of her for drinking the shake AND oj AND soup tonight!!!

 

[Josie]

I am sorry she and you had to go through this.

 

[Jena]

i am never ever putting her in another hospital again unless i am forced to or it's a break. after what is saw these ppl do to her with-o consenting me. the rage i feel i can't begin to even tell you. i got 4 hours last night because i kept invisioning bad things.

 

[Jena]

ok i'm sorry that was my sheer anger talking. it will take her days to get over what they did to her. when i bring her to peds if he suggests admitting just to get fluids etc. and i can be there every second than i will. husband and i decided to try to work it from home unless my pediatrician tells me otherwise. i totally completely trust in him. he is the one dr i trust in without hesitation. he's been there for her every step of the way for years.

i couldn't figure out why i was a wreck at home, my gut was literally aching husband was like wha'Tourette's Syndrome wrong what are you feeling your a wreck shes' getting help. i siad something isn't right i can feel it. that's when i went up and during meeting said i'm seeing her today bottomline.

i spoke to oregon their ready to take her if need be. yet here is the clincher in all of this that ive noticed and the therapist with whom we cant' totally blame she wasn't on the forefront of her medications isolation etc yet totally to blame.

difficult child is very symptomatic always she craves negative attention always has. now i strongly believe that besides a true phobia i am also dealing with-a child with whom is enjoying part of being sick prior to hospital not during and seemingly now at home. so i have so much on my hands. be there for her use the maudsley approach yet at the same time back off just enough so that she wants to get well. it's so hard all of this and im so angry still. i try myself not to be yet i cna't help it.

it'll take days to get all the medications out of her. i dont' know how long i dont' know these medications at all and their afterlife.

 

[hearts and roses]

Awww Jen, big mommy hugs to your hurting and angry heart. I agree that the main focus is on getting difficult child to a healthy weight and stable. At the same time, it is extremely important that you don't do that thing where as a parent we feel sorry for them or take on guilt about the way in which things went down...or worse, how somehow the condition they end up in is our fault. It isn't. Despite difficult child's choking phobia, she knew and KNOWS the consequences of not eating. I would harness that truth and use it to your advantage once she is more stablilized. Not as an "I told you so", but find a way to get through to her - "difficult child, you don't want to end up there again, do you?" "Let's brainstorm ways in which we can help you get past this so you don't end up in the hospital heavily sedated again" "We really need YOU to work with your doctors or you may become critical again and need to be hospitalized".

I'm not saying that your daughter is making up her phobia/eating disorder, but she sounds eerily like my daughter - addicted to the drama and the negative attention it gives her. After my difficult child did some pretty lame 'suicide-like' things to herself, it became apparent to both my H and I that she wasn't really psychotic, she didn't really want to commit suicide - she had merely found another way to snag us and bring us into her warped way of getting attention. It worked - for a while. After the third lame attempt that ended with her in the hospital and me losing time from work yet again, lost hours of sleep, etc., she came home again and started in with her bad self pitying attitude, blaming everything on everyone else and complaining of anxiety (which we acknowledge was an issue, however, not to the extent that she claimed). We watched her, but we didn't hover. She was allowed limited activities. When she bucked against one of the rules of our home, in a fit, she screamed at us, "Oh great - you don't care about me. Maybe I should try to kill myself again" and instead of feeling desperation at the thought, I instead took it for what it was: She was threatening us. If she didn't like something we said or did or imposed upon her, she reacted with the threat of killing herself or hurting herself to manipulate us into giving in. Well, without any discussion, both H and I said, almost simultaneously, "Honey, we love you and we can't stop you from doing what you feel you need to do. It would be unfortunate for you to harm yourself, but you know what? You cannot control us by your actions. You know the difference between right and wrong and you're old enough to behave the way you should" and then we let go. She didn't harm herself. She sulked, stormed out and got over herself. She never EVER once attempted to hurt herself again or commit suicide. We called her bluff at a very crucial point in her so-called recovery. She was yanking our chains and it was working until we stopped yanking back. Last year, I posted about her weight - she was losing weight at an alarming rate and even our Dr was concerned and made difficult child go in for weekly weigh-ins. I finally intervened and asked the Dr to stop that because it was just feeding into difficult child's addictive behaviors. Once the Dr stopped making a big deal about it, as well as us, suddenly difficult child began to gain back some of her normal weight and began eating again. No more dizzy spells and fainting or headaches. Hmmm, interesting.

Again, I'm not saying that your daughter is pulling the same business, but if she has historically used negative behaviors to gather attention, then I think there is a strong possibility that she will use this to control you further. It is very important that she owns this behavior and the consequences.

Are you seeing a therapist to help support you and guide you through any of this or are you just relying on support from family, friends and difficult child's pediatrician? Jen, hugs. This is very horrible and scary I know. Let the hospital stuff go for now - but document everything so if you need to pursue anything legal with them, all your ducks are already in a row. Best of luck and sending positive healing thoughts for difficult child.

 

[DammitJanet]

Im sorry this went down this way. I still think she is a very sick little girl. I dont know that getting her off all her medications is the answer. As SW suggested, I think you should carefully consider getting her on the medication floor so she can be monitored with you allowed to be present but where they can also keep her going on the psychiatric medications. She obviously needs something.

 

[Bunny]

I'm sorry to hear that things were so bad at the hospital when you went there. I think that you did the right thing by taking her home. I don't see how having her sedated to the point that she was was going to help her to get over her phobia and fear. I'm sorry, but it must have been terrifying for her to have nurses accompanied to her room by security when they came to give her her medications. Unreal. She's a child for heaven's sake!!

See what the pediatrician says when you take her there today. It's great that she drank a shake, oj, and some soup yesterday. I hope that she drinks something today and maybe this will be the beginning of some recovery for her and for you.

Pam

 

[BusynMember]

I'm really sorry (and horrified) at what they did to her. Unfortunately, they d use strong-arm tactics like that in many psychiatric hospitals. I agree with getting her on a medical unit.
Liking the attention is part of an eating disorder...not separate, at least from what I've read on that (my sister was anorexic). She can't want to be so sick that she is in serious peril. I would continue to focus on stabilizing her then getting her to eat and worry about everything else later On. Hugs to all of you.

 

[Josie]

I agree with getting her some place where they can stabilize her medically.

I've experienced Obsessive Compulsive Disorder (OCD) causing fear in a child and I am not sure you can get them to just get over it without appropriate help, no matter how hard you or they try. In your daughter's case, it is a life threatening situation.

 

[Fran]

Just a footnote, some of those medications take a week or so for difficult child to adjust to. My difficult child was drowsy with some of those medications but it wore off quickly.
Not that medications are the biggest priority. She sounds medically very ill and I hope the pediatrician. is proactive. I'm glad there is someone you trust. It has
been a nightmare. I'm wondering why pediatrician wasn't following difficult child in the hospital. If he/she called and checked on her, there would have been
earlier intervention, I would think.
Sigh, what a sad situation.

 

[hearts and roses]

~Deleted~

Sorry Jen, I don't want to highjack your thread debating a sensitive topic such as this. Please forgive me. ♥

 

[DaisyFace]

Jena--

I've been following this story and just don't even know what to say...

I'm so sorry it has gone like this. Wish I had some good advice -

 

[smallworld]

Jen, at this point an IV may not be enough. She may need a feeding tube. See what your pediatrician says and be open to the possibility of an admit to a medical floor.

Hugs. I'm thinking of you and C.

 

[DDD]

Sending caring thoughts of support your way. DDD

 

[Jena]

hi

thanks guys as always.

brought her to peds he said there is nothing he can do she isn't in good shape and has lost alot of weight again. he is calling the local children's hospital to get an appointment to have a full thing done on her electrolyte levels, blood, protein levels, ekgs' etc. amazingly enough her spirits are really pretty good. she's alot more alert today. yesterday she was a zombie.

peds got upset when he saw her and said i'm calling hospital to tell them off and lodging a complaint also. so he said if we get her in the next day or so i'm good with that yet if i can't than we'll have to go thru e.r.

he isnt' sure if refeeding at home is good at this point. that will be left to the results from testing and him overseeing ALL of it. he said a feeding tube may have to be used just to fill her up now. also when you refeed after so long with-o food you run into medical issues refeeding syndrome, some other junk i researcched and he said to me today. i said ha i knew that. i researched it.

husband is out getting pediasure, pedialyte ice pops gatorade is being his usual helpful self. i apologized for cutting him out and being rough on him.

what can i say, nothing really at this point. her lips are cracked and bleeding somewhat, she's amazingly skinny. down to 97 now. she is 5'4". i had her stable at 105 upon admit at least with weight. now she's entering crisis mode with-weight. stupid stupid hospital.

 

[Jena]

peds also knows of a possible day hospital he's looking into. this guy let me just tell you is my lite in the tunnel sort of thing. no drama but hes the best dr i've ever met.

 

[smallworld]

I'm glad you have someone on your side. Your pediatrician sounds like mine -- a keeper!