hard day for difficult child and me.

[Jena]

hi

so today was a complete 4th day at hospital for difficult child. this morning was a 9:30 group with-all the kids and parents that i was looking forward to, support groups etc.

i couldnt' see difficult child because she didnt' eat her breakfast. she began at 8 a.m. and did not eat it until 12:30. 4 1/2 hours.

i got to see her for ten minutes before she was than being dragged into lunch. i hugged her, gave my support and love. and left

I return at 2 for 2 to 5 visiting hours. i couldn't see difficult child because she couldnt' complete her lunch. she began at 12:30 and she didn't get out until 3:30. I got an hour with her and we played a board game until nurse came in and said difficult child snack time! left again.

i return at 4 thinking she'd be done. she wasnt' complete. had to wait. she came out, stomach in pain and growling and said it hurts. i said go to desk and tell nurse. she does and they say we can't give you pepto bismol without clearing with dr. difficult child returns confused. i get ten minutes with difficult child and have to leave again because now dinner is going to be starting. 1 hour for completion of a fruit ice for snack.

i return at 7 for visiting hours. catn' wait to see her. bought her books, was going to read black beauty to her. we had a plan. i cant' see difficult child she is still in dining room she didn't finish her food. dinner began at 5:15. i left her a note on her bed. and left again.

it is now 9:40 she is still in the dining room, crying with nurse to eat her food.

so, all day long out of 17 hours awake 16 of them were spent trying to eat food. no visiting really, no breaks, no nothing.

staff says i know it's hard, it hurts, i broke down today twice and had to remove myself while waiting in her rm for her. but it'll work. we're trying to break her, that's what we are doing.

all she looked forward to all week was today, getting to see me alot. she didnt' get it. using me as bait didnt' fully work. she ate some of her food, yet that wasnt' good enough for them. they put her on extended meals. they alott 5 hours to see if shell eat the food. meanwhile telling her if you do not eat you will not see mom.

i peered into room and saw her begging nurse to see me, crying and trying so hard to swallow the rest of her food.

she must meet 1,200 calories a day according to them. i left the hospital each time completely numb. i'm just numb at this point. i'm sure the tears will come yet they havent' yet.

thoughts??

 

[Jena]

they just released her from the torture room. she did not complete her dinner. than she was told to go to bed. she is now in her room crying.

 

[BusynMember]

Well, I don't like it at all. That isnt' going to make her eat. But, if this was my child, I'd want her to start getting nourishment in her. Seriously, I'd be considering feeding her through a tube if she is afraid to eat. I would probably take my child to a regular medical hospital, one with a psychiatrist on staff, and at least get her healthy while dealing with the food phobia. But I don't like the way this hospital is doing it and I'd be very upset. How do they think this will help?

(((Hugs)))

 

[Jena]

hey

just had a whole other issue there. gotta post that one as well. oh man. her doctor is head pyschiatrist at princeton hospital. they seem to think this radical approach will work. the other parents at the support group are telling me to hold on and give it a chance. i'm trying so hard. i'm supporting difficult child, crying in private and keeping it together for her. she did complete one whole meal today. lunch. she ate an entire grill cheese sandwich and an apple.

i think my concern is more long term. will this bring back her love of food and cure this hard phobia? will she relapse? those are my concerns as well as her hurting right now. i told her tmrw a.m. to call me and we'll do our meditation on the phone and our imagery and visualization prior to her breakfast so she can get it down. than i told her to call me to do the same with-lunch. she is very anxiety ridden that she will not see everyone tmrw that is coming. me and her grandparents on both sides. she isn't getting the therapy there so i gotta give it to her on the phone.

handling all the issues monday with-the head pyschdoc and treating therapist of which difficult child had a big 5 min session with in 4 days. than i'll decide if i'm pulling or not. they will also be reviewing insurance at that point on teh appeal. alot of junk as always.

 

[Andy]

So incredibly hard seeing your child begging for you and not being able to go to her! You are being so strong!!! Even in your tears you are being strong!!! My number one rule is that no matter what, you do not keep me from my child - it is a very strong rule and it took me as far as remaining Sunday School Superintendent so I would have keys to the educational wing at church (school wing). I never overstepped the boundaries of going into the locked building without the proper procedures of checking in but that key helped me a lot to know a locked door would not stand between us. Then difficult child's psychiatric hospital stay and no key - for two weeks!!! Your current situation is so much harder than what difficult child and I went through and I could just barely handle that one.

 

[svengandhi]

If the other parents are telling you to stick with it and things will get better, I would listen to them. Your daughter has ODD - she may just be pushing the envelope to see how little she REALLY has to do to get what she wants. If she eats one bite and then starts fussing and they let her spend hours with you, what has she learned but to manipulate even more people? If the doctors think she is getting enough nourishment right now not to need forced IV feeding, accept what they are saying and go with it.

It's hard but she has to learn to deal with issues. I am NOT talking about situations like your other post, that was bullying and you were right to confront the nurse and even more right not to do it in front of your daughter, but she has to learn coping skills. If this is the program and it's working for these other girls, let it have a chance. We all know that our kids with ODD can outstubborn anybody, even if the only one they are hurting is themselves. My son did the same thing, although not in the same situation.

Your difficult child wants to come home because she is in control there. You stay up all night to lie in bed with her, you coax and cajole her to eat and run your whole family's life around her. I am NOT criticizing you, it's our instinct as parents to do that and I can't say I wouldn't do the same because I just don't know what I would do. I do know that everyone else in my house suffered while I would spend hours begging difficult child to do his HW or whatever.

My good thoughts (I'm not a prayerful person) are with you and your family, especially your little girl who's the same age as my little boy.

 

[LittleDudesMom]

but it'll work. we're trying to break her, that's what we are doing.

Jen,

I think this is where the problem lies, in my unexperienced, unprofessional opinion. The point of this hospitalization should not be to break your daughter, but to help your daughter understand that her anxiety creates her fear of choking and then move on from there. Having your daughter sit until she finishes is punishment/torture just like my dad used to do with my brother - made his sit at the table for hours because he wouldn't eat his green beans. What are they teaching your daughter by making her sit there until she is finished? That they are in control? How will that make her get better?

Sharon

 

[Jena]

sven you must of not gotten my post at all. she is not odd. she is BiPolar (BP), g.a.d. and o.c.d. and now throw in eating disorder. i also did not tell the nurse off infront of difficult child i would never do that. i did it outside the wing.

sharon yup i totally got you. that is why i'm heading up tmrw to a mtg. i do not get their approach. maybe to them it's working maybe to them 5 hours of the kid sitting with-food and than finally ingesting partial is good. yet for me that is not cool. i'm struggling bigtime with this place as you can see with all my posts. yet there are zero options out there for me right now. i am scared to take a non eating kid home.

 

[Bluemoon]

I don't get their approach at all either. The only possible explaination I can come up with is not the one they state.
With a phobia, a regular phobia anyway, the treatment is to be forced to confront it, to face (or do) the thing that causes the irrational fear and become more comfortable and unafraid of it.
I can see where that could work with food phobia to a point, but I don't see where punishment fits into the plan. I would also think they would start out with easy to swallow foods like soups and other less solid things. However, those are just my thoughts and I really don't know squat about food phobia....but I am thinking the Obsessive Compulsive Disorder (OCD) makes it alot worse and harder to overcome. In fact, couldn't it be the cause?

 

[Jena]

yes it is Obsessive Compulsive Disorder (OCD) related. a unrealistic fear which is the basis and foundation of Obsessive Compulsive Disorder (OCD). as one parent said to me our kids have the unrealistic distortion when they look in the mirror and see themselves fat, yours does when she thinks something's logdged in her throat so there is some common ground. we'll see. i'm just taking it day by day right now

 

[TiredSoul]

Is she taking anything to treat her anxiety?

 

[susiestar]

Jen, I can see how this might work with some kids, esp with those who develop anorexia as a way of gaining some control over their lives, but I doubt it will work long term.

Do I understand that she is seeing a therapist for five minutes in four days? What is up with that? She has a HUGE need of therapy to handle this, as does every patient with an eating disorder. What is the usual therapy schedule for patients on this program? Is this some new experimental program? Can they show you statistics of patients who were helped long term with this approach? in my opinion breaking a child is not a goal. Breaking a cycle is a good thing, but breaking a child's spirit is a bad thing.

These people sure don't seem to have much understanding of kids. NONE, not a single one, of the programs Wiz has been in, would use tactics like this. I was leery of leaving him in a locked psychiatric ward the first time, but they were great with him. When he was upset because I wasn't there, they let him call me. Of course being able to call me meant he didn't have much to say, but that is Wiz. They did make him do some things over and over until he did them up to standards, like shower, but otherwise he would just get wet, or just wash whatever part they checked. While they supervised him during "hygiene school" they had 2 men, one who could be seen by a nurse in the hall, and one who could see Wiz and was seen by the other man so that nothing bad happened, and Wiz had swim trunks on during the entire process. The man who was actually talking Wiz through it all was not an orderly (who had little or no training) but was a therapist with all of his degree but his final project done for his doctorate.

There is a whole lot that is not going right with this program. Not letting her have pepto bismal with-o doctor orders is a function of being in a hospital. NO nurse in any hospital can give any medication, rx or OTC, with-o doctor's orders. Many times a doctor will leave orders for some basic things in a chart, but not always. Why couldn't the nurse call the doctor? There MUST be a doctor on call, so next time you (not difficult child) need to contact the nurse and INSIST that they call or page the doctor on call. Don't let them tell you there isn't a doctor - there is ALWAYS a doctor that they can page or call. It may take some time to hear back fromt he docs, but it can be done. Be polite but insistent, the way you were with the night nurse you read out. Cause you were awesome with her.

What are they doing about her anxiety? Do they understand that this is a phobia and not standard anorexia nervosa? Or bulimia? It is caused by extreme fear of choking. I think that if things do not change a TON when you speak to the doctor on Monday that you should take her home and put her in a reg hospital where they will treat her anxiety disorders as they are the root of this. This all sounds like it is not going to be effective in the long run.

I DO think your daughter is capable of the manipulation that svenghandi suggested, of figuring out that she only has to do X to get B, then trying to get B while doing less than X. I just don't think the "sit there until you eat it" is going to work long term. It isn't going to help her see that she is not going to choke, that her throat is designed to let food down to her stomach.

Sending you a PM also.

Hugs!

 

[JJJ]

Wow, this just feels wrong to me. Therapy for Obsessive Compulsive Disorder (OCD)/anxiety should be CBT and exposure not forced feedings. I'm worried they are making it worse.

 

[susiestar]

Jena, what are your instincts telling you about this place and how they are handling your daughter's treatment? If your instincts are screaming it is wrong, then you need to act on that - regardless of what the other parents are saying.

 

[svengandhi]

Jena -

I am sorry if I didn't state myself clearly. I was saying that I thought the way you handled the nurse was great. I know that you didn't confront her in front of your daughter but you did state your case and put them on notice that an attitude like hers was not going to be tolerated.

As for the ODD issues, I apologize because I thought that you had mentioned somewhere in the past that she has ODD issues. I still think that ODD or not, she is trying to manipulate the situation (and even typical teen's do this - it's the age, the puberty and in her case, the anxiety of being away from her comfort zone that may be propelling it rather than ODD). Her manipulations may not even be on a conscious level.

This might not be the right program for her or it could just be taking time for it to work. I am not sure if taking her out after less than a week would be productive for her, you or the rest of the family but, of course, I am not in your shoes and am not seeing the totality of what is going on at the facility.

As for the anxiety and the Obsessive Compulsive Disorder (OCD), have they revisited the issue of medications to tide her over until the program kicks in? If she's so ridden with anxiety that she'd rather sit for 5 hours than eat a meal, it could be that she is just not capable of it and she needs a medication to calm her down and let her eat.

I do feel for you and really hope that your daughter is doing better today.

 

[Jena]

hi

i'll try to answer all the questions in one shot. yes she's on seroquel right now 25mg to address all her stuff and lower anxiety. she isn't really manipulating, today she did. yet past four days she is just afraid to eat. today she ate nothing. the day nurses felt badly, they kept caling the dr. telling him she wont' eat today. even though she knew we were all waiting she just coulnd't do it. so they substitued everything today. she had ensure and alot of milk and a fruit ice.

what is my gut telling me? well my gut isnt' saying a whole lot. i have had not alot of calm time. my days are usually filled with visiting or waiting to visit, calling doctor's etc. or being sick this week. i thikn i'm happy she is somewhere and professionals are handling her not eating, because i began getting very edgy at home dealing with it. i think im glad that they have the medical piece of checking her vitals, her urine, etc. for dehyrdation. yet there are def. problems with miscommunication there between staff, there are evidentally visible problems with-their approach since difficult child was only able to complete 1 meal since there and it's 5 days.

so from what we are hearing she will be re evaluated tmrw and i am hoping and praying we get our mtg with the head ppl to discuss ok whats the plan now?? i am seeing a common ground though with-other parents i am mtg. with their bullimic kids and aneroxic kids and one kid with a choking phobia like difficult child. their all non logical fears, thoughts and visions that are in their minds. the same way a mom cant' say to her kid ok throw up just once today to feel better i cant' say to difficult child ok we'll give you ice cream today because of your throat?? see my thought process here??

 

[smallworld]

My daughter had a similar choking phobia at age 8. It was not solved by having her sit at a table for 5 hours looking at a plate of food. That, I am sure, would have made the situation far worse. My daughter's choking phobia was solved by reducing her anxiety with medications (in her case, Zyprexa, which has been proven in a few small clinical studies to be helpful with eating disorders) and then gradually and patiently working with her to reintroduce food, starting with soft foods and then working up to harder foods.

The anxiety was absolutely real. It had nothing to do with ODD or manipulation. I believe it's real with Jen's daughter as well. To treat her daughter in the manner that this hospital is, I have to believe, is cruel and harmful. I completely believe Ross Greene when he says: "Children do well when they can."

Jen, someone in Maryland is thinking about you and C tonight. Hugs. I hope you are able to straighten everything out in the morning.

 

[smallworld]

One more thing: 25 mg Seroquel isn't really high enough to hit the kind of anxiety your daughter is experiencing. It's got to go much higher to make any difference.

 

[Jena]

no small that's where your wrong, 25mg. for the first week will give her enough calming to pull her thru. than we go up to 50mg. if you start her at 25 and not 15 the hit is fast. and from being around there for so many days i've come to learn this......

their approach is food is life, without food there is no life. their main goal is refeeding, not therapy. their thought process is as with any phobia is exposure. hence difficult child sitting at table with-food infront of her like that. she is forced to confront her own fears that are in reality "non logical". the child does not have anything logded in her throat, she is not "sick" in her throat. I am noticing as the days pass right now that her belief that something is in there is dissapating somewhat.

i ask her do you understand now that there's nothing stuck in your throat when you are able to eat? she puts her head down and says a huh i get it's my anxiety. than after ea. time she is able to ingest food and she did complete one meal in 4 days, today being full 5th day i rewarded her, i praised her i jumped up and down basically lol she was beaming at me when i did. a few of the kinder nurses there have pulled me aside quietly and said to me i'm a mom if my kid was giong thru this yea i'd be freaking too, yet please trust in what i'm going to tell you it's radical but if you can just make it thru the first week with-her it will turn around and they do re evaluate and they will change their approach somewhat.

so, i'm trying very hard right now as i said to last till today, see what they have to say to me regarding their approach it's success in 5 days, etc. also find out when this therapy will kick in.

i'm going to be very honest with-all of you at this point so far the only other option we have is oregon so far. i am still searching for my back up right now and klmno was right we have been clued in by our advocate on the insurance side if we pull her the fight will be harder at next hospital and to give it at least a week. than we can say ok it didnt' work next hospital.

yea it bites, yea it's hardest thing 'ive ever had to do is sit there and watch her cry and be infront of food for 5 hours. yet truth is without food she will die. she needs to confront this fear and battle it.

 

[Josie]

My experience is with Obsessive Compulsive Disorder (OCD) but not food phobia. For Obsessive Compulsive Disorder (OCD), the recognized most effective therapy is much like Smallworld said. Starting with small steps, feeling the anxiety but doing it anyway, and working up. Taking too big of a step is overwhelming. Sometimes, medicine is needed to make the anxiety manageable. For Obsessive Compulsive Disorder (OCD), sitting there not eating for hours "feeds" the Obsessive Compulsive Disorder (OCD) and makes it stronger because she is giving in to her fear and not eating. An exposure would be if she ate something while feeling that anxiety. Then she would see that her anxiety went down eventually even if she ate. Now, if the anxiety is going down, she thinks it is because she didn't eat.

For Obsessive Compulsive Disorder (OCD) therapy, my daughter's therapist would have us acknowledge that maybe she would choke (because we can't guarantee that she won't, really, although we know the odds are very very small). Reassuring them that it won't happen feeds the Obsessive Compulsive Disorder (OCD). I had to tell my daughter a doll might come alive! I really didn't agree with this at the time, but I see why it makes sense now. Some of their fears actually could happen.

My daughter knew the doll wouldn't come alive, but those thoughts kept coming. It couldn't be reasoned away.

I realize they are not calling this Obsessive Compulsive Disorder (OCD), but a phobia, but it does seem similar.