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eternalhope

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Reply with quote  #1 
12-year-old d was doing well and coompleting meals after 8 weeks from being discharged from Residential and PHP programs. Weight restored and doing FBT successfully from home, up until this past week. Relapsing hard. Started with refusing breakfast last Friday, made most of it up later in the day. Then went on hunger strike Sunday, and finally ate at 6:30pm. Then hunger strike yesterday, only ate at 7:30 when we were about to call an ambulance. Now refusing to eat. No school for 2 days and bizarrre ocd behaviors. We are extremely worried. We have taken away electronics. No park or zoo until she is compliant. No school if she doesn’t eat. Looking at local iop and PHP programs. Been in contact with therapist on and off yesterday and have an appointment today. Asked for psychiatrist referral. Looking at crisis intervention as she refuses to go to bed at a reasonable time. She spent 12 hours in our small bathroom yesterday. Doesn’t seem to care. Just tells me to go away. She is weight restored and in no immediate medical danger so I don’t know if she would be admitted for ED intervention, but ed is at the bottom of it.
scaredmom

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Reply with quote  #2 
eternalhope, 
I am so sorry to hear this. I am glad you are seeing the T today and hope it goes well. I agree ED is the issue here. You  are doing the right thing by engaging your team. I am not sure what else I would do on top of what you have done already. My thoughts and prayers are with you and your D. I hope this is a short relapse and you get back on track ASAP.
XOXO
eternalhope

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Reply with quote  #3 
Thank you scared mom. I know our current situation isn’t as bad as others whose children are medically compromised, and I thank God for that. But I feel the train coming. We are very off track from where we were, and my d is so difficult.
bewell

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Reply with quote  #4 
Dear eternalhope, I am sorry about what's going on. I don't have a lot of advise, but I remember reading one of the ATDT member post from few years ago. Her daughter was weight-restored and doing good for some time, but then suddenly started refusing food just like your daughter. I think she took her to the hospital after so many hours of no food. She spent 3 days in the hospital, they got her back to eating food and discharged her home. And that was it. She went home and that was the end of her relapse. So, I am hoping that this is just a very small bump in the road. How did you guys get her to eat before? Did you do LSUYE?
Kali

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Reply with quote  #5 
Dear Eternalhope,

I'm sorry she is having difficulty eating again. Does she have any "safe foods?" meaning foods that she finds easier to eat than some others...in our case it was cheerios, for example....if so can you try to start her eating again by trying some of those? Usually, they are the last remaining foods which are have not been restricted out of the diet of someone with AN when they cut out foods one after the other. She was doing well when she left ERC, right? Hoping that this is just a blip. Just keep serving her meals and trying to help her eat.

How did the appointment go today and what did the therapist say?

The time right around weight restoration and afterwards is very difficult so you may need to hold on to your hat and just keep going. You have done an amazing job so far getting your daughter into treatment and weight restored.

Kali



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eternalhope

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Reply with quote  #6 
Thank you Kali and Bewell. Our situation has gotten out of control. To answer a few questions.. we are doing magic plate, and when she eats, she completes. No fear foods, other than if she can see white fat in meat or salmon, she’ll pick it out. She ate pizza and spaghetti for dinner past 2 nights and grilled sandwiches for lunch plus big cookies for desert. She did very well at ERC, and we left in a good place. They said she did not meet clinical criteria for OCD, based on their observations at the time, and a survey she filled out, I understand why they were hesitant to give a diagnosis, although my husband and I were confident she had it based on rituals revolving around her wake up pattern. The ocd has gotten much worse and the rituals have changed. She spends hours in the bathroom and she is drinking less fluids. She admitted to laying on the floor in the bathroom and pushing her stomach down. She had admitted to bad body image problems. She is always going to the bathroom, we believe in an attempt to have the sensation of her stomach being flatter. This bathroom ritual has been going on for over a week and keeps her up until 11:30, and last night the latest yet at 1:15am. It is interfering with school as she cannot get up in the morning and starts the breakfast refusals. Yesterday she didn’t get up until 11, and it was at 4:15pm, she finally ate. We have hid all electronics and the remotes for the tv so she has no entertainment during the day. We have not taken her to the park in 3 days, and have said she has to be compliant with all 3 meals and snacks to go to the zoo on Sunday. When I try to wake her up she refuses, shoos me away. Last night as I checked on her, and tried to coach her to bed, I gave her a consequence of no, and she said there was no point. Then she threatens to not go to bed at all so I have to back off. So ed is at the root of it, but the ocd mixed with the oppositional defiance disorder makes it very difficult as we are encouraged to drop the rope. But this night pattern is affecting meals and school, which is new. Last night she actually said she was going to bed at 10:45 after the therapist appt, and she ate (starting at 4:15) lunch, snack, dinner and snack (ended at 10:30), but then the ocd came back and kept her up
Until 1:15a. I’m at a loss. I have an assessment for ERC in my area for iop or php, but if she’s not up in the morning, I don’t know.. I’ll texted the therapist to see if we can touch base, and she has an appt with the dietitian who is wonderful today at 3:30. I think she eat by then so she doesn’t have to admit not eating to the dietitian but I not confident she’ll get in 3 meals and 3 snacks.
EC_Mom

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Reply with quote  #7 
Eternalhope, I see from your post that she did, eventually, eat the food. I count all that as a setback, not a relapse. 

One thing I would consider is making the approach less punitive for not eating and more rewarding for eating. Like instead of hiding electronics, you could have them out and ready to go, and remind her that once she starts eating she can start using her phone or watch tv. Instead of holding out "zoo on Sunday", which is really far away, sit with her and the food and click around on the zoo website, showing her with enthusiasm all that is going to be going on that she will want to see. Feed her in the bathroom if that's where she is. Spoon feed if necessary. It's not her fault. Don't punish--use short-term leverage to get the first spoonful in and then keep going.
eternalhope

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Reply with quote  #8 
Thank you EC mom, we have tried to make these items rewards. The problem is, for example, she asked me if she could look up “one thing” on an iPhone, and being flexible, I said yes. As the iPhone had WiFi, she ended up in the bathroom for 12 hours (Thursday) completely entertained and not attending school and not eating or drinking. It was only under threat of calling an ambulance that she ate at 7:30 that night. She is still in bed now, refusing to get up. I’ve suggested that we can go for a walk after she eats breakfast and snack. When she’s compliant we can go to the park tonight and the zoo tomorrow. I’m really at a loss. We are worried she’s giving up. We’ve been tip toeing around talking to her, waiting for guidance from the therapist but we’re at a point where this pattern is interfering with a normal life, not eating and not going to school. So this morning even through she has the covers over her head and is refusing to get out of bed, I had frank conversation with her. She had her hands over her ears so I don’t know how much got through. But I said this wasn’t the life for her missing school and being in the bathroom all the time. I told her she needed to use her dbt skills to help her with this ritual. That if we couldn’t break this new pattern, we would have to seek additional help.
But that we could not go on with her staying up so late, not getting up and missing meals and school. Oh and I failed to mention, she took my phone from me Friday, and refused to give it back. As I was waiting to her back from the therapist and ERC, I need my phone, and I was sick of allowing ed and bad behavior to rule our lives, so I fought with her trying to get it back, maybe the wrong thing to do,
But I needed my phone. She bit the hell out of my arm. Huge 2 inch black and blue bruise. I screamed said I couldn’t believe she did this. She gave me the phone back. It really sucks.
tina72

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Reply with quote  #9 
Hi eternalhope,
so sorry that it is so difficult at the moment but maybe this is an extinction burst.
Two things: you said she is not drinking enough. That can be very dangerous in short time and I would require her to drink at least 1,5-2 l a day or take her to ER. Refusing to drink is dangerous.
I don´t understand the iphone/bathroom thing. Was she locked up there or why couldn´t you get it back after a few minuits?
If she lockes herself up there, you will have to make that impossible. If not, go in there, take the iphone and get her out of the bathroom or join her if she wants to eat there. It is possible to eat in the bathroom, so if ED thinks that would keep you out - no way.
If you have to call an amubance or take her to ER that might clear up everything. She has to learn that eating is not negotiable. If she doesn´t eat or drink at home, someone else will make her eat or drink. Not eating or drinking for 24 hours is a case for ER.
Some here experienced that they only needed to go there once.
And in our case seeing that there are people with a nose tube changed a lot.
I would try to interrupt this bathroom thing, too. If she doesn´t need to go to the loo or have a shower, there is no need to be in the bathroom. Hang the door out if necessary.
If she doesn´t want to get out of the bed, so breakfast is coming to the bed...there is no possibility to have no lunch/snack.
I too would think that it is only a blip. ED is testing wether you have control or not. Try to get back on path, some "safe foods" would be a good idea. I don´t think she has given up, your little d in there is waiting for you to help her to fight that bastard. ED is just testing you out. Take a deep breath and show him where the door is.
Send you a big hug from Germany,
Tina72

EC_Mom

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Reply with quote  #10 
We took off our d's door and set up a curtain instead. A good idea for the bathroom?

You can disconnect wifi, or install parental controls.

The physical violence stuff can be awful. You can call police. Or you can contact police, explain your situation, and tell your d. My d was really impressed/scared when I told her that I'd talked to police and would be calling them if need be. It did stop her in the moments of violence when I calmly reached for the phone.
EC_Mom

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Reply with quote  #11 
Also, it strikes me that you are trying with all your heart to talk to her in a rational way. The ED won't let her think and respond rationally. Compassion is good, but explaining how she won't get to do x or y in a few days is really not helpful in the moment when ED is in charge. I took out photos of d's friends and talked about them and how they would be at Saturday's party, and how much they wanted her there. More 'positive' than 'punitive'. It's really hard, it requires creatvity to figure out ways to support the patient in fighting ED just enough to get a bite in.
eternalhope

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Reply with quote  #12 
Thanks for everyone’s replies. To answer a few questions, the day she was in the bathroom for 12 hours reading the iPhone, she refused to give it back. Because of her odd, we are guided to drop the rope and not escalate situations. Case in point, we did remove the doors back in May, but she went out side for 12 hours and as fate would have it, a storm blew threw our neighborhood and knocked out power. My h said her would reinstall the doors so she would come back in the house as we were under a tornado watch. The door to the bathroom goes inward and has no lock so we can push our way in if she isn’t barricading it. We told her we would remove the doors again, and she just countered with she’d go outside again. We had police come talk to her before treatment (about an hour plus) and 2 nights later we called 911 when she was throwing furniture and combative. So we have gone down that path. It was a terrible night, they didn’t not tube feed her or even give her fluids. The police asked me if I wanted to press charges for assault but that I would have to appear in court. This was at the height of the ed, and she was in inpatient treatment with in a week or 2, placed on a ng tube day 1 and had it in place for 6 weeks. It’s 1 pm, and she still has not gotten out of bed. This has not happened before. She has not been diagnosed with depression but I’m concerned. Have not heard back from therapist yet.
mjkz

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Reply with quote  #13 
Eternalhope, while I understand about the ODD, at the same time you are never going to get anywhere letting her call all the shots.  If she barricades herself in the bathroom, the door needs to come off and if she wants to sit outside for 12 hours, she will eventually come in or let her know you will be calling the police and telling them she is missing or something like that.  Get her out of bed and lock her bedroom door so that she can't go back to bed.  If that isn't possible, have your husband help you get her up and out in the mornings.  Any violence at all, call the police and have them take her to the nearest ER to be evaluated for admission.  Rewards never motivated my daughter at all and trying them just made her dig in deeper.  I hope you hear from your therapist soon and they do something.

When my daughter was like that, I ran home just like she was inpatient.  The inpatient unit does not tolerate any violence, etc.  Some things you may have to just live with right now.  If she is not going to school and not going to bed until late, it makes sense that she is sleeping so late.  I had to lock the bathroom doors after a certain time at night to keep my daughter from spending all night in there (body checking, peeing constantly to make her stomach flatter).  It is so hard.
eternalhope

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Reply with quote  #14 
Thank you mjkz. She was defiant with the dietitian yesterday and dietitian and therapist agree she is relapsing and needs a higher level of care. I have an assessment with local ERC for iop or php on Monday. She has been informed of this. She ate “lunch” at 7:30 last night, then snack at 8:15 and almost completed dinner (3 tacos and big cookie). It was a lot of food in 2 1/2 hours. She stalled, couldn’t finish looked miserable, wanted a heating pad and laid down on the living room couch. We’re turned out the light and let her sleep. She was up around 3am in the bathroom for about a half hour. Still sleeping. We are tying to get her up to start the day and get on track with breakfast 3 meals/3 snacks.
mjkz

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Reply with quote  #15 
It sounds like a higher level of care is definitely the way to go then.  I hate it when this happens.  It happened to us too where things would seem to be going fine and then she'd stop eating and let everything go.  Absolutely crazy making.
eternalhope

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Reply with quote  #16 
Mjkz- I have read about your d’s experience in adullt ERC. Did she do any PHP programs after that? Did you find them helpful? Or was it all outpatient and your family guiding her by taking over her meals? I am very fortunate my d never developed the hyper metabolism, so we’re able to hang on in no immediate danger.
HateEDwithApassion

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Reply with quote  #17 

Hi,
I just jumped over to your thread. Thank you for checking in with me while going through such hardship of your own. Gosh, this is so hard.

I know you may not want to do this, but you usually can turn off a phone temporarily and turn it back on. I would also take the door off. But gosh - I don't know that much about ODD, so I wouldn't even want to try and weigh in on that.

As far as IOP and PHP, I honestly think PHP is the best of all worlds. It gives a lot of meal support and therapy, but your child has to come home each day, so they don't get used to living/eating in a bubble and then struggle to come back home and eat. My D was 19, however, when she did it for the first time. I felt comfortable, by then, that she wouldn't be meeting other who would teach her tricks and some of the other worries we all have about treatment centers. With a younger D, I guess I would want to know the program is pretty locked down when it comes to that.

I didn't have a child in the ERC world, but all I saw of the children/teen program, I think it seemed very solid. They are totally supportive of parent involvement and their education for parents is outstanding. They get the science of what's happening and they certainly are used to all fo the arguments, emotional issues, struggles these kids have.

Any issues we had with them were not really due to their treatment philosophy, but an unfortunate result of having a resistant, trouble-making adult patient who fought them the whole time.  I will pray for your family. 


__________________
17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Torie

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Reply with quote  #18 
Hi EH - So sorry to hear of all the difficulty, but glad you have reason to hope the professionals will step in.

I just wanted to mention that some have had good luck waking ED-kid up with smoothie in hand: "Here, drink this" and then she can roll over and go back to sleep.  It's almost like ED isn't fully awake and can't put up the usual amount of resistance.

I don't know much about ODD.  I do know that ED makes most of our kids OCD-ish, with some autistic characteristics thrown in for good measure so it makes sense that as ED gets stronger, the OCD symptoms increase.

Good luck and please keep us posted.  xx

-Torie

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tina72

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Reply with quote  #19 
Hi,
I really think she is trying to use this not getting up thing for not eating. If you let her stay in bed and miss meals, ED will win.
If she had no history of depression before ED it will be caused by malnutrition. My d had these depressive shut downs just by not eating for more than 5 hours and get low blood sugar level. It was very important to get a constant schedule of eating around the day. Not getting up was no option. She had to get up at last at 9 a.m. even in holidays to eat breakfast. You cannot get 3 meals and 2-3 snacks into her if she is sleeping the whole day.
If she refuses to give the smartphone back this must have consequences. Put down the internet or lock her simcard. She is 12 years old. You need to show ED who is the boss.
I don´t know much about odd and ocd because we do not have this dx much here in Germany. If that was not there when she was a very little child and pre ED, I would suggest that it might be ED behaviour. ED makes them do a lot of strange things...
Try to make her get up no matter what is needed.
Tina72
mjkz

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Reply with quote  #20 
Quote:
Mjkz- I have read about your d’s experience in adullt ERC. Did she do any PHP programs after that? Did you find them helpful? Or was it all outpatient and your family guiding her by taking over her meals? I am very fortunate my d never developed the hyper metabolism, so we’re able to hang on in no immediate danger.


No.  Like HateEDwithapassion's daughter, my daughter was kicked out with no follow up, no transition home, nothing.  She never had a good PHP program to go to.  All the ones around us are 6-8 hours a day five days a week and none were geared towards ED.  Most of her treatment was inpatient or residential, then home.  The PHP she did try were not very successful because she deteriorated and ended up needing inpatient.  Obviously with a 12 year old your experience may be very different.  My concern for a PHP with your daughter is that they usually have a very low threshold for tolerating ODD type of behavior and so any kind of ODD behavior in our case led to repeated reevaluations and meetings I had to go to the PHP for with a "suspension" type of thing (like from school) until she could follow the rules.  Again, your experience may be very different but if she refuses to cooperate in PHP and does what she does at home, she won't be there very long which may not be a bad thing.  It sounds like they handled her well inpatient and didn't put up with the ODD behavior.

I know you and hubby had a hard time getting on the same page with your daughter and her eating.  At some point, you're going to have to challenge her ODD behaviors to get anywhere.  I know it is hard and sometimes the yield for the effort is very low.  I was lucky to have a big friend to call who between the two of us we were able to curb my daughter's ODD stuff and make her comply with getting up in the morning, getting her to the table, getting her to appointments, etc.  That's not to say it didn't pop up again at different times but once we really got through to her that resistance was futile, she became much more compliant.
HateEDwithApassion

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Reply with quote  #21 
How are things going these days Eternal? Thinking of you...


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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
eternalhope

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Reply with quote  #22 
Thank you for asking HafeEdWithAPassion. Things are not going well. 7 straight days she refused to go to bed (she would say she wanted to get back on track, but she has some sort of OCD ritual that would keep her in the bathroom for 2 hours plus.) She would refuse to get into bed and stay up late. She missed school on the Thursday and Friday 10 days ago because she could not get up. She would refuse to eat until she showered. She wouldn’t shower until late (Thursday she was in the bathroom 12 hours), and then wouldn’t eat her first meal of the day until late in the day- 6:30pm, 7:30p, 6:30p, 4:30, 12:30 (the earliest), so we enrolled her in the local ERC PHP program (we had success with ERC’s Residential and PHP programs in Denver). We told her that night, and she stayed up until 4:30a, refusing to go to bed. She sabotaged it, and her principal came to our house with the school councilor and she refused to see them. This was the 4th day she had missed school, so they explained hey would have to start truancy proceedings if she did not attend the PHP program. She stayed up until 2:30 the next night, refusing to go to bed. For all of these days she missed school, she had lost electronics and tv, and trips to the zoo, as she was not attending school, going to bed at late hours and hadn’t followed her meal plan in 7 days. Her behavior became more erratic, and so we told her she need to come with us to be evaluated. She refused and became combative, throwing things in the living room and throwing things at us. We called 911. She went by ambulance to the ER. We were there 15 hours. She refused to eat until she showered. The hospital let her shower there at 10pm. She finally ate dinner and snack. . She was admitted to a psyche ward at a local behavioral hospital, under ED protocols. Unfortunately they are very old school but at least she was eating. She did not fit their ED unit criteria. Labs and weight from the Er were great, although the underlying issue is ED- she figured out by refusing to come to bed (odd), she was able to eat less in the day (when you don’t start until 7:30p, how much food can you eat in 3 hours?) the place has been a mixed bag. She is getting to bed there, but I had to call multiple times to make sure they were giving her snacks, as the weekend am snack was dropped for the adolescent unit. The nurse told her, “your mom wants you to eat this.” I also had to tell the nurse She needed help selecting. She could not self select like the other adolescents. The place
Has agreed to follow our FBT program as best as they can, but it’s not what they typically do. Her review date is tomorrow. Today’s family therapy session was a disaster. She got upset, said she wants to run her own meal plan, told me how much she hates me and ERC Denver and that if I called any more, she would refuse to eat. She said I was overbearing an choking her. She started crying, left the room and never returned. I didn’t call tonight to let things calm down. She isn’t ready to come home, but I dont know if this has done more harm than good. It was all leading up to a 911 call. She wasn’t attending school, PHP, missed a therapy appointment and wasn’t sleeping. She was threatening not to eat if I didn’t take her to the park. We were very worried about her mental state. The psychiatrist talked to her about medication but she refused to take it. Tomorrow I will touch base with the therapist again. She also complained that they fed her too much as lunch.
EDAction

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Reply with quote  #23 
Keep going eternalhope.  My heart breaks for you, your H and your D.  But you are doing the right thing.  You are getting help for your D, evaluating that help and deciding what to do next.  Keep going.  You are going forward into strong headwinds, but keep putting one foot in front of the other.  Picture your fellow caregivers on this forum standing behind you, hands to your back, helping you move forward in spite of those headwinds.

It sounds like you are questioning whether this is the right place for your D.  Let us know how the review goes tomorrow.

I hope you are able to get some sleep and wake up strong again tomorrow.  





eternalhope

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Reply with quote  #24 
They are discharging her tonight as she is not suidcial or a threat to others. She told the program manager she will refuse to go to treatment tomorrow at ERC, that she hates ERC. We will do our best to get her there.
scaredmom

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Reply with quote  #25 
Hi eternalhope
I hope all goes well tomorrow. I am so sorry that you are going through all this. All the best
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