F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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bconnelly
well - we've given up. Only 7 months in - 3 months of hospitalization - home since end of May - we've had two 911 calls, police escort to the ER - and 10+ other ER visits, shoeboxes filled with vomit found in her closet after two months home, (silly me for only monitoring her bathroom time and only looking for bags of vomit in the garbage cans or remnants in the toilet), bruises, punching, kicking, tackling, psych ward admission, running away multiple times a week where we have to chase her down with the car, suicidal ideation (hence psych ward), attempting to jump out her 2nd floor window, trying to cut her stomach off...last week she even ate wheat on purpose (she has celiac disease - and her reaction is to projectile vomit about 20 minutes after eating - too bad for her that is was after snack and the wheat got mixed in with her snack food - no reaction - and she ate it for no reason! Boy that ticked her off!)

So we're done. The stress on my family - my other two kids - is just too much.

Her therapist agrees. Therapist says she is the worst case that she has seen in her years of practice. She said we have put up with more than a lot of families would take.

So we are on the wait list for Ontario Shores - anyone have any feedback on the inpatient program? She'd be going for probably 6 months (so we've been told). After all of this - she is still only 3 lbs (!!!) from WR - but it has been extremely difficult getting those lbs on since her last discharge.

Also looking into locations in the States or other provinces in Canada - we are desperate at this point - any feedback?

I know that a lot of you - God bless you - have been putting up with this for longer than us - we do feel like we are giving up on kid - can't help but feel that way - we are just at a loss for how we can help her when she doesn't want help.

Thanks for any feedback.
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ooKoo
Oh gosh, you are not giving up on her, not at all. Far from it, your D needs a higher level of care at this point, and you recognise this. You are doing heroes work. I am sure our more experienced FEASTIE friends will comment soon, but sending lots of stregnth in the meantime. X
UK - South East

19 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions. 
2017: CAMHS CBT. WR, dropped out of 2 different colleges and started an apprenticeship.  Started having grand mal seizures and was diagnosed with epilepsy in Nov 2017. Sacked from job because of this.  Tribunal ensued.
2018 - doing a Psychology degree through Open University and working in retail to pay her way in life. Relapses with eating disorder in June 18 and Nov 18 😢. 

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
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momupnorth
when we first started down this path, we looked into Ontario Shores as our last resort...we wanted to know what they were about,etc.
what my h did find out was that the doctor in charge of the eating disorder program there used to run the e.d. program at sick kids and is considered an authority on the disorder.  Her name is Dr. Pinhas and she is considered to be top in her field.
my h. was very impressed with her credentials.  he was also quite impressed when he did a bit of research on the facility.
not sure if this is much help, but we did decide that is where our d would go if required.  we are not at that stage at this point. 
hope this helps.
momupnorth
Mom Up North
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mjkz
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well - we've given up.


You are not giving up. You are reviewing the progress at home, realizing that she needs a higher level of care and looking for it.  I think too many parents get stuck and don't realize sooner that a higher level of care is needed.  Sometimes you have to step back and look at the big picture.  Good luck in your searching.
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Torie
Good for you to accept that your d needs higher level of care. Not everyone can do that.

Keep swimming. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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bconnelly
Thank you momupnorth for the feedback on Ontario Shores. I appreciate it. Eases my mind that she will be in good hands if we can get her in.

I have read a lot of the books and watched the videos of the Maudsley Method and the issue is not that my daughter is not eating. We are getting 3500-4000 calories in her per day. We are strict with the rules - make her eat every bite on her plate - she doesn't get a say in what she is served. Eats every 3 hours. We don't even let her set the table so she can set out her own glass for milk as she'll pick the smallest one....

The issue is how quickly she escalates into a fit of rage after eating - we just cannot manage that. She has broken stuff in our house (torn shower curtain rods out of the wall and towel racks), she has kicked and punched me - her Dad - tackled her sister - run away several times to the point we had to call 911 - this is all after she has eaten. She is escalating even more now that we figured out her scheme of puking in shoeboxes and hiding them in her room. Every day - after every meal/snack - she escalates. The tools taught last time in IP don't work she says - we try taking her for walks or playing frisbee - kicking the soccer ball etc. - she is just so quick to anger. I don't know how to bring her down after she escalates - besides taking her out for some sort of "exercise"  - which I know feeds the eating disorder's compulsion for eat and then wear it off.

Yesterday she was angry because she went to a training course for volunteer work and she had to sit down for 2 hours - she never sits down - only to eat. We are working on it but figured one step at a time - eat first - we can work on sitting down when she is in a better place mentally. 

I will read this one...Janet Treasure's book "Skills based learning for caring for a loved on with an eating disorder" as suggested by toothfairy - I have not read that one yet - just wrapping up Decoding Anorexia which really helped me to understand the science behind this disease (this is not my fault - not hers either)

Thanks for the words of encouragement - hard not to feel like I am giving up - but deep down I know that it will be the best thing for her.

Anyone have any ideas for helping your daughter calm down after eating???? 

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momupnorth
I know it feels like giving up but you are not....you are doing everything you can to help your daughter!
Another good read is "Ed Says, You Said eating disorder translator" by Alexander and Sangster. I found that it helped me get into my d's head when she said or did certain things and helped me realize when it was the ed talking and not my d.  It literally does try to translate what the person with ed says and hears when we talk.  a true eye opener for me.
As for calming down, we try letting her pick a favorite show to watch after eating (movie, Netflix show, tv, etc).  even if it means binge watching something (Grey'S Anatomy is a current fav) past seasons, it does help her  stay calm.  the only other thing that worked for me (she never really exhibits the anger toward anyone else) is to take myself out of the equation.  In the early days, this was extremely hard for me to do but we both benefitted from it.  She never apologizes for her behaviour but is almost always happy to see me later.  She is more able to calm herself now knowing that if I say I will go, I will and she doesn't want that.
Hope this helps a bit.  Sending virtual hugs and support.
momupnorth
Mom Up North
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bconnelly
We've just received confirmation that our daughter will be heading into IP treatment at Ontario Shores in October. Now it is a waiting game at home trying to keep her weight in a good place so that they will take her.

After her last fit of rage at the therapist's office two weeks ago (it was very loud - and violent - so difficult) I was told by both her psychiatrist and her therapist to "ease up" on her treatment at home - knowing she will be going away soon enough. I am not sure how to "ease up" as we have been living as our own "in patient" unit since January - we watch her 24/7 due to risk of purging and self harm. How do I go about easing up??? They've suggested that we watch her for an hour after she eats - and if she attempts to purge after that - to just let her - if she locks herself in the bathroom - to just let her - don't intervene as much as we have been - as any time I've ever stopped her or caught her - she gets really violent - especially with me.  They've also suggested to let her be on her own more - which is hard for me - as I've been on her all day every day for 7 months. To let her do the behaviours that I've been told to stop for months - I just don't know how to stop myself from stopping her - anyone else feel that way? Anyone else told to ease up before their kid went into IP?

Also - think I've asked this before - but any feedback on Ontario Shores would be great. I know they keep them for as long as she needs to be there - but wondering about schooling (very important to her - we know not important right now but she won't accept that) - wondering about family involvement as it is 2 hours from home. Any feedback would be appreciated.
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mnmomUSA
I have no feedback on that program, but did want to say you are doing hero's work!  I can't imagine all you have been through, but still you persist!  You are taking all the steps you need to to get her well, and sometimes that includes residential treatment.  

It would be very hard for me to "back off" any at all.  My D, at least, can lose a huge amount of weight very quickly if she "backs off" on her eating.  October is 6+ weeks away...and my D could easily lose 20-30 pounds in that much time if she ate what she wanted to eat while ill.  So, that would be my concern for your D....she will drop so much weight and then be "too sick" for the residential program.  If you think that might be the case, I'd be inclined to keep up as much as you can bear in the meantime...whatever that amount is.  
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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Psycho_Mom
Hi,

Getting your d the very best care possible, whether it's at home or hospital, is not giving up--it's the opposite!!

Also, the advice to let your d purge or do other harmful behaviors, is you can possibly prevent them, seems highly, HIGHLY questionable to me. I suppose the idea is to give yourself and your family a break, but....I'm pretty sure that if your d loses weight it will NOT be easier for anyone. 

Has olanzapine been tried for your d's anxiety after eating? 

How about DBT? DBT is all about handling anxiety peaks.

Also, if her behavior is this bad, it's very possible she'll need much more than 3 lbs before symptoms get better.


These are all good questions to ask, I think, of any program you are considering for your d. Will they use medications? How do they determine wr range, how much weight gain per week do they aim for, how much will they involve caregivers in treatment and how will they prepare caregivers for when d comes home, do they offer DBT or CBT? Are they an evidence-based program?


This is from Ontario Shores info page on their AN treatment:

"An interprofessional approach is the most effective treatment route and typically involves psychotherapy, nutritional guidance, individual, group and family counselling, medications and sometimes hospitalization."

I'd find out what they mean by "nutritional guidance", because if it means nutrition and weight gain isn't required or is up to the sufferer, or they think psychotherapy can work without or before wr, or that your d can "choose" to eat....oh, dear. Ask questions.

best wishes,







D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Torie
As the others have said, it seems very odd to me that they are telling you to back off. When the "professionals" finally get around to treating our Ed-kids, they do pretty much what we advise here: Full nutrition required, full supervision provided, etc. (Well, the evidence-based treatment providers, anyway.) I will never understand why WE are advised to back off, especially when the very people making that recommendation simultaneously agree that the higher level of care is needed, where the "professionals" will do the very things we're advised to back off from.

Bah.

Hang in there. It does get better. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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mjkz
Sounds like the "professionals" are scared of your daughter's reaction.  Backing off is the last thing you should be doing even if she is going inpatient.  Scary that you would even be given that advice.
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sahmmy
Reading your post "I was told by both her psychiatrist and her therapist to "ease up" on her treatment at home - knowing she will be going away soon enough."
My first thought is: Every time I've been told this, I believed it was wrong. Unfortunately, the scale agreed.
Like Tori said, why is it that Mom's are supposed to "back off"?, but full support and supervision is exactly what the professionals are going to do? 
Why is it o.k. for them but not us?
I can't help but wonder if they want the patient to lose more weight to increase the necessary time to recover $? Justify their jobs? They want to be the hero? Make sure she is really sick, and it's not 'just mom' requiring our kids to eat and maintain a decent weight?
bconnelly - I think you should hang in there. Keep her as well as you are able until she goes. Then be grateful for the time to recharge.

Love*Power*Fullness
d=18, R-AN, Generalized Anxiety Disorder. Refed at home with information gathered from this forum and lots of books. Relapsed. Refed. Relapsed. Refed. 17 sessions with an excellent individual therapist. 19 sessions with unhelpful dietician. 3 sessions of DBT (didn't like it). Psychiatrist available if needed. Prozac - fail. Lexapro - fail. 5HTP - fail. Clorazepam/Klonopin = major improvement, only used when necessary. Genomind SLC6A4 short/short - not able to process SSRI's.
d=15, lost 14 lbs in 8 months, Ped [nono]diagnosed as a crystal on a hair in the ear canal
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Kali

Hi Bconnelly,

You are in a tough spot and I admire what you are doing for your d.
I've also been in the place of having a very ill d. at home while waiting to get her into residential.
During that time these were my goals. I thought they were sensible and I say goals because I was not able to be entirely successful with this; she needed more help than we could give her at home.

1. No further weight loss; try to get some weight on her if possible.
2. Feed her as much as possible and eat with her.
3. Try to interrupt purging or exercise. 
4. Try to make sure she had enough supervision so that she did not self harm. 

I'm not really sure why the professionals would be asking you to "let up" but remember you do not have to follow their advice if you do not agree. I do hope that they did not say this in front of you and D. at the same time since it would seem as though they are giving her permission to purge. 

I hope your d. will get good treatment and make progress while at Ontario Shores.

Kali







Food=Love
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bconnelly
Thanks all for the advice - and when I went back to the therapist's office the next week - she said they they had discussed what they had told me last week about easing up - and then said that they didn't really tell me what that looks like.

So we continue her meds (Prozac/Olanzapine) - we still try to hit the 3750 calorie range (right now we are at about 3000-3200 - she won't eat everything serves but eats the majority) - we monitor her exercise - just as we had been - but we give her more freedom. Once it has been an hour/hour and a half after she has eaten - she won't be able to purge much out anyway.  She is down 6 lbs since last hospital stay - but still within her BMI and only 7 lbs from WR. We'll keep pushing food and stopping the purging - but are going to stop preventing her from self-examination, trying to get her to sit down during the day - all the ED behaviours that before - when we'd address it - she'd get so angry and violent and would have a huge outburst. We are going to let those go.

I am still strict - and I make her follow the rules - but before, we'd make her be with us all day because of the fear of purging or self harm - and now she has some freedom back - which has reduced the violence (she still hit my yesterday - but it was a smaller outburst compared to previous). 

She is also very depressed (which may be why the violence has eased) as we informed her about IP. She is adamant that she is not sick (diagnosed 8 months ago - still not accepting) and that she does not need to go anywhere and she said she will refuse to eat until she goes...we've told her if she does that, she'll end up in hospital first - then transferred to IP after that.

I will ask Ontario Shores all the questions suggested.

Thanks all for the support - we'll just keep feeding her and supporting her until she goes. 
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momupnorth
how is she doing lately?
Been thinking of you and hoping she is ok.
momupnorth
Mom Up North
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bconnelly
Not great - but not horrible. No news from the in patient facility - but we believe she'll still be going in October

We've "eased up" on the supervision as directed by her therapist and psychiatrist so the arguing and violence have lessened but last week - after I caught her purging at home again - she admitted to puking up her breakfast once she gets off the bus at school since she started back. She is also not eating the lunch we are sending (she eats 1 out of the 4 things we send - sometimes it is the PB&J sandwich and sometimes it is just the apple or the juice box). At least she brings what she doesn't eat home - which shocks our therapist. She eats with 2 friends - she says they are the ones encouraging her to eat so she doesn't want to disappoint them.

The OCD side of this disease has started to rear its ugly head - from needing to shower exactly 1 hour after dinner - no more - no less - freaks her out - the tooth brushing - the shower process itself - washes herself in a pattern - and repeats the pattern 3 times in the shower -it seems like she is getting more OCD behaviours as the disease progresses.

So still a waiting game - she is starting to "accept" that she is going to inpatient - asking lots of questions about it - but then within an hour of a meal - she is screaming at us that she is not going and we can't make her. 

Weight is down - she is losing about 1/2 lb a week - have to keep her above the 75% of weight threshold or the in patient facility won't take her. She is still about 20 lbs away from that...so losing the 1/2 lb a week until she goes away is not horrible (says our therapist). Don't get me wrong - we are still feeding her 5 times a day - as much as we can...we haven't given up - we just know that she needs more help than we can give her.

Anyway - thanks for asking - will post here once we get a spot at Ontario Shores - can only pray that it is when they said she would go.

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bconnelly
daughter has been in in-patient since Dec 2016...anyone with a child in Ontario Shores???

Her weight has been continually dropping since early Feb so she is back down to what she was when she was admitted to the program (101 lbs). She had a very rough week because they took away all of her activities about 2 weeks ago – sedentary activities only  – and she is getting  antsy not being able to do anything. I guess after rounds on Wednesday she got particularly upset because they now have to increase her meal plan and not allow her to substitute anything. She admitted to her social worker that she will always figure out the lowest calorie option – so now – she is not allowed to choose. Also she is back on fully supervised showers – with the weight loss – they believe that she is continuing to purge.

Also her heart rate and blood pressure are getting too low – to the point where they don’t think it is a good idea for her to go home this weekend. She is now at medical risk again – yay. Her vitals have improved since rounds – but her weight is not at a good place. Her OCD is also still out of control - around showering routines, eating behaviours, exercise routines...

They have discussed medication with her – but she is adamant that she does not need it – however Tim and I expressed to the social worker that they need to push this – they agreed – but they need her to own the decision that she needs to take something – otherwise – she will just end up purging it up – or hiding it like she did at home – it serves no purpose if she won’t keep the pill in – either that or they move to injections.

She was also upset this week as she is rather lonely – feels like the other girls have a better connection with each other – because they were in other hospital treatment programs together – and she doesn’t have anyone there – but that is her disease talking to her – letting her think she no one likes her and that she doesn’t deserve their friendship.

So my husband is going to visit her tonight – and we are all going to visit her on Sunday. We can’t go tomorrow as my other 2 kids have activities. She was rather upset when we told her we wouldn’t be there Saturday – claimed her sister's soccer is more important than her – but she has to realize that we have 2 other children and that our life cannot revolve around her illness –or her siblings will grow up to resent her (even more than they do now).

I do still firmly believe that she is in the right place. Although she hasn’t made strides physically – she has made small strides mentally – she now talks to the social worker (which she never used to – she would just sit in the room and stare at the wall) – and she has actually booked more than one session in a week with her. She has admitted – out loud to them – that she is purging – that she is planking in bed during the night – that she is picking her meals based on calories and not on preferences – that she wasn’t taking her iron (spitting it out behind her curtain in her room) – so she is making small steps. She is just not ready to gain the required 14 lbs that they want her to gain – the thought of that is overwhelming for her.

Any advice about inpatient treatment? We've had 2 hospital stays but this is our first experience with an residential care facility.

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mamabear
SOMEONE FOR THE LOVE OF GOD please block Sandy. She is trolling feast. I sent emails early this am to mods.
Persistent, consistent vigilance!
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bconnelly
I don't think I am being insensitive. I am stressed to the nines dealing with this situation so perhaps my way of dealing with things leads to sarcasm in my posting on this site.

I thought that my daughter had finally gotten past the medical issues with the disease as she had been stable prior to being admitted to residential care - and I am frustrated as I feel like she is back to square one with her medical treatment. 

I asked for an opinion of people's experiences with residential care - not for opinions on my state of mind or coping mechanisms. I have never once been insensitive towards my daughter in front of her or her caretakers. 

I have been very sensitive - for the last year and a half since her diagnosis. Oversensitive actually - to the point of ending up in tears most days - so the fact that I am now trying to use sarcasm or humour to assist me in getting through the day - shouldn't be of anyone's concern but my own.

I am asking for help - not for judgement.

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bconnelly
Thanks Mamabear - I was really offended by her comment until I saw your note! [smile]
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melstevUK
sandy_12345

Unless you are a carer you should not be posting here.  I have looked at your profile and don't see an email.

I am sorry if you are suffering from an eating disorder yourself.  Please seek help - but do not try and prevent parents from doing their utmost to help their children recover from an illness that they are incapable of understanding.  They are ill.  They do not always realise this. 

Go find another website to post on because your comments are not welcome here and we do not support your views.
Believe you can and you're halfway there.
Theodore Roosevelt.
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AUSSIEedfamily
Dear Mod Squad,

Hope you can block her soon I just sent an e-mail to feast about her.
ED Dad
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Foodsupport_AUS
Sorry that things are going so slowly in your D's residential stay. Given this is not an option here, I can in no way comment on what is expected or not from her care. What I can say is that her thoughts and behaviours sound very normal for someone with an active eating disorder. 
No one should be surprised that she feels compelled to exercise, to purge or to restrict her intake to the lowest calorie option that is available on the meal plan. 

Allowing her this sort of choice may be perpetuating her illness. Many who have recovered from ED often say that having someone else make the choice for them regarding food and intake, requiring eating is kind of relieving. It does not however stop the anxiety about eating or about weight gain, but at least they can't blame themselves if someone else has made the choice for them. It sounds as though the plan of more rest, increased food and less choice is a good one, it just begs the question as to why they took four months to do it. She may never be truly motivated to gain the weight. 

As for medication, the fear about taking this often goes with a fear of gaining weight on it. The benefits though are somewhat limited. I would encourage along the lines that it may help her anxiety and distress, but at the same time if she will not take it regularly stopping and starting and missed doses is likely to be worse for her. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Torie
bconnelly - I'm really sorry you were in the wrong place at the wrong time so that you were the one who got harassed by the troll.  I hope you don't take it personally - it could have happened to any of us just as easily - it's just that you were the one who happened to post at that particular time.

Please don't forget that we're with you in spirit.

Thinking of you. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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