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New member - WR issuesOpen in a New Window

Hi all,

I have been an unregistered visitor to the forum over the last six months. I am in awe of the parents who encourage and cheer and offer hope. Saying thank you isn't enough. You are a lifeline.

I have many questions, but I'll start with my weight restoration one in this post.

We don't have scales in our house, we have never weighed our kids. DD13 lost 25 lbs in 6 weeks right under our noses last fall. We have been part of an outpatient program since, after an initial two-week hospital stay and diagnosis of AN. Weight restoration is happening very slowly.

We are healthy eaters (homemade cakes, cookies, etc.), family meals every night, don't eat fast food... So now we are struggling with the re-feeding. We are told that our goal is to get her back to what she used to eat, not to make her eat things she has never eaten. This is a kid who never ate any condiment; not ketchup, not ranch dressing with her carrots, not peanut butter, not jam. Never liked milkshakes or smoothies. Never ate yogurt. This is a child who had a head of broccoli, not a cookie in the grocery cart as a toddler. (By choice! The rest of our family eats cookies, chips, ice cream, treats..) So we are struggling with the weight restoration.

She is able to eat cheese again, and avocado, and pasta. All fear foods at the start. She has very rigid ED thinking about 'good' and 'bad' foods. It is very difficult to put on weight eating 'healthy'. I so wish she could do a shake or a smoothie, but she never liked them. The eating disorder team wanted a 'dessert' at lunch and dinner. I consulted another expert who agreed with my instinct that if she gets her calories from avocado instead of ice cream, that's okay. I tend to agree with the theory that forcing the treats early on could encourage purging where purging hasn't happened before. I'd rather tackle the treats when she is weight restored and functioning at full brain capacity.

I'm struggling because so many of the re-feeding suggestions are things she never, ever ate. I guess I'm asking if anyone has achieved success without ice cream/cake/etc.?


'Around the Dinner Table' Online Forum for Parents and Carers


I need to pick quick: ERC or Children's DenverOpen in a New Window

My daughter is 19 and has struggled with anorexia for many years.  She has been to Children's Denver 3 times previously.  She will do pretty well for a couple of years and then relapse.  The last time she was hospitalized was in summer of 2014 and then she was doing really well until she went off to college.  We had to bring her home and not permit her to return.  She went to an intake at ERC right after we brought her home but would not consent to go.... ugh!  
We've done FBT since the inception of her illness.  The problems always hit after more freedom is granted to my daughter to eat on her own.  I thought we had a good contingency plan in place when we sent her off to college but that plan was ignored completely.

My daughter said that she wanted to learn how to manage the illness on her own and picked a therapist,  doctor and dietician. At this point,  we thought that perhaps a different approach might work for her,  at lease we hoped. I generally am happy with her team.   She eats two of her meals with me but lunch on her own.  Over the past few months, especially the last month, she has not been able to manage the illness on her own at all.  Her food choices have become more and more restricted.  She is exercising excessively and she is not gaining any weight.  She is severely underweight.  Her labs and EKG are normal but her weight is scary low.

She has finally consented to go to treatment (something her outpatient team supports).  She actually asked to go back to Children's Denver;  she felt desperate at the thought of having to wait to go.  That is good but she also says she will only stay a few weeks. I will cross that bridge when I come to it;  right now I am just thankful that she has agreed to go.

Here is my dilemma:   We visited ERC - Dallas and she didn't like it.  The meal planning there is different than at Chrildren's Denver;   there seemed to be fewer choices.  You pick between three entrees per meal and some of the days showed selections of food she never eats even before her illness. Challenging her rigid food options would be a good thing.  I just fear she will check herself out for this reason alone.   She was also put off that most of the other patients in the adult unit were in their 30s and 40s.    I finally got an appointment for an intake back at Children's-Denver.  Only now she is saying that she would go to ERC.
I see pros and cons to each choice.  At ERC she would do her own meal planning,  which give her the ownership she claims to want.   I would not have to leave my husband and children to live in another state.   I don't know what it would be like her being around older patients.  I'm not sending her to make friend so that isn't my concern.  I'm more afraid that she'll find the food choices at ERC unfamiliar and will check herself out as a result. 

On the other hand,  Children's Denver is familiar. She feels that the staff cares about her.   There are more food choices (although I would be doing all the meal planning).   I think it might be less of a temptation to check herself out of treatment if she is in another state rather than one town over.

I don't know about the cost differences.  They both seem to be covered by our insurance.  Mainly,  I want the program that can get the weight on her, one that can encourage her to stay as long as possible.   I'm scared for her right now.

Our only leverage is not paying for college,  car,  etc. but I'm not sure even that will be enough to motivate her if she decides to check out of treatment.

Any recommendations would be appreciated!


'Around the Dinner Table' Online Forum for Parents and Carers


New Maudsley Workshop Dublin/BelfastOpen in a New Window

I cannot even begin to recommend these people highly enough.....

(Formerly CaredNI)


'Around the Dinner Table' Online Forum for Parents and Carers


Academy for Eating Disorders Patient Carer CommitteeOpen in a New Window

Dear ATDT,

I have just been advised by the Academy for Eating Disorders (AED) That I am now a member of the AED Patient Carer Committee. I will meet the rest of the Patient Carer Committee at the AED ICED conference in Prague.

So I hope that my participation there may assist to have clinicians & researchers hear more about the carer experience & perspective and especially the need for improvements in care & treatment especially for some of the stories from this forum where there are those who have experienced poor treatment.


'Around the Dinner Table' Online Forum for Parents and Carers


Hello. Not sure where to start! Really struggling!Open in a New Window

Hi, there. I hope I'm posting this in the appropriate section.
Where do I begin...? Probably something we've all asked ourselves.
I'm step mother to a beautiful 16 year old, who was Diagnosed in late November 2016. It's getting out of hand. I'm now at a loss and feeling alone and helpless.

A lot has happened over the past year. Her mother was unfortunately diagnosed with schizophrenia which meant D had to come live with ourselves as her mum spent time in unit getting treatment. Mum is well and home now after 7 months, but hubby isn't open to D going back to live with mum as both are still quite vulnerable and worries D's needs will be neglected, (and I hate to say this is true as she went to stay with mum for a week and lost 2lbs after her weight was maintaining/slowly rising.)

About D. She was always a bubbly girl, very hyper. Lots of friends. Too many if you ask me. Attends private school (I tell you this because when consulted about D's condition, hubby's payment for the term was all they were concerned about) and took part in lots of activities. Gymnastics, swimming, tennis and running (All of which we have now been advised to put a stop to). She was an active teen, and already very slim.
Her own siblings are either travelling or at uni, as are 3 of my eldest. I think at times she must be feeling lonely, even with the amount of friends she has. She is very close to my girls, but they're not always here by her side.

Her life took a turn when she was 15 and at an end of school party last year in July (I was pregnant at this time and almost due). Not willing to get to into it but as parents, naturally we were angry and shocked, yet advised by friends and other parents: "they're just kids, these things happen"
D was apologising immensely, almost every day, and hubby was very broken by it all. when the situation was still tender, just a week later I went into labour and after that everything was neglected. we never really had a chance to talk about what happened, which I heavily regret. And then throughout august 2016, her mum was having extreme eps and was then taken into care, which was when D came to live with us...

So. I believe it all kicked off when she was to be measured for her uniform since school was beginning Sep 2016. When it arrived, her skirt was a little too tight and this had her in tears. To us it seemed strange and very out of character. We thought we had convinced her that because it was just new it still needed to open up. so once it had been worn a few times, it will fit perfectly and there was nothing wrong with her. "No, you don't have a fat belly, you're a skinny Minnie" 

She is 5'5 and I'm guessing she was around 8 and half Stone (120 lbs) before. we did notice she was eating less and less, but she was always going out or at after school activity so hard to keep track. I apologise if it sounds like I'm making excuses. 

She approached me in October to say she hadn't been getting her period. She did look awfully ill. once always tanned, she skin was pasty. and what happened at this party, I thought the worst. after talking to hubby i booked a dr appointment ASAP. Once there he asked her the usual. Took a blood and urine sample and got in touch a week later to say nothing was wrong and to bring her in again. He spoke to her alone, then called me in. She agreed to let him explain what was going on in her mind, how much she weighed and i felt the world stand still. it was the last thing i expected. He had us referred to a specialist clinic and that's when everything went down hill. Her behaviour was erratic after this. Always standing on the scales, never sitting down, running home from school, refusing to eat. She was always wearing baggy clothes and leggings under her tights to school. She kept her body well hidden. 

We decided to remove the scales from the bathroom, but she then used her own money to buy her own. We took them away as well, but they've since gone missing. Any time we try to ask where they are, it turns into a war. Anything we ask, what she's ate, if she's hungry, and if dad knows she's lying and confronts her, she has a meltdown telling us she can't eat. When she wants to go out, hubby has resorted to bribing her. If she eats dinner she can go out. We then discover she has been purging (literally caught her) when this happens. So we decided going straight to the bathroom after eating was off limits, only to find out she's been taking plastic bags into her bedroom to purge into.

She was attending this clinic to be weighed and to discuss a food diary. At this point she was 7 stones 4 pounds. She was to gain half a kilo a week. As of today she weighs 6 stones 2 pounds, and her weight is continuing to drop. It's as though with the diagnosis and everything else coming to light has set her off. She's hiding letters from the clinic, taking days off school because she's too tired either from lack of nutrients or up all night exercising, she's hiding food, spending hours on end checking her body in the mirror.

A few weeks ago she had woken up in middle of the night, vomiting. I'd gone in to help clean up and found piles of empty wrappers of food stuffed behind her bed. And then under her bed, was a good few boxes of junk food and energy drinks. I didn't want to ask why since she looked embarrassed and started to cry. I comforted her and she eventually told me herself she is too ashamed to eat in front of anyone because we might call her a "greedy fat cow" (her words). I held her and told her we would never ever think that of her, she was beautiful and should be able to enjoy her food with her family. But anything we say doesn't help. We're always back to square one the next day.

She passed out over the easter holidays just there. Hadn't eaten for 5 days.

It is impossible try and get D to eat the slightest thing, dad thinks shouting and bribing is the best solution but I don't know where I stand. She does talk to me about it at times. Always mentions the worry of her dad or anyone seeing her eat and thinking she's fat. Talks about how her mum and sisters and the rest of us all being slim and her being the biggest out of us all. We tell her it's not true but it's like this horrible illness has deafened her to anything we say, and it really has taken her away from us. She has started to hate being out in public and people seeing her, again worrying what they might think of her.

She has exams this year too, and has been studying as much as she can and stresses out over the possibility of failing. This is just piling on top of what she is going through.

There is an awful lot more but I can only write so much. Things are getting tense in the house. Hubby and I have never argued this much and it's mostly over D.

I am here because I myself am at a loss. I want to take the pain she is going through and take it on myself. It's so difficult watching a child you see and love as your own going through something so horrible. They don't deserve this. It's pure evil. I can't believe how much this has changed our lives.

We do have an important appointment in a few weeks to discuss possible inpatient treatment but it's the last thing I want, although it might be for the best. I just want her here all the time under our care, but at home she doesn't seem to be getting any better.

Sorry for the ramble and if this isn't allowed, I apologise further (including any mistakes.) 

Thank you for listening


'Around the Dinner Table' Online Forum for Parents and Carers


So...I knew something was going on. DarnOpen in a New Window

Found out my daughter has been purging.  Knew something was off since she hasn't gained weight in 6 months.  Knew she was ditching food at school and although we weren't very good at patching that hole, we were able to increase her intake at breakfast and dinner.  Still no weight gain. 

The couple of times I noticed her 'using the restroom' I told her no flushing.... but apparently that wasn't good enough.  This is a completely new behavior so outside of not allowing her out of my sight for an hour after meals, I don't know what to do.

School is out at the end of May and I'm going to work from home for the 10 weeks of summer break.  I will be with her for every meal and snack and after.  Please tell me we will be able to stop this new behavior in it's tracks.

I'm feeling so overwhelmed as my husband (her dad) has just been diagnosed with melanoma (skin cancer).  Don't know the stage yet so hoping for the best.  We are choosing not to discuss it with the kids unless we absolutely have to.  If it comes back badly, it is going to send her into a spiral that I don't know if I can beat.

Damn, I'm stressed.


'Around the Dinner Table' Online Forum for Parents and Carers


Aspbergers and EDOpen in a New Window

My 15yo d dx with ED NOS 1 yr ago. She is mostly weight recovered (menses back, but trying to find the magic number that keeps it around.) She successfully attended a week youth group trip (socially successful, but lost weight, but so did everyone.) Back in sports.

The crummy part. We still conflict about reminders to eat enough, things she forgets. Her therapist was having a hard time connecting with her and so she was eval for Aspbergers and yes, she has it- I agree. They call it Autism but Aspbergers is an easier pill for me to swallow.

So now what? Stay with the ED therapist who understands but not totally experienced with Asp or look for new therapist ? What kinds of things should she be working on? All this for a girl who could care less, doesn't want any therapy and just wants to be left alone and us off her back. Sorry kiddo. Not yet.


'Around the Dinner Table' Online Forum for Parents and Carers


locking up foodOpen in a New Window

I have tried this in the past but my AN (purging type) D takes it as a sign that she has over eaten and then restricts even more and the cycle continues. Any thoughts?


'Around the Dinner Table' Online Forum for Parents and Carers


So stuck - so annoyingOpen in a New Window

We have been battling this ugly disease for 30 months now, and so frustrated, my AN D can't let go of the control of what she eats, every program is a battle she is so restrictive, and so controlling, we tried magic plate, LSUYE, my wife is amazing at her mostly calm persistence, and I read all the books, have gone to all the family sessions, and PHP family dinners, and parent groups.  I can amazingly patient, but no one can seem to help her let go of the control of what she eats.  She has been in residential treatment all year, except for 1 week when we took her out and she went right back in because DCF forced us back in treatment. 
She is so stubborn she knows how to work the system so she never gains weight, she is a master at counting calories and menu planning, and when she does finally gain a pound or two she is so aware that she finds away to restrict, especially if it is a pass with us.
It always comes back to be our fault - we are planning to go to the Ohio week long program, but we can't get our D to a PHP weight.  She should be 115-125, everyone has a different opinion, she remains at 97-101 all year.  She had some luck with Xyprexa, but refuses to go back on that, and she was on Prozac which helped with her depression and emotions, but add a lot of complications, blood in urine and stool, and more stomach pain.
There's got to be another way, if I could I would hire a 24 hour proctor and we would watch her like a hawk until every morsel was consumed.  That's what it would take, but I can't handle be around this disease more than 2-3 hours a day - holding in all my emotions and stress is killing me.  I believe she needs the love and support of us, we have maintained a great relationship with her and that is so important to her, and she apologizes so much but still screams at both of us, and we don't scream back, we redirect.  She even restricts water because it makes her feel full - no wonder she has digestive problems, she's probably constantly dehydrated.  She doesn't purge, she doesn't hurt herself, she does well socially, she maintains her grades, she is amazing.  She has lost so much with this disease, and has had so many treatment providers let her down.  They see our unlimited insurance and both residential places seemed to neglect her, she never gets the 3 sessions she is supposed to get.  We want to move her, but hate to start all over again when she is so close to PHP, and this current provider has a PHP that is close enough for us, still an hour away.  


'Around the Dinner Table' Online Forum for Parents and Carers


How not to feel bullied by the illness?Open in a New Window

We have been doing FBT for past 5 weeks with YA d and managed c 1kg a week. Her ED team are 5 hour round trip from home so not had much support. GP is doing blood tests and ECGs and we weigh her once a week. 

When I wouldn't let her go back to uni (& definite IP) I told her we would work together to get her better. She was very frightened & made me promise wt gain would not be too fast. (I honestly believed it was going to be very hard, based on previous ED units' inability to do it.) I had previously insisted on weighing her blind but her therapist didn't (I had asked her to!) so I gave up & d knows how much she is gaining. She typically fixates on numbers.

Wt gain is erratic & ED melt-downs horrendous. In trying to be transparent with d I have tweaked the meal plan up or down and length of daily walk so wt gain remains near the 1kg. She claims I am punishing her when wt gain isn't 1kg. I know this is AN talking & am ready to be more stubborn than the illness.
After  4-5 hr scenes, I really struggle to keep a compassionate, loving, stable and supportive face/self. I feel bullied by AN as the meltdowns leave h & I pale, drawn, exhausted, empty. They are violent & extreme. We have to restrain her to stop her harming herself & she destroys things, screams & struggles. They are very familiar to early ones when 1st ill. Medication not an option- only terrible side effects. (Tried them all.)

My question is is it possible to do FBT at home without family therapy? We are very isolated & she sees no one from choice. Finding a private FT that really knows the illness will need trial & error. We have done a lot of long-distance FT when she was IP over past 2 years.

How do I cope with feeling so traumatised & bullied? I am not giving in to AN but know I must support her in a loving, giving way after the scenes when I just feel like taking cover. I have tried therapy but right now don't have the time or energy between juggling 24 hr supervision & work.
Any ideas how to handle wt gain meltdowns & my stupid 1kg limit? Should we be doing FBT on our own? She is now at a less critical wt so health services not interested.


'Around the Dinner Table' Online Forum for Parents and Carers


At Home With Eating DisordersOpen in a New Window

If you are able to get to Sydney Australia do please consider going to this fantastic conference

Third Australian conference for parents and other carers of people  with an eating disorder
Keynote Speakers:
Prof.  Janet Treasure  OBE
Prof. Stephen Touyz
Dr. Roxanne Rockwell 

Who is this conference for?
Are you are looking after someone with an eating disorder?
Do you want the best information, knowledge & skills to help your loved one? 
Do you want to engage with leading clinicians from around Australia? 
Do you want to meet others who GET what you are going through? 
Then this conference is for you!
You will leave this event feeling inspired and rejuvenated in your battle,
armed with the best information and advice, with new skills and ideas of what to do next, and with a great network of other carers, clinicians and contacts. 
Click here for testimonials from carers and clinicians who attended previous At Home With Eating Disorders conferences.  
If you are a clinician, attend this conference to learn alongside and from the best resource you have at your disposal - the family and carers of those you look after.


'Around the Dinner Table' Online Forum for Parents and Carers


Catch up in London or PragueOpen in a New Window

Dear ATDT,

I will be passing through London on my way to Prague. I will be in London weekend 3rd & 4th & Monday 5th of June 2017 if anyone wants to catch up. I will be in Prague from Tuesday June 6th until Sunday 11th of June.

Doitagain I tried to find away to message you but the ATDT messaging system cant find you. If you still wish to catch up back e-mail me please.

Anyone else that wants to catch up back e-mail me.


'Around the Dinner Table' Online Forum for Parents and Carers


New to the groupOpen in a New Window

Hi - First time here - D - 14 having 3rd appt with dr and nutritionist to see if any weight gain. Am thinking of trying to get her into res- but am I throwing in the towel too soon? She really wants to talk to someone has new therapist only saw twice but then she went on vacation will be back next week. Has really no friends - I think a lot more going on ... am curious about your opinions.


'Around the Dinner Table' Online Forum for Parents and Carers


Some background and a questionOpen in a New Window

This is my first post on this forum. My daughter was diagnosed with anorexia in the Spring of 2016. She was at the time a pretty typical 14 year old high schooler who spent 1/2 of her day at a Culinary School (hindsight) The rest of our story is mirrored in so many of the posts on this forum from total lack of knowledge on the part of our very educated pediatrician to an ineffective therapist and nutritionist team (she got worse and worse). Her period ceased and she became very withdrawn. When I decided through research that FBT made sense to me, I found an FBT therapist and away we went. Although my daughter hated going and FBT was shocking and scary, she is currently weight restored., mood good and period returned. My question is this: We technically only made it through Phase 1 (she will not go back and I too believe that the sessions stopped being effective) She now chooses her own breakfast, I make her lunch and we eat dinner together. She chooses her snacks. I weigh her weekly with a contract that if she doesn't stay in the recommended range or skips a period we will begin to give her meals again and no physical activity (soccer). We've had to do that 1 time. She eats welll but still not ltotally like a normal teenager if there is such a thing. She still talks about eating "healthy" but eats a wide range of food willingly. I am wondering if there is a reason not to continue in this manner regarding the fact that we are doing this unsupervised.


'Around the Dinner Table' Online Forum for Parents and Carers


Waiting for helpOpen in a New Window

Our daughter 19 who is currently relaping is now asking for help. She is trying to get an appointment with REDS the regional eating disorder service and they are not returning our calls and she is beside herself feeling overwhelmed and drowning. Does any one know if private treatment is more effective or is it best to keep pushing to finally be heard in the public system. We are in Auckland New Zealand and would love to hear from anyone who has gone either route.


'Around the Dinner Table' Online Forum for Parents and Carers

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