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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Kookaburra
Hi to everyone in the club no one wants to join. I’ve been enjoying reading lots of advice here. 

I have 16 y.o. D with RAN. As always very smart, hid it for almost a year. We have been attempting to refeed for 3 months, almost no weight gain but have mostly managed 3 meals, 3 snacks. Seeing psychologist, paediatrician, dietician, GP. Was attempting to dial it up so that we could actually get somewhere. I have been reading & watching as much as I can about FBT and how to get your AN kid to eat, being as compassionate as possible etc etc. Yes, Eva M’s lovely book among others. Yes, separating the kid from the illness etc. Tried food plans made in advance, incentives, consequences, etc. We now drive her to & from school and eat lunch with her. Result - me nearly driven insane, she now refusing all food. Her younger brother’s anxiety and OCD has suddenly reoccurred, we have had to separate them as he’s too distressed by her. (Luckily I’m amicably separated so my ex & I can take 1 child each). And yes, AN & OCD same gene pool....!

Obviously we have been avoiding it getting to the point of needing IP, not only because she will be removed from school and friends, but because of the negative things she could learn from the other ANs there. However, I have a limited amount of time left before I will be the one admitted to a psyche ward, so it may be necessary. (And no, my mental health before this was great, I was a resilient & optimistic person who just got on with life despite all its difficulties. AN has nearly broken me though, & I am fully aware that we have not even been long at this).

Looking at Butterfly House/SCHN ”inpatient” program where they are there from 9am to 4pm Mon to Friday. Or possibly just doing the intense multi family therapy during the next school holidays. Has anyone had any experience with these?
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Foodsupport_AUS
Welcome to the forum. I am in Melbourne so can't comment much as to the Sydney program. The Melbourne Butterfly program requires collaboration with the person with the eating disorder. It does leave the person with the ED responsible for preparing and eating their meals, so a complete flip from FBT. My D was too ill at the time we tried to get her to do it and could not/wouid not sign any agreement that suggested she wanted to get better and agreed to gain weight. I do know of a few people who used the program when motivated to recover and they found it extremely helpful. 

If your D is refusing all foods is she still medically stable, does she require hospitalisation?
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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sandie
Hi, what helped me to get weight up was to post here what D was eating and others gave advice about how to add calories eg via cream, oil, grated almonds. Weight gain was very slow until then. 
I was very tearful and found it difficult to cope. I have really benefitted from sertraline. May be worth discussing with your go whether meds may help you cope with the stress and anxiety. Sending you a big hug. 
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blessedmomofgirls
For almost a year we used heavy cream with her whole fat milk at all meals and snacks. Also, high-calorie snacks like Little Debbies have been a lifesaver. 

15 D with AN and severe anxiety disorder  
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Kookaburra
Thanks for the support guys. 
She ate a tiny bit yesterday, still medically stable. Up until then she would refuse all liquid that wasn’t water, other than a nightly fortisip. She doesn’t want to get better, as per the textbooks she really thinks she is absolutely fine and everyone is just making it all up. She even thinks her hair falling out is no cause for alarm. I’ll see how she is in the morning... ED might be a bit insane after a day with little food...

I have started on the St. John’s wort. It’s time for a GP visit tomorrow, will talk to her about more meds for me then too. Ironic - she’s sick and I’m the one needing meds! 
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scaredmom
Hi Kookaburra,
Welcome! I hope we can support you with our experiences. 
I hear your upset. I would suggest if you need meds or therapy to allow you to be your best that you seek help. This illness did bring me to my knees. The PTSD we suffer is real. 
I needed psychological support and did not recognize it until well into the journey. It takes its toll! Please take care of yourself too in anyway you can.
please ask all the questions you have. We all really wish to help you. If we can help lessen another’s burden with ED I think we have done good! 
Sending a hug or ten!
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Barberton
Hi Kookaburra, I am in Perth, so cannot comment on Butterfly House in Sydney.

I have found Tabitha Farrar's podcasts super helpful at helping me reframe my discussions with my d who has AN. We now talk about "mental hunger" and needing to "eat through the fear", which combined with empathy and compassion are having a little bit more impact.

Like you, I have been concerned about what my d may "learn" from others, but I was pleased to discover that when my d. listened to a few of Tabitha's podcasts she began to open up more with me. Perhaps she finally had a realisation that she is not alone in what she is experiencing - although it has taken me a long time to find a voice that is not potentially triggering. Lily Collin's wrote a book about her ED, which I also found non-triggering and helpful for my d.

Do take care of yourself in any way you can. It may be crying in the shower every night or asking a friend to sit with your d for a meal to give yourself a break. But it sounds like you are giving your d the compassion she needs.

Good luck.  
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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Mamaroo
Hi Kookaburra and welcome from me as well. I'm in Perth so also don't have experience with Butterfly House. My d did pretty much the same. Before ED was challenged she ate her daily 3 meals, but as soon as we stopped the exercise and added dr appointments she just ate less and less. I suspect that her anxiety increased and she found it harder and harder to eat. Often they get worse before they can get better.

I see you are taking St John's wort, if it doesn't help, I can recommend EQ control from Nature's own. It takes a week or so to work, but I found it really helpful, just kept me on the right side of sanity 😉. Sending lots of hugs 🤗🤗🤗🤗
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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Kookaburra
Mamaroo- just wondering how did you get your d to eat after she got worse? Mine has had less than 300 calories/ day for last 2 now. That despite spending 9 hours in the Emergency Dept yesterday over concerns with her heart. Unfortunately all her vitals ended up being ok so she came home, only to continue to refuse all food. 

Butterfly House is now a definite, assuming of course she’s not admitted to hospital in the meantime. Which is unlikely, they didn’t seem to want to have her, they are not set up for EDs there. (Westmead has an adolescent ED unit but the dr thought it unlikely she’d currently get in there. Maybe after a few weeks with barely any food she’ll qualify for it). 

Very hard to stay positive with my other child in crisis too and now self-harming. I almost wonder what would happen if I just said to her “eat what you want, it’s up to you” she would rally? I’m guessing you’ll say that’s license for the ED to take over completely, but it has anyway, and all my care is not helping.
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scaredmom
If she is not eating enough I would continue to take her back to the hospital tbh.
https://www.aedweb.org/resources/publications/medical-care-standards
Did they do orthostatic vitals? 
This is very concerning, the lack of any nutrition for two days. 
Is your doctor an Ed doctor? 
I would hate for her to get worse for them to admit her. 
Sending support. 
I am sorry they did not admit her, it may have kick started her weight gain. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
I would suggest a daily visit to the ED department until she is eating more. It is probably worth taking food with you. Westmead does have a world recognised eating disorder unit but of course that does not mean everyone you see is going to be well experienced. 300 cal per day is at a critical level, and her vitals could go off quite quickly. By taking her to ED you will be the squeaky wheel - you need help, but it will also show D's ED that you are taking her behaviour seriously. FYI the NSW guidelines for care are these:http://cedd.org.au/wordpress/wp-content/uploads/2014/09/Guidelines-for-the-admission-of-children-and-young-people-with-an-eating-disorder.pdf  I suspect your daughter may well meet these criteria. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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Mamaroo
Kookaburra wrote:
Mamaroo- just wondering how did you get your d to eat after she got worse? Mine has had less than 300 calories/ day for last 2 now. That despite spending 9 hours in the Emergency Dept yesterday over concerns with her heart. Unfortunately all her vitals ended up being ok so she came home, only to continue to refuse all food. 


It was hard, no doubt. I would present the food and she would refuse, then out came the Ensure, which she would only take a sip. I would tell she could get her incentive if she just had more than the previous meal and also told her "to eat as much or as little as you are able, but you have to have one bite". This took a lot of pressure off and then she was able to eat a couple of bites. I would always push for another bite, just to challenge ED and then give her the incentive. Magic plate did not work for us initially (where I plated the food and she had no say), only close to WR did I do magic plate when she wasn't so reliant of Ensures anymore. So you can ask her what food she would be able to eat, but frame it like this: "I see eating this breakfast is hard, would you rather have a muffin or a yogurt". If she struggles to choose just say: " ok, a muffin then". We got my d to eat food again by giving her a choice what to put on her sandwich, she didn't want the ham and cheese toastie, so I removed the ham and she was able to eat a tiny corner of the toastie. At least it was a start, so the next week, she ate a quarter, then a half and so on until she had the whole thing. The next challenge was a tuna sandwich and we just built on small steps. Remember "from small things, big things come".
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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Barberton
Kookaburra,

Ohhhh! I know that feeling of wanting to just give in and say "do what you want" and hoping she starts to eat! But sadly, it doesn't work that way. She needs you to keep helping her face the fear of food.

We too did exactly what Mamaroo said above and I used distractions in the way of games during meals which really did help. Once my d did her eye rolling, she seemed appreciate the distraction. Monopoly Card Game, Othello, Trivial Pursuit. The more mindless the better. Also, cutting food into smaller pieces helped us too. So if I want her to eat a piece of cake with me, I divide it into smaller pieces so that it's not so overwhelming for her. There were heaps of moments when I just wanted to get up from the table and do anything else, but you have to stay in the fear with her. Write down some one liners for yourself to help you when you are super frustrated as it might keep you on script. "I know this is hard for you, but you are safe." 
 
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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Kookaburra

Oh thank you all so much for the tips - the “just take 1 bite” has been working really well as a way to get just a little bit of food in. And then a little bit more.. then another bite... I’ll have to try more distractions during meal times - she never wants any, but I’ll think of things to do anyway. 

I'm feeling more positive now that the referral process for the IP (which is actually a day patient place) in Butterfly is underway, and I spoke with the Adolescent ED unit at Westmead hospital. It was nice to be taken seriously and have them believe me when I said she’s not eating much, unlike the regular hospital who were somewhat swayed by her apparent lucidity.
Up to 350 cals today, so things looking slightly better...

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Mamaroo
Just keep on going! We played candy crush as well. She would eat and direct my steps. A good day was when she got angry with me, not because of eating, but because I made wrong move on candy crush 🤭
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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scaredmom
Kookaburra, 
Does your d have regular medical checks for her heart rate and blood pressure? 350 cal is really still  starvation mode, I am very concerned about her medical status deteriorating quickly.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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tina72
Distraction, distraction, distraction. I spoon fed my 17 year old d in front of TV. Not thinkable before AN moved in due to family rules (no eating in front of TV). It was the first rule we broke and not the last as you can imagine...
Play card games, internet games, do crosswords. What ever is needed to make her forget that she already had 3 spoons of food...
Keep feeding. There is light at the end of the tunnel.
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deenl
Hi kookaburra,

What a difficult situation! I worry that the biggest danger is that your daughter deteriorates and it feels pointless to take her to the hospital again "because it doesn't do any good and they just sent us home again". scaredmom has emphasised that her intake is still very low. It is true that the human body will hang on, and hang on in the face of starvation and have normal bloods until it just can't any more. I feel that is worth stressing that you should not hesitate to go back to the hospital is your mother's instinct warns you and esp if your daughter is dizzy, has chest pain, has a very low temperature or any other worrying symptoms. Your daughter is ill and it is better to have her checked too often than too seldom.

Wishing you strength and courage, 

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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tina72
Just another thought, many patients find it easier to drink the calories then to eat them at the start. Can you make a fruity "healthy looking" smoothie with canola oil/rapeseed oil added or a milkshake with a lot of cream and ice cream? We got about 1000 calories extra in with 2 drinks every day.
Keep feeding. There is light at the end of the tunnel.
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Lamarque
Hi Kookaburra - we are going to the MFT program at Butterfly in a few weeks. From the paperwork I’ve been given, your treatment team at hospital need to refer you there. If they don’t, you need to go for an assessment. We are at CHW in outpatients but needed to go for an assessment (with the whole family). 
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Kookaburra
Lamarque - we will no doubt see you there then! We are being referred by the psychologist & paediatrician. The MFT can be part of the IP program, and I’m pretty sure it would be good for us. We will need to go for an assessment, but according to the psychologist she pretty much qualifies. Just hoping they don’t need her to be too willing, as - most of the time - she totally thinks she’s fine.
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Lamarque
How did you go Kookaburra? 
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Kookaburra
Well, to cut a long and tearful story short, today we ended up taking her to Westmead hospital (an hour drive for us) for her third emergency visit in a week, where she has been admitted as her vitals were - finally - not great. Her paediatrician had already spoken to the adolescent ED people, so when a bed becomes free there she will go to that ward. (Assuming her heart is better by then too).

Unfortunately the MFT at Butterfly house next week is over full so we can’t get in there, but not sure if she’d be suitable right now anyway

She may still go to Butterfly for the day program after she is finished in the ED ward. 

At Westmead they do a different approach to other ED IP places where the goal is weight restoration as quickly as possible. The kids eat all day and then get feeding tubes all night as well. Average stay 4-6 weeks. My d is HORRIFIED at the thought of that, and would rather spend 6 months in hospital just eating with no NG at all. I think the shorter stay sounds much better. 

I am feeling better than I have for ages - it really is such a nightmare trying to fight the AN beast. I know it’s not over, but it’s a relief to have a short respite. I really hope this is the push that helps us get on top of it. I feel reassured by the others on this forum who also said it helped them start the recovery journey. While she was begging us to let her go home and crying hysterically about hospital, it was good to think that we were not alone in not being able to do it ourselves. We will see....
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Lamarque
Kookaburra, I’m so relieved for you.  

Yes, we were in the same boat except the day my daughter was diagnosed was the day I realised she wasn’t eating enough.  By then she was medically unstable (HR of 40). 

We went to Westmead via emergency and spent a minute waiting before being triaged.  She set off all alarms and was given a bed straight away. NG tube was unpleasant but by that stage, given how unstable she was, completely necessary. I don’t think she realised how dire her situation was (do they ever?). She triggered the rapid response unit a few times when she slept as her heart dipped in to the 30s.  She had the NG tube plus food for around 2 weeks. She also had the overhead heating lamps on her whilst she slept for around two weeks. 

She stayed 3.5 weeks on wade ward.  It was very difficult and the amount of food she had to eat was overwhelming for her but she did it (she is a people pleaser).  If they don’t eat the food they are given, they are given a penalty bolus.

They get them involved in school quite quickly on the ward too.  You’ll be given papers to ‘enrol’ them but any work you can bring in is helpful so they aren’t just sitting there doing puzzles.  They can liaise with the school but eventually my D’s year advisor would send her work directly. 

Bring in her favourite pillow and throw rug for her bed when she gets to the ward.  Everyone (parents) seemed to change the bedsheets on Sundays. 

We were very supported in there. I wish you every strength in the coming weeks. 

 We are almost 12mths post diagnosis now.

If you have any questions, let me know. Happy to help. 

Yes, MFT looks to be very full!
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Mamaroo
Hi Kookaburra, I'm glad your d was admitted. My d spend 2 weeks IP and it kick started her recovery. Take the time to recharge your batteries and do nice things for yourself and the rest of the family. Sending you all lots of hugs 🤗🤗🤗🤗
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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