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Gastro doctor?Open in a New Window

As I mentioned in the other thread, we had some weigh loss with my daughter.  Her pediatrician is NOT an AN expert and honestly seems to learn quite a bit from me. 

That said, she wanted to refer my daughter to a gastro specialist to prescribe her 'appetite stimulants'.  Has anyone done this and did you see any benefit?  I know people with AN learn to get past the hunger pains especially when fully restricting so I'm not sure if it will make a difference either way.  Just wanted to get some feedback/input.  Others have recommended medical marijuana.

Thanks

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Any YAs out there ever feed themselves to recovery from low bmi?Open in a New Window

 D, who has been AN for about four years now, started relapsing 14 months ago and has lost every scrap of weight she put on, is stuck. She has been adamant about feeding herself, and patently it isn't working, now at BMI of 14 or 15. I've told her she is on her last chance, then I take over. I am dreading it, I don't have the same resilience I once had.
I was thinking of hiring a home help- has anyone tried this and found it worked? 
Our insurance doesnt cover hospital, but if she loses more weight, she will have to go and we'll deal with that. That is the plan so far. Is it any good?
I am very burned out now. 

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Self-discharge from IP - what to do?Open in a New Window

My D has been in IP on a general psych ward since October, having previously been admitted from May until August. Her weight has never been dangerously low (her BMI is considered within the 'normal 'range), so her admission was more about trying to challenge the very entrenched ED behaviours and self-harm/severe depression. She's been very much up and down since admission, and we've felt pretty stuck. At least though she was attending the school there, and socialising with people on the ward. 
However, since having a week at home over half term she's now refusing to go back. To her credit, she's been following her meal plan without too much argument, and if she has been self-harming she's hidden it extremely well. She's been getting up, getting dressed, and generally trying to prove that she is 'normal'. This is, however, the girl who was hypoglycaemic and screaming at having to eat even a bit of fruit a couple of weeks ago. As far as she's concerned she can self-discharge and just walk back into her old school (which until now she's refused to attend, even for half a day a week, claiming she didn't care about it), and everything will be fine. 
She's so bloody-minded that if she's suddenly decided that she's going to try to get better, it could just work. I'm keeping an open mind. My concern though is that the effort is going to be too much for her, and that she'll crash, badly. She refuses to see anyone from CAMHS (apparently they're all 'stupid'), although thankfully we've got the Supported Discharge Service on board who can provide more intensive treatment than CAMHS can. Even they say though that my D has to want to engage with them to a certain extent, and I'm not sure she does. 
Do ED sufferers (and remember, my D is EDNOS with AN cognitions, rather than strictly speaking AN) ever manage to turn thinks round, just like that? Or is this going to be horribly painful?

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desperate for adviceOpen in a New Window

Its been a looooong time since I posted anything on these forums, but the past few years have been absolute hell with my D so Im back and in desperate need of some advice-



As Im sure all the UK members know, the NHS is in crisis and my D is just at the age where CAMHS are reluctant to help as shes phasing out of their service in a year but she is still too young for Adult MHS. She currently has a BMI of 15.8 and has recently adopted the argument of 'well 15.8 isnt that low and CAMHS dont think I need treatment so clearly Im fine and dont need to eat'.



What do I do with that?! Logically I know that 15.8 IS low but theres a big part of me that just wants to agree and say that it is fine and that it isnt *that* low because Im tired of fighting. So please fellow parents, any advice at all is welcome. Talk some sense into me or give me a boost, it is desperately needed right now.

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sadOpen in a New Window

So today somebody told me that D's ED needs to be treated by a psychologist and that it's better not to make a fuss about her eating or comment on it, since that might cause her to stop eating instead.  Hearing that makes me really sad because I know that without our unwanted help D will definitely choose to starve.  I told that person that the brain cannot heal without food, but I don't think he understood what I meant.

Seeing GP tomorrow and really hoping the GP will not insist on weighing D, not even blind weighing. I don't want to deal with a meltdown in the GP's office!

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Hostility toward therapistOpen in a New Window

My 18yo D is openly hostile toward our FBT therapist. We have been seeing her for about 5 or 6 weeks now. Prior to that she was in individual therapy with a different person. We are still in FBT phase 1, but D is generally cooperating with eating, has gained about 13 pounds and gotten her period back, normalized labs. Question is: can I expect her hostility to abate as we get more into phase 2? Or should I cut our losses and look for another provider?

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Advice for highschoolerOpen in a New Window

Hi! I have been reading posts on/off for a year now and am so thankful for all the amazing advice.  I am having trouble finding parents with a similar situation though so I thought I would post.  My d is 16 almost 17 and we have been dealing with AN for a year and a 1/2.  Last fall when we reached the bottom of the rabbit hole (i hope) we were facing a short hospitalization due to low heart rate/bp but I was determined to try re-feeding at home so that my daughter could stay at school.  She is a classic overachiever hell bent on getting straight "A's" and we thought that all long as we could get the weight on we should try not to add to her anxiety (she has a strong anxiety disorder) by yanking her out of school. We met her for lunch everyday and monitored all but one snack per day.  We managed to get 2500 kcal/day, working up to 3000. Our journey was rocky with all of the behavioral tornadoes that many of you have faced as well.  We learned to slowly shed our learned ED parent enabling and become stronger in the face of pure destruction. Unlike many AN patients our daughter has remained fiercely social and school focused..threatening to run away if we prevent her from seeing her friends or missing school.  She initially ate just enough to keep us off her back and then eventually with the threat of inpatient treatment over xmas she finally got more on board with the re-feeding.  We are up 12lbs but have 12 more to go just to get her to her pre-AN weight.  Unlike many AN patients she does not seem to fear food or fat. she will eat no problem as long as it is her choice of how and what (she too has given up dairy/red meat). Her original restricting was to calm her anxiety and she has some but not severe body dysmorphia.  Now we seem to be stagnating.  She had been preparing all her own food and/or eating out as she was steadily gaining a pound per week so we felt it best not to rock the boat.  Now however i can tell she is not eating as much and we have not gained anything in 3 weeks.  I am at a loss of how to proceed.  We never got to the "pull her out of school with 100% parental control" because she was good at feeding herself (with us watching)(she makes herself toast with avocado and 2 fried eggs for breakfast for eg.) So she is in school, her behavior is better and she is doing well in her classes but we have reached an impasse..her doctor says we should just do our best to get as much weight on until june then admit her to a day treatment program all summer (which she has stated she will never talk to us again if we do that to her).  That seems so passive to me. I have worked so hard to get her through her junior year it seems weird to pull her out now but i cannot see how we will get those remaining pounds on.  I am panicking as I know she wants to go to college in a year and a half but i cannot see how she will be able to do it.  I feel in a grey zone..her ED is not severe enough (right now) to hospitalize her but I can see all the manipulating the ED is doing to convince us she is ok when i know she is not.  We have told her (via a family contract session with her therapist) that if on her appointment this thursday she hasn't gained the 2 lbs we agreed on (over 2 weeks) then we will increase monitoring. She has been eating like crazy in an attempt to get those 2 lbs before thursday....good she is eating, bad because it is not indicative of a healthy mind.  She just wants us off her back.  I am so tired of catering to her myriad of medical woes (hair falling out, acne, insomnia) when she refuses to take any anxiety meds and isnt eating as much as she needs to get a steady weight gain.  I feel like as soon as i reach my limit and want to pull her out of school to focus on this 100% she ponies up, eats like a champ, gains some weight, we back off, then she coasts for awhile. I am at a loss of what to do right now. any input is greatly appreciated. 

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RefusalOpen in a New Window

Hi all,

First post on here!

Any suggestions of dealing with refusal to eat/drink.

Just realised how much d has been hiding and now more vigilant and so she is refusing.

Also behaviour deteriorated to hysterical outbursts, head banging on walls.

Feeling desperate, trying to avoid in patient admission but not sure we can avoid it, if refusal increases/continues

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Long time no visit so here's an updateOpen in a New Window

I have not posted here in a very long time.  For those who do not recognize my "name", I'm the parent of a woman in her 40's who has been battling with AN/BN for a very, very long time and who has multiple diagnoses that make her life very difficult.  And for her family, so very sad, as well.  I cannot figure out why the bold came on ..... sorry.  not intentional.

There's really no change to report because this year has been all up and down as usual except for the fact that her only substance of choice now  is water.  To some of you who know her background, this may seem like a good thing.  But, in fact, it isn't because now the drill is a weekly stay first in the ER and then in the hospital for a few days so the docs can get her electrolytes back in order so she won't die either of a seizure or heart attack or both.
And, she won't stop.  And, she wants to die but then calls for help when she realizes she might.  Lately, however, when taken to the ER, she becomes furious.  So......

I came home today after driving in to pick her up again to take her where she lives only to be greeted by her nephrologist (who has been working with her) who told me they are keeping her for at least another day because her sodium is already on the downswing.  In a nutshell, she is refusing to follow their recommendations of low(er) fluid intake.

So, after bringing her in a change of clothes and toiletries for her hair (conditioner), etc. and saying hi, I left.  Her language and demeanor towards me has become increasingly rude - abusive is a better word and many of you know what I mean - as her weight also is dropping and I have been advised (rightly so) to visit briefly, reduce the amount of time I spend with her because I've  run out of abuse tolerance, and go home.  

I'm also in "give-up-ville" right now because I know at this point I have done everything, everything possible in all directions with all methods of approach - legal, medical and otherwise - and just need to detach, love her and hope for the best but prepare for the worst.

So, there you have it.  I absolutely detest this disease.  The only bright spot, if one can call it that, happened this week when I received a document about the latest research re Borderline Personality Disorder and it looks like - finally - that researchers are discovering, as they did re schizophrenia and autism and then ED, that this is primarily a genetic disease.  Yet here where I live, even one part of her team still lives in the past with all the myths and misinformation about not only BPD but also ED.

So, even though I am where I am and she is where she is, I am rooting for those of you who are just starting out, want to encourage you to seek all the help you can NOW to get your son or daughter into recovery, and am offering what little help I can by participating in Laura's Starfish package gifting - such a wonderful idea.

Love to you all,





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coping with emotional negotiaons -advice?Open in a New Window

I have never had to hospitalize my daughter thus far, thank God. We caught her AN before it got too far and reined it in with a contract that felt more punitive to her than any good.
She regained most of the weight but typically negotiated and squirmed the closer she got to her target weight.
We rewarded her efforts with more autonomy but now realise we have given in to all the emotional pleading and assurances that she nows what she has to do to keep her weight up etc.
Shes now lost almost all of the weight again and we are left feeling foolish, lied to and irresponsible in our handling of her ED.
Resolved to climb back in the ring we rolled out a plan to take her back to a safer weight ( I'm talking three kilos) by re introducing regular weight monitoring and removing her from her favourite sport - running. (- things she swore she would do herself and couldn't believe we didn't trust her to do it!)
The tears, pleas, excuses and promises are heartbreaking.
Our fears that she will do something rash as a result of the subsequent misery a new plan will cause, are huge.
I'm aware of the ED driving her actions but need some advice on how to strengthen ourselves against all her  disparaging remonstrations.
She also attacks MY assumed lower calorific intake every day and uses it as an excuse as another trigger for her. Note - eating more than her and tucking into foods she doesn't touch does nothing to appease her. Just another stick of the ED to beat me off its mission with maybe?
Anyone else subject to this level of bullying by the ED? How can I toughen up and get through the guilt of these tears and crushing depressions our attempts to help cause?
And am I being over cautious not accepting a drop of a couple of kilos?


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Calorie requirementOpen in a New Window

Case of 19 year old teenage girl, she needs to gain approx 50 lbs to reach BMI 20. Stopped all compulsive exercise, hoping for 1lb a week. How many calories should one aim for during this restoration and will this need to be increased during the process, or will the requirement stay the same throughout? And what is maintenance like after? Thank you for all replies, it truly is helpful 

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HabitOpen in a New Window

I’ve just finished reading an article from New Scientist, (attached for your convenience) regarding habits. What got my attention was, in the insert box, it mentioned anorexia, describing it as “an extreme form of habit”.

The article describes how habits are formed, first the task resides in a part of the brain which is goal orientated as you do the task for the first couple of times. This results in more mental energy needed to perform the task. With repetition, the task moves to the habit area of the brain, which needs a lot less energy to perform. Think of brushing your teeth, you don’t really think about every position and action of the toothbrush, it just happens, your brain is on autopilot.

The article gives a couple of tips to make a habit, namely “schedule it”, “be specific”, “go easy on yourself”, “start now”, and “be patient”. This can be applied to ED treatment. At the beginning I placed the mealplan on the fridge outlying every single meal and snack with the times the meals would be served. This assisted in planning all the meals, freed up time (no more “What am I making for dinner?”) and greatly reducing the anxiety as well. Now everyone knows Wednesdays I serve fish and chips and Sunday we have roast.

The next tip “go easy on yourself” is what to do when slip-ups occur. If breakfast is not eaten, don’t write off the whole day as a failure, just start again at morning tea. Treat yourself and the ED patient with compassion.

Lastly the article ended by stating breaking a bad habit (and replacing it with a good one) can take anything between 18 days and 254 days with an average of 66 days. Obviously with ED, I think we are leaning towards the higher end of the period (sadly).

I would just like to end the post with a couple of my own observations regarding my D and our treatment journey. She became ill at age 9 ½ and was hospitilised while turning 10. She was refed on Ensures. First 1 a day until she could manage 6 a day, we then added snacks. During the ensure- exclusive months the hospital insisted that she still be served meals (to stay in the habit I guess). She only tasted them. I gave her proper food at breakfast, lunch and dinner and discarding them after she tasted it and then gave her the ensure. At snack times, I just gave her the ensures (there is only so much food I can give to the dogs / throw away). When she reached the equivalent of 7 ensures the hospital decided that she needed to switch to proper food at meal times. I found it more easy to get her to eat breakfast, lunch and dinner than snacks. Looking back I guess it had to do with the fact that despite not eating the meals, she was still exposed to them. It took me longer to get her to eat fruit than meat (and this from someone who wanted to be a vegetarian!). This all made sense when I read the article.

Also I used incentives extensively. Initially rewarding her when eating just a little more than the previous day. Then rewarding her when she followed her mealplan the whole day. This lasted for several months (about 8 months which is around 240 days – so towards the higher end of the habit forming phase) until I saw that sitting down and eating wasn’t so stressful any more (it also coincided with the urge to binge). Then one day I told her that there will be no more incentives and she was fine with that.

Our journey is still not over, but with the help and encouragement of our hospital team and this forum, we have renewed energy for this battle.

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FBT phase 2, want to try new strategiesOpen in a New Window

D has no progress since last Dec. except weight gain. She still count calories and refuse to eat any extra food. I counted calories too, if she select food has less calories, I would say "this is not enough, you either select another one, or add something more". Our therapist strongly suggest us to not count calories on every food D eat.  

Since D is consistently gaining weight, even after full WR, now at 0.5 pound per week, and now is 12 pounds over professional target. I think maybe it is time to adjust her meal plan, not just simple reduce the portion, but move on more freedom. Here is my thoughts:

1. slowly, let her choose any type and any amount for one snack first, and gradually move to more meals. 
2. dramatically, let her choose and eat all meals and snack freely.

I'm sure method 2 will loss her weight quickly in short term, but there is still chance that she may pick up, and become fully intuitive eating. Seems too risk, but we can afford at least 5 pounds loss, if things getting worse, I'm pretty sure I can easily roll back to current meal plan. Has anyone done this at stage 2? I probably will go with option 1, just want check if anyone tried #2. 

Thanks,

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Still StuckOpen in a New Window

Thanks everyone for all your responses in the past, my last post was how we ended up in the hospital on Christmas.

My AN D has been in residential treatment since leaving the hospital on 12/30 and still no progress, she is actually 1/2 pound less than when she started.

She needs us, she did so well in the hospital when my wife and I were with her around the clock, she is back eating some foods, but she is so rigid and constantly tries to manipulate her meal plan to less.

Is there any around the clock at home treatment we could combine with a PHP?  We've already be through 5 months of residential in 2015, 9 months of PHP IOP at another facility, and now since her relapse on 12/23/2016 we are in a new residential program that isn't working.

Does anyone have any suggestions or treatment providers to suggest next?  We have good insurance which is turning out to be a curse, because the providers seem to take advantage of it as they keep her forever in residential treatment.  Any suggestions are greatly appreciated, we are in Connecticut so we prefer to keep it with 100 miles. 

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Very new to this and open to any adviceOpen in a New Window

My daughter is nearly 20 and one year ago today she left home for the first time to go to University in another island (about 1.5 hours via plane away). She came home several times in the study breaks last year and initially seemed fine but around mid year it was evident she was struggling. She was having problems sleeping, had anxiety, also described obsessive thoughts around food.
She initiated contact with Student Health and began to see a Clinical Psychologist weekly, also her GP.
It became evident to me that there was an issue with her weight because her GP wanted to refer her to the Eating Disorder Unit and was weighing her weekly.
My d always seemed a bit bemused by it all, as in why is there a fuss - as if it was an over-zealous doctor rather then her issue.
When she came home early December for the summer she was very thin - thinner than I have ever seen her. 
She had become vegan and was smoking - and she said going vegan must have made her lose weight. At that point there were scales in the bathroom at home and she told me she weighed 58kg (height is 178 so to me that was underweight). I did take the scales away as she weighed herself so often.
I also encouraged her to see a GP here which she did and she started Fluoxetine which greatly improved her mood and over the summer she seemed to be back to her old self. She told me the thoughts around food had receded. I prepared healthy vegan meals which she ate and there was never any red flag for me except her never eating breakfast (Neither do I and our family never have), only a small lunch and also seeming to fill up quickly.
At times also she would have second or third helpings. When she left and went back to university 3 weeks ago she weighed herself on the airport scales and her weight was the same -58kg. 
Now I am extremely worried as she tells me her weight has dropped to 54kg -she said she doesn't know how this happened as she is eating properly - but also said she is exercising. She said she feels happy and has energy - but that is a huge weight loss and in my mind puts her dangerously underweight. The eating disorder clinic have rung her as kept the referral on hold and offered her an appointment next week - it is a 3 hour assessment and she has agreed to go. 
My question is how to best support her...she is an adult and lives away from home. She is a high achiever and manages herself and her life incredibly well. I don't want to smother her and respect that she has sought help.
But really I am beside myself with fear. I just need some guidance on which direction to take. Traditionally the 'parent taking control' mode doesn't go well plus I do want her to actually answer the phone when I ring!
If you have read this far, thanks for your support and help, I really do not know where else to turn. R.

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