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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Rose321
Hello.  I am distraught because I don't know what is right for my 16 year old daughter.  She has been struggling with a restrictive eating disorder since she was 11.  She has had a treatment team of her therapist, nutritionist and doctor.  Her therapist was not an eating disorder specialist, but was consulting with a specialist.  She was doing quiet well until last year when she went traveling for a few weeks and being out of her support structure sent her into a relapse.  She has been underweight, not dramatically so, but not able to make WR for the last six months.  We started her in a PHP program two days ago and it feels like we are now in a worse crisis than we have ever been in.  Many of the teens there seem much more impacted than she is, and she is scared and angry and withdrawn.  She is refusing to talk to us and does not believe she belongs in this program. I can't tell if she is right that she should not be in this program, or that it is the eating disorder talking.  I've never seen her like this.  I am so worried that having her in this program is making her think of herself as sicker than she is, and it's isolating her from her friends and causing her to be depressed and scared.  I thought doing this program was the right thing and would help her, but it's put us into the most intense crisis we have experienced.  Are these programs ever bad for kids?  Now that she is in it, would it be letting the ED "win" to pull her out?  Will my sweet happy girl ever come back?  I don't know who to turn to for help so here I am.  Thank you, 
Rose
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Kali

Dear Rose321,

So sorry you are having doubts about how to proceed in the best way for your daughter.
I think the right thing to do here depends on a lot of things.

I agree that PHP/IOP programs can be tricky based on our experiences with them. Some patients may be on their way up towards weight restoration and remission and others will be on their way down, losing more weight and becoming more ill so it is going to be a mix. It can be triggering to sit at a table eating with a group of people who do not want to eat. The treatment can vary vastly from program to program and some are better than others. 

On the other hand, a good program can offer structure, therapy, meal supervision and can introduce and reinforce the concept of working towards recovery and what that might entail.

How is her eating at home? Is she completing meals and is there someone there to make sure she eats?

The depression is of concern so hopefully the php will be able to help her with that. 

Since you are talking about php and that seems to be a uniquely US treatment program, I'm assuming you are in the US. Have you ever looked into the one week program at UCSD which many families have found helpful to jumpstart refeeding at home? Many families have found it helpful. 

http://eatingdisorders.ucsd.edu/

I'm sure other wise carers will be along soon to welcome you and throw in their two cents and offer their support and experience.


warmly,

Kali

Food=Love
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Rose321
Thank you so much, Kali.  I never imagined that it would mean so much to me to know there are other caregivers out there struggling with these issues and willing to offer support.  It makes me believe in the goodness of the world, and that will get me through another day.

She is eating at home, very compliant with her meal plan (including adding back foods she has been restricting) and stopped exercise as soon as we told her she needed to.  So she seems to be invested in her recovery.  But she hits walls and can't get to full WR, which is why we are in PHP (and is how I know the ED is stronger than it sometimes seems -- it lets her get a little healthy, but not all the way.)

The hardest thing -- which I know there is no answer to -- is trying to hear what is her voice (which is a beautiful, wise voice who knows herself well) and her eating disorder voice.  When she says she doesn't need this level of care, and it's scary and isolating and an overreaction, is that her or is that ED?  I think I have to treat it like ED, because the risk is so high, but I don't want to diminish her own voice.  I just don't want to kill off her voice.  I just don't know.

Thanks for being there.  I needed it.
Rose
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Mamaroo
The hardest thing -- which I know there is no answer to -- is trying to hear what is her voice (which is a beautiful, wise voice who knows herself well) and her eating disorder voice.  When she says she doesn't need this level of care, and it's scary and isolating and an overreaction, is that her or is that ED?  I think I have to treat it like ED, because the risk is so high, but I don't want to diminish her own voice.  I just don't want to kill off her voice.  I just don't know.


You won't kill off her voice, but you are right that the voice you are hearing now, is in all probability ED (and or anxiety). You gave her an opportunity to refeed at home and she was unable to comply, so she does need a higher level of care. If indeed, she doesn't need to be there, it will become clear very soon and then she would be discharged from the program. My d didn't believe she was sick enough for IP, so every day we went to the emergency department and I showed her how full it was and explained to her that they won't keep her there if she was not ill. That still didn't convince her, though. It is very hard to accept treatment if one thinks one is not ill, it would be much easier to treat this illness if the patient just could see what we did, until that day just have lots of compassion for your d.

Sending you a lot 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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tina72
Rose321 wrote:

She is eating at home, very compliant with her meal plan (including adding back foods she has been restricting) and stopped exercise as soon as we told her she needed to.  So she seems to be invested in her recovery.  But she hits walls and can't get to full WR, which is why we are in PHP (and is how I know the ED is stronger than it sometimes seems -- it lets her get a little healthy, but not all the way.)


What is keeping her from getting WR again? Is she secretly purging? Over exercising? If both is a no, then I would suspect she is not eating enough. Are you plating her food or does she decide herself how much and what to eat?
Is she knowing her weight? I had to fight hard for blind weighing but since we do that I had no problems any more to get her WR and over the target as well.

If the PHP is not feeding her with more food then you can do at home and the other girls are more triggering than doing good I would rethink a plan B.
Keep feeding. There is light at the end of the tunnel.
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scaredmom

Dear Rose321,
I welcome you to the club! So sorry you needed to find us, though.
You have been given great advice above!
It is great she is eating for you. Many have found the last 10 pounds or so hard to get on to get over the "ED hump". Please look up extinction burst on the forum, it is a great explanation. And may help just to understand what may be happening with the last few pounds or so and why the fight may be so arduous right now.
Do you know what the "wall" is that she hits? We may be able to trouble shoot and come up with something you may try. 
I think treating all of it as ED is a cautious thing as to think it is not ED, there could be repercussions. 
Has she gained while in PHP?

Please ask all the questions you have. We are all ears.
XXX

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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Rose321
Thank you all for your thoughts, care, and advice.  I feel so fortunate to have a place to go with my questions and fears.  My daughter wasn't able to get to full weight recovery despite her hard work and ours.  Ever time she would gain a few pounds, she would start restricting again.  I think the extinction burst is right on point, and she needs the help of the PHP to get through that.  She is gaining some weight on the PHP and I think they will start increasing her intake after the first week which will help too. 

It's just so hard and confusing to face her anger and withdrawal from me and her sadness.  She's never really been like this.  I know it's the ED fighting and I know it's my job to stand up to it and I will do that.  It is so helpful to know you have all faced this too, and that there is something on the other side.

Thank you, so much. 
Rose
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Mamaroo
Here is a link to a good thread on extinction burst:

https://www.aroundthedinnertable.org/post/some-rather-long-musings-on-extinction-burst-relapse-and-recovery-6462360?highlight=extinction+burst&trail=25#gsc.tab=0
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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tina72
How does she know that she gains a few pounds? Does she know her weight and how much she gains?
Keep feeding. There is light at the end of the tunnel.
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deenl
Hi Rose,

Here is an article I found very helpful when my son was distressed.

Wishing you continued 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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scaredmom
Rose321,
Just checking in with you. Hope things are going well.
XXX
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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Rose321
Oh my goodness, thank you all for checking in on me!!!  It means so much, I can't even tell you.  It's late Friday night, and we just finished our first week of PHP.  This has been such a hard and overwhelming week, but I'm feeling a little calmer and at the same time prepared to fight for her health.  She didn't make as much weight recovery this week as they wanted to see -- she's eating 100% of her food, but she just needs more, and now her resistance is really kicking in.  That's okay -- I think I can stand up to that because I know that is what she needs from me.  The article on tolerating your child's distress is so helpful and right on point -- she's using every technique identified in that article. 

I think it's also been hard for me because I'm realizing how serious her ED is.  I think our family had a little fantasy that she wasn't all that bad off, and could be in and out of the program pretty fast.  I'm now seeing some of my own denial -- this is going to take some time, and that's okay. 

Thank you all again for sending your wisdom and strength.  Thank you for being there.  It helps so much.

Rose321
Rose
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Foodsupport_AUS
It sounds as though you are really making headway. Recognising that her distress is because the eating disorder is distressed and not because it is necessarily the wrong way forward. Knowing that path is the way out even though it is terrifying for them is really tough. 

Keep going. 
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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scaredmom
I agree with Foodsupport regarding the distress. I used to think it had to be a calm and easy process then I was doing well. Well, in actuality it is the distress they need to go through to get to the other side. They are so frightened and so of course they will be very upset and so the rages can come out. Then over time they get less scared etc, and it gets better.
I am pleased she is eating.
Yes, it takes time. I am glad you are feeling better too.
Keep posting. We do care and are here to help.
XXX
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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mommiful
Quote:
She didn't make as much weight recovery this week as they wanted to see -- she's eating 100% of her food, but she just needs more


This strikes a chord with me. It's very normal for it to take some time for the team to figure out how much food she needs to gain weight. Most programs start the intake low and increase as needed. However, watch out for stagnation and obfuscation!

Your wording about her weight gain is pretty vague. That makes perfect sense in a post. If that's all the information you're getting from the team, though, you might want to push them to be more specific with you has her parent. We have run into that kind of vague language at a couple of programs. At one we learned after 8 weeks that "not as much weight as we wanted to see" actually meant "she's not gaining any significant amount." At another we learned that the program "doesn't like to share that information with parents." As parents, we have the responsibility of determining whether a program is effective for our child and when to consider other options, and we need information to be able to do this. 

We've also come up against what seemed to us to be unreasonably low intake amounts and slow increases. We know that our daughter has required high intake to gain weight. It has not always been easy to convince the professionals that the reason for her slow or nonexistent weight gain is inadequate intake, and not some other behavior. You probably have a pretty good idea of how much she has been eating at home or how much she has needed in the past to gain. If you think the meal plan they have her on at PHP might not be enough for her to gain well on, don't hesitate to advocate. 


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Rose321
Thanks Mommiful.  They are giving us specific information about her weight at the progarm.  She only gained 1 lb the first week in PHP despite eating 100 percent and having mostly restricted movement.  (She has always had a high metabolism -- I don't know if that is common with ED, but it makes it hard because she has to eat a lot.) They want to see her gaining 2.5 lbs a week so they are going to up her intake starting next week.  I think this is starting to make her very anxious, and we just had to pick her up early from a get together with a friend when I could tell on "find friends" that she was taking a hike.  This is the type of resistance we expected and while it is hard we can do it. 

We are now telling her that her time with friends needs to be at our house.  She is highly resistant, and saying that she needs a break from the pressure at home. (We are trying to create as normal an environment at home as possible, but she's right that home does feel kind of tense right now).  I understand how she feels and so badly want to trust her, but I also know this isn't the time to do that.   She's such an awesome and kind and responsible person, and for her (and us) to feel like we can't trust her is hard and confusing.  I can say to her that its the eating disorder we don't trust, but she's not hearing that. 

I know I keep saying this, but I can't tell you how much I appreciate having all of you out there.  XOXOXOX
Rose
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Foodsupport_AUS
I think it can always be a little bit hard the first week of any program to establish how much someone needs to eat to gain at he required rate. You have of course been having problems getting weight gain happening at home. The need for weight gain and eating more will naturally increase her anxiety but hopefully soon they will get the right balance as to what she needs. It is a lot of food, and I think many of us have also struggled knowing that we would have trouble eating the amount of food we need our children to eat. It is for this reason that many end up reducing the foot print of meals by adding oils as it increases calories without necessarily adding much volume. I hope next week goes better, once she gets into the swing of things. 

As for the trust thing, I think make it clear that this is only for a short time until you can see that she is doing better. Be very welcoming to any and every friend, I offered all sorts of outings etc. to try to make it a more attractive place to be, after all if the friends want to come over it can be hard for her to say no. 
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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tina72
"She has always had a high metabolism -- I don't know if that is common with ED, but it makes it hard because she has to eat a lot."
This is common in refeeding and that is why most professionals set the mp too low and then they do not gain. Some patients gain with 2500-3000 calories but often they need 4000-5000 or more a day and that is really a lot of food. Therefor we try to give them as much as possible on a small footprint.
Keep feeding. There is light at the end of the tunnel.
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scaredmom
Rose321 wrote:
Thanks Mommiful.  They are giving us specific information about her weight at the progarm.  She only gained 1 lb the first week in PHP despite eating 100 percent and having mostly restricted movement.  (She has always had a high metabolism -- I don't know if that is common with ED, but it makes it hard because she has to eat a lot.) They want to see her gaining 2.5 lbs a week so they are going to up her intake starting next week.  I think this is starting to make her very anxious, and we just had to pick her up early from a get together with a friend when I could tell on "find friends" that she was taking a hike.  This is the type of resistance we expected and while it is hard we can do it. 


The fact that she actually gained is really great! As others have said above it takes time to find the right amount of intake to get the weight on more quickly. Many have hypermetabolism per se, and I needed to get my D to eat 4500 for consistent weight gain. Now at just over one year WR she still needs 3000-4000 per day. 
Rose321 wrote:

We are now telling her that her time with friends needs to be at our house.  She is highly resistant, and saying that she needs a break from the pressure at home. (We are trying to create as normal an environment at home as possible, but she's right that home does feel kind of tense right now).  I understand how she feels and so badly want to trust her, but I also know this isn't the time to do that.   She's such an awesome and kind and responsible person, and for her (and us) to feel like we can't trust her is hard and confusing.  I can say to her that its the eating disorder we don't trust, but she's not hearing that. 


I agree having everyone at the house is a good idea. Yes of course it is tense at home right now. You cannot trust her as you say and it is ED. Not sure that whatever you say will help, to be honest. It gets better in time and right now the world in your home has to change a bit and she will deal with it. I like Foodsupport's idea of making you home really attractive to her friends. That way she gets some socialization under your watchful eye. ED cannot hide from you!

I do hope you have time for you too. Something outside of ED, totally non-ED, that nurtures your soul. In retrospect, I wish I had done more for me in the beginning. We live and learn.

Big hug,
XXX
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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Mamaroo
Here is an article on hyper metabolism:  https://www.scienceofeds.org/2014/05/07/hypermetabolism-in-anorexia-nervosa/
I also believe my d always had a high metabolism, she was born hungry. Now I know just to give her more than her sister (who is 18 months older) for the foreseeable future. 
You all probably need a break from the tension at home. Can you organise outings outside of meal times or have meals / snacks eaten in the car on the way to an outing? Even today, when she goes out with friends, I'll buy snacks or lunch for all of them (I don't ask what they want, I just go and buy whatever looks high in calories) and when I give it to her and her friends I hear no complaining, just thank yous.
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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