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

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tp7
Hello,

I need to make a plan for next steps for my 13 year-old daughter and I think that I would really benefit from your collective wisdom.  

My d has been WR (I think) since mid-March, so about a month and a half.  Pre ED she was in the low to mid 30's percentile and she's currently at around the 52nd.  However, her mind is very much not restored. She continues to refuse to go to school, to see friends, to leave the house, or to do anything that a normal 13 year-old would do.  She won't change her clothes, she has HUGE body dysmorphia (to the point of where I'm wondering whether she also has BDD), HUGE social anxiety, she wears a hoodie all the time in order to hide her face, has major Jekyll & Hyde behavior and the absolute smallest thing can set her off.  And that's not even including her reaction to "fear foods", which definitely sets her off.  She has given up every single hobby (used to love to play the piano and the violin) and says that she no longer cares about anything at all now that she looks like a "monster".  She also refuses medication.  

I was laid off from work back in March, which was ok with me at the time as I was going to have to give up my job to care for D anyway.  However I was the main breadwinner, and although my husband is the only one working right now he's still a cancer patient and has needed to take several months off work in 2017 and 2018 for treatment.  When he's taken time off work it's been my job's health insurance that has paid for his treatment.   So we're essentially taking a big risk by having me not work and not have health insurance, because if he ever needed to stop working again then we would lose health coverage both for him and for D.  I was recently offered a job very similar to my last one and with very good benefits.  It's meant to start at the beginning of July.  If I pass up the opportunity it's not the sort of thing I can take up again several months later, as the position will have to be filled.  However with D in the state that she's in it really doesn't feel feasible. But at the same time I feel like I must find a way to take this opportunity or else we're risking not being able to continue to pay for medical care for both my husband and D.

We had been hoping to get D into a PHP program to help her manage her anxiety better, it's one of the few PHP programs that we have found that seem to treat AN along with anxiety and other disorders.  So it's an ED PHP program, but they also heavily focus on anxiety management and they do exposure therapy.  So in addition to monitoring snacks and meals, they will also drive D to different places and get her to go into the building.  However they've now pushed back their start date twice and we don't know when she will be able to start.  She was meant to start in April, then they pushed the start date back to mid-May, and they just called me yesterday to say that they will have to push the date back yet again.  We were seriously hoping that D would get the help that she needs so that I could at least be back at work part-time in July and she would be functional enough to go somewhere for 3-4 hours a day.  But with professional help getting pushed back and us feeling like we can't get her to move past her anxiety at home, we're not sure of what to do.  

So I started looking at a couple of residential care facilities around the country (U.S.) that claim to provide care for not just ED but also anxiety. However I genuinely don't know anything (good or bad) about them.  

Does anyone have any experience with residential facilities that also treat anxiety and mood disorders along with AN?  Are these effective?  We found a couple such as the Center for Discovery and Rosewood Ranch, but don't know anything about them.

I realize from reading these boards that it's still early days given that D has only been WR for 1.5 months.  Maybe we should just give it time?  I know that for many parents that seemed to help.  It's just that D seems to be going backwards in terms of anxiety and I'm starting to panic.  

Basically I feel like I need to do whatever I can to get D to a good enough state by July so that I can work at least part-time.  I thought we could get there and now I'm not so sure.  I'm just wondering what professional services we can leverage, if they happen to exist at all.  Most centers address re-feeding but I haven't found many centers that address panic and anxiety attacks along with AN.  
And is leaving home a good idea if a child is WR?
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Foodsupport_AUS
For my D these symptoms were every bit as problematic if not worse  when her weight was higher rather than lower. Of course many of our kids have background anxiety disorders and working on this directly now that she is weight restored seems the logical way forward. 

We don't have access to residential centers here in Australia anyway - but to be honest I would be very hesitant to go down that path for the problems you are having. I would be concerned that it may not be a supportive enough environment for her to maintain her weight and may set her up for relapse. Even specialist ED centers can have kids going backwards because the change in environment is a stress trigger. Ideally she should recover based at home because that is where she is going to be.

The partial program addressing her anxiety sounds like a great plan in helping her to move forward. We didn't have access to this either. For my D it did take a really long time - around 5 months to get her from complete school refusal to attending. Ironically she was only going to go back part time at the start because of her anxiety but within the week she wanted to go full time. 

Some thoughts - is she on, or have you considered some medication for anxiety - it was something that really turned things around for us. 
We worked on graded outings and activities to slowly but surely get her back to interacting in life. There was never any punishment or requirement for her to do things. This was negotiated with her, along the lines of I know you are really unhappy and miserable at present, and I know you don't want to live like this. What one thing would you like to do today that is out of the house? Even walking down the street is a start. Going in to the back yard. The clothes for us were one of the later ones to work on. Have you considered using a pet to help you? For my D attending to the needs of her puppy was an incredible motivator - she could do things for the puppy she could not do for herself. 

My D has not returned to all her previous activities or interests but has developed new ones, of course at 13 things are in a great stage of transition and it is hard to know where things will end. It will improve with time too. 

My own D did also get great benefit from therapy - she did not talk about her ED to her therapist for a long time. But she did talk about how bad she felt and was willing to work on strategies to improve her anxiety. 
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
tp7 wrote:

My d has been WR (I think) since mid-March, so about a month and a half.  Pre ED she was in the low to mid 30's percentile and she's currently at around the 52nd.  However, her mind is very much not restored.


It is really early days for brain recovery. After reaching a good weight it took about 4 months to see slowly progress here. Some needed 6-12 months. Try to be patient, keep feeding and mark your calendar. I am sure you will see some progress until summer.

tp7 wrote:
She continues to refuse to go to school, to see friends, to leave the house, or to do anything that a normal 13 year-old would do.  She won't change her clothes, she has HUGE body dysmorphia (to the point of where I'm wondering whether she also has BDD), HUGE social anxiety, she wears a hoodie all the time in order to hide her face, has major Jekyll & Hyde behavior and the absolute smallest thing can set her off.  And that's not even including her reaction to "fear foods", which definitely sets her off.  She has given up every single hobby (used to love to play the piano and the violin) and says that she no longer cares about anything at all now that she looks like a "monster".  She also refuses medication.  


That is also quite normal for that state. Try to pull her out into life a bit. Ask her to join you to some shops to help you make decisions about furniture, wall paint, be creative 🙂. Ask some good friends (that could stand being send away) to come over "by incident". Or some family members that she loved then. Did she have a piano teacher? We asked my ds music teacher to come around for a lesson. He stood in front of door some time x and she did not send him away...
Regarding the clothes, the laundry is a great excuse. Clothes must go to the laundry for hygienic standards, then she must wear something else for 2 hours or so. Increase that (you forget to put on the washing machine, it is not dry yet...be creative) slowly.

tp7 wrote:
I was laid off from work back in March, which was ok with me at the time as I was going to have to give up my job to care for D anyway.  However I was the main breadwinner, and although my husband is the only one working right now he's still a cancer patient and has needed to take several months off work in 2017 and 2018 for treatment.  When he's taken time off work it's been my job's health insurance that has paid for his treatment.   So we're essentially taking a big risk by having me not work and not have health insurance, because if he ever needed to stop working again then we would lose health coverage both for him and for D.  I was recently offered a job very similar to my last one and with very good benefits.  It's meant to start at the beginning of July.  If I pass up the opportunity it's not the sort of thing I can take up again several months later, as the position will have to be filled.  However with D in the state that she's in it really doesn't feel feasible. But at the same time I feel like I must find a way to take this opportunity or else we're risking not being able to continue to pay for medical care for both my husband and D.


I would take that job. July is some time to go and I think you will see some progress until then. If needed you can quit it again. This chance will not come again so soon. Can you do it part-time?

tp7 wrote:
We had been hoping to get D into a PHP program to help her manage her anxiety better, it's one of the few PHP programs that we have found that seem to treat AN along with anxiety and other disorders.  So it's an ED PHP program, but they also heavily focus on anxiety management and they do exposure therapy.  So in addition to monitoring snacks and meals, they will also drive D to different places and get her to go into the building.  However they've now pushed back their start date twice and we don't know when she will be able to start.  She was meant to start in April, then they pushed the start date back to mid-May, and they just called me yesterday to say that they will have to push the date back yet again.  We were seriously hoping that D would get the help that she needs so that I could at least be back at work part-time in July and she would be functional enough to go somewhere for 3-4 hours a day.  But with professional help getting pushed back and us feeling like we can't get her to move past her anxiety at home, we're not sure of what to do.  


That is bad. It would be a great help. Did they tell you why it is delayed again? If it would start until July you could work at least in that time...

tp7 wrote:
I realize from reading these boards that it's still early days given that D has only been WR for 1.5 months.  Maybe we should just give it time?  I know that for many parents that seemed to help.  It's just that D seems to be going backwards in terms of anxiety and I'm starting to panic. 
Basically I feel like I need to do whatever I can to get D to a good enough state by July so that I can work at least part-time.  I thought we could get there and now I'm not so sure.


It is quite normal that anxiety increases first before it gets better. The big question is how you react to it. Do you give in and let her stay in this anxious state or do you ask her slowly but constant to leave her comfort zone. You can work on anxiety the same way as on fear food. Exposition, exposition, exposition. She will go through the roof on day 1 and yes, it is hard to watch that and make it happen but on day 2 it will get better and on day 3 we often saw big progress. After a week most issues were done. So make a list what you need to work on. Fear food, leavig home, talking to strangers, see her friends, whatever the issues are. If you make a plan and work on it every day until end of June you could probably be more relaxed then. It is really hard work but our d has really grown inside with that and is today in a better state then before ED moved in.
Keep feeding. There is light at the end of the tunnel.
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mtkmbc4
It sounds like you are in the US. Many states have provisions for medical assistance (Medicaid) coverage for children with severe chronic diseases (eating disorders certainly count in that category). This coverage is given regardless of family income and regardless of having another employer sponsored insurance plan. If she retains the private insurance, the medical assistance is only used as a secondary and can pick up costs not covered by the primary (even co-pays)

In some states, to become eligible for medical assistance, the child must have social security disability papers completed. If you have a children’s hospital nearby, their social workers could advise you on what’s possible in your state. 

Just mentioning this in response to your concern about possibly losing coverage for her.
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tp7
Hello,

  It's been such a long time since I provided an update, but I first wanted to start by thanking all of you for your very sound advice when I've needed it.  You have helped me far more than any professional that we have seen up until this point.  D (13 years old) has been going to PHP for two months now, and she's nearing the end of their program.  Unfortunately, there hasn't been a ton of change in her willingness to get over her anxiety, her body image or her ED.  

She has been WR since March, and she's now WR++.  But her brain still seems stuck.  Her body dysmorphia continues to be a huge issue - she still thinks she looks like a "monster" (her words) and is EXTREMELY oppositional about 90% of the time.  She has basically decided that since she's being "forced" to eat, she will not have anything whatsoever to do with the outside world.  And she hasn't budged from that state of mind since February.  She has played plenty of games with us for months, asking for rewards in exchange for extremely small steps forward (like texting a friend to see how she's doing).  We fell for it for a while, hoping that we could entice her to engage with the outside world again.  But eventually we realized that she still has no genuine intention of doing so, she's just stalling and playing games with us to see what she can get out of us.  

She absolutely refuses to:
   - Change her clothes (she wears the same baggy clothes every day with her hoodie up most of the time)
   - See a single friend
   - Go to school (it's the summer now but she refused to go since February and says she has no plans to return in September)
   - Have any hobbies at all (she used to be a passionate musician)
   - Set foot in a restaurant
   - Do anything that anyone could define as "fun", like an amusement park
   - Set foot in any shop at all
   - Go to any public places
   - Take any type of medication whatsoever (anti-anxiety, etc.)

She has really checked out of life altogether.  When she leaves the house she wears a hoodie and sunglasses at all times.  

The people at the partial hospitalization program spent the first 5 weeks telling us that they knew better and that with enough rewards they would be able to entice D to move forward.  We tried to warn them that she's really good at playing games with people, but they weren't initially very receptive to our feedback.  After the first 5 weeks of telling us to give her more "rewards" (like internet time, new iPhone cases, money, etc.) in exchange for very small steps (like taking her hoodie down for 45 minutes) they finally came to the same conclusion that she's playing games with everyone and doesn't have any real intention at this point of overcoming her fears.
Because of her extreme body dysmorphia, she's absolutely terrified of seeing anyone she knows.  No amount of "rewards" can get her to agree to see a friend.  

I've put my life entirely on hold to help her. I cannot find the words to describe how incredibly frustrating it has been to feel like we've gotten nowhere in terms of getting her to want to live her life.  I struggle not to feel resentment.  My younger son and my husband have paid a large price as well.  Yesterday was my son's 10th birthday, and D had already said that she was not going out to eat no matter what.  In the end it wasn't an issue because my son had a friend over and didn't feel like going out (he had a party the previous day).  But I could see that D was prepared to cause a huge scene to avoid going to a restaurant, not caring about whether she ruined her brother's birthday or not.  

On top of that, the people at PHP have now introduced "choice" at snack time.  They usually give her a choice of two equivalent snacks, supposedly to give her an opportunity to challenge her ED thoughts.  From my observation, the only thing that this accomplished is giving the ED a chance to "win".  For example, I've noticed that no matter how equivalent two snacks might be, there is one which in her mind is "healthier" and she will always pick that one.  They're of the opinion that if we continue to not give her choices, she will never learn to eat independently.  I'm not really sure that I believe that, as I don't feel like her brain is restored enough right now to be able to reason through any of what they're saying.  She just keeps giving into the ED thoughts.  But I've gone along with it because nutritionally at this point she can have either snack, and we didn't want to pull her out of PHP since it at least gives her somewhere to go to in the day.  

The people at PHP are now suggesting a residential ED program for D.  It's mainly DBT and CBT rather than FBT (with supervised meals). My husband and I are strongly considering it because apart from the re-feeding process, we haven't gotten very far with FBT.  Plus we're wondering whether having D live elsewhere for a while without us might help her react.  She was in inpatient in February for 4 weeks, and fear of going back has kept her motivated to eat. 

It sounds like many other parents were able to entice their children to engage in life by insisting that they come with them to the shops, or telling their children that their baggy clothes were dirty.  In our case that unfortunately hasn't worked.  D will simply not leave the house without her baggy clothes, regardless of how much we insist.  She won't get out of the car if she doesn't want to go somewhere.  We've left her in the car for hours on purpose in order to encourage her to get bored and get out, but with no luck.  Her anxiety is greater than any amount of boredom that she may feel. 

Have any parents had similar experiences with their children in this situation?




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Mamaroo
tp7 wrote:

The people at PHP are now suggesting a residential ED program for D.  It's mainly DBT and CBT rather than FBT (with supervised meals). My husband and I are strongly considering it because apart from the re-feeding process, we haven't gotten very far with FBT.  Plus we're wondering whether having D live elsewhere for a while without us might help her react.  She was in inpatient in February for 4 weeks, and fear of going back has kept her motivated to eat. 


Sorry that your d is still struggling, it seems she is a bit stuck at the moment. I think taking her to a residential program is a good idea. The change in environment and routine might be what she needs to initiate a change. In addition, I think you all need a break from ED as well. It will give you time to focus on something else and to recharge your batteries. Sending you 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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debra18
You said that the "threat"of going back to IP is making her cooperate to eat. Can you use this "threat" so that she will start going out of the house? Maybe weekly plans and if she can't accomplish them she will have to go?
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tina72
What does she think about the residential program? Will she go or is she afraid of it?
Keep feeding. There is light at the end of the tunnel.
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tp7
She definitely doesn't want to go to a residential program and she's afraid of going.  We have been trying to use that as leverage to push her to react and we were hopeful for a while that it was working, but in the end she hasn't been able to face seeing friends no matter what.  She becomes paralyzed and starts saying that she looks awful and can't face them.  Same thing with school.  Her body dysmorphia seems so severe that I'm starting to wonder whether her dysmorphia is part of her AN or whether she has BDD on top of AN.

At this point we've seen enough professionals since February that I'm starting to recognize a certain look that they give us as if to say "Your daughter is above and beyond anything we've seen".  And it feels really lonely, and I ask myself "Now what?".  But we have to keep trying...I talk to her about the bully inside her head every day and how she needs to tell it to get lost. Most of the time she says "stop talking like that", but once in a while she'll concede that there is one. 

If I'm being honest, residential would be partially for her and partially for us. The dysfunction of the whole situation has been a huge weight for us as a family since February, and we're all exhausted.  It would be nice to have a few weeks of normalcy for my son.  I also see my husband getting depressed, although he refuses to do anything about it.  A year ago he was exercising every day and feeling like he was doing everything possible to beat his cancer.  Now he hardly exercises and I can see that he struggles to get out of bed in the morning.  

Thank you for the hugs Mamaroo, they were really needed!!
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mtkmbc4
Also sending a hug your way. I’ve also been sent the clear message before that my child is “above and beyond” and you’re right, being told that is rather terrifying.

I hope that if you decide on residential treatment, you will find a program you like and that then you can feel confident in your decision. It is no bad reflection on you or your parenting skills if she she gets residential treatment. In fact, to choose residential treatment when your child and your family needs it shows great wisdom and courage.
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tina72
"We have been trying to use that as leverage to push her to react and we were hopeful for a while that it was working, but in the end she hasn't been able to face seeing friends no matter what.  She becomes paralyzed and starts saying that she looks awful and can't face them."

My d also did not want to see anybody and said that she looks awful. But when some friend popped in "by incident" 🙂 and was ringing at the door she did never send them away. Worth a try? It is a bit strange to make "play dates" for them at that age (mine was 17) but it helped here.
Keep feeding. There is light at the end of the tunnel.
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