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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Ronson
Hi 

you mention your d refused medication.  This was a big turnaround for us. So it might be worth pushing that again.

when my d didn’t want to socialise I arranged ‘play dates’ she was also 13 at the time but it can be done if you know other parents with kids of a similar age.  This helped d to remain involved. 

Much of these symptoms for us improved also over time - wr for 1.5 months is early.  I would push for more weight (can never do any harm) and give it time. 

The work situation is a difficult one - if she is wr could she go back to school part time allowing you to work ? Is there extra support available at school ? 
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Ronson
Oh and I sometimes find that all her Ed clothes are all wet in the wash at the same time so she needs to wear something else. 
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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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