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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ruoka
My daughter is anorexic 15 . I'm her Dad. I'm taking care of her myself. She was "weight restored ? " . We were doing FBT( Maudsley ). We are 1 year into AN and were in phase 2 .  We were being treated at Stanford. Phase2 was very difficult because I think I took things too fast and introduced too many choices.  My daughter was at mid range bmi and the physician said her period should return. She was pretty steady at weight for about 2 months. However she fluctuated between 110 and 106.  Then we were told she need to get to 114.  At 112 things became very difficult. School ended, she was not going to visit her mom in the summer because of covid and treatment. I had lots of anxiety for her to get to 114. I set that target; the doctors just said it needed to be higher than average. about 2 weeks ago she cut her self for the first time. I tried to take away all the knives but she had one. When she was in the red zone wanted me to leave her alone. I didn't keep her in sight. I thought she had left the house and by the time I got back she called from her room and had non life threatening cut to her neck. She told me she had tried to commit suicide. I took her to emergency and she was admitted. She has been back home a week. Its up and down but she still self harms she picks at old cuts and rubbed her legs raw with the heels of her shoes. She started medication once she left the hospital for anxiety.

Friday our therapist at the FBT meeting told us she was not continuing FBT and we would need IOP. My daughter wanted to continue with FBT.  On top of this, Friday evening she had a low heart rate! This put my anxiety through the roof. All exercise has stopped. Saturday was very rough with each meal being  1.5 hours to get through because she got so upset ., I did at times too. Saturday I didn't know what I was going to do. Luckily , today was calm. I still feel like we got dumped. They won't help us at stanford and will only refer outside. In terms of eating we are still doing 3 meals 3 snacks with my daughter plating her food and I give my input.

Our referals to IOP from the inpatient hospital stay got messed up and they were not sent to eating disorder IOP programs. There was some mix up between therapist recommendations. It really upsets I couldn't get the inpatient hospital to call me back after discharge and they didn't fix the mix up.  What are peoples experiences with IOP for eating disorder in the silicon valley area? its all tele health now with the virus.

Is one on one with a therapist a better approach?
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Barberton

Hi ruoka,

I may not be able to offer much help but I'm in Western Australia and see that you are up very late at night in California, so you are obviously very worried about your daughter so I will try and respond.

I just participated in the FEAST conference and one of the messages that I took away from it was the FBT is the first line of treatment for children 18 and under, BUT that sometimes other treatments are necessary when there are other things going on. There were discussions about DBT (Dialectical Behavioural Therapy) if there are suicidal tendencies that co-exist with an eating disorder. So what your therapist may be crudely telling you is that there are other forms of therapy your d might need right now. ?

Since the core of FBT is to empower the parent to take control of the child's eating, don't let the fact that you feel "dumped" deter you. You can (and should) keep going with FBT even if it's not with the therapist. It sounds like you d is still really distressed by eating and she needs you to make decisions for her and to reassure her that she is safe. My d is a similar age and even though she sometimes responds to me with "Don't treat me like a child", she is a child and she needs me to tell her it's okay to be afraid and that I am with her every step of the way to keep her safe.

As for how you think you are being treated with the mix up in programs - they are only human and you just have to advocate for what you think is right. Keep pushing.

I hope that this helps you a little and that you can get some rest.

Barberton

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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Foodsupport_AUS
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Friday our therapist at the FBT meeting told us she was not continuing FBT and we would need IOP. My daughter wanted to continue with FBT.  On top of this, Friday evening she had a low heart rate! This put my anxiety through the roof. All exercise has stopped. Saturday was very rough with each meal being  1.5 hours to get through because she got so upset ., I did at times too. Saturday I didn't know what I was going to do. Luckily , today was calm. I still feel like we got dumped. They won't help us at stanford and will only refer outside. In terms of eating we are still doing 3 meals 3 snacks with my daughter plating her food and I give my input.

Our referals to IOP from the inpatient hospital stay got messed up and they were not sent to eating disorder IOP programs. There was some mix up between therapist recommendations. It really upsets I couldn't get the inpatient hospital to call me back after discharge and they didn't fix the mix up.  What are peoples experiences with IOP for eating disorder in the silicon valley area? its all tele health now with the virus.


Like Barberton I am in Australia. I am so sorry that the referrals onwards got messed up and that you feel like you were just dumped. It is great that you are continuing on with feeding your child, that is the most  important thing you can do, along with keeping her safe. I would like to reframe this process, though this may not be how you see it. FBT is a great first line treatment for eating disorders but it does not work for everyone. When other factors such as suicidality come into play it is not necessarily considered the best treatment any more. The problem is that there is no best second line treatment. Food and return of normal nutrition is essential, but then the other components are unclear. 

Another positive I can see from your post is that your clinician has been clear that your daughter is underweight and needs to continue to gain weight. Of course they don't know how much she should weigh, although they may have an idea by reviewing her growth charts. What is well known is that your daughter does require her periods for her long term physical and mental health. Many parents report an increase in anxiety as people approach full restoration, this did not happen for us, but it may be that your D is getting closer hence her worsening mental state. 

What should you do? Given I am half way across the world you are in a much better place to judge what program or ideas you should be using. It would seem to me that if they have suggested IOP on line this may be a good way forward. You are still responsible for the meal support, just like FBT. Hopefully however she may have more support for helping with the anxiety which has lead to the self harm and suicidality. This is not typically managed in FBT and this may be why the therapist has recommended another treatment. 

Why do you think your D wanted to continue with FBT? Do you think that she thought she would have to gain more weight in other treatment? Do you think she is just scared of the change? 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Aefw001
Hi Ruoka,
Our family is in the Bay Area and we are just embarking on the IOP search here so I'm happy to share what I've learned so far.  I'm so sorry to hear that your FBT therapist ended things so abruptly and with no assistance in making the transition to IOP.  The IOP programs in the  Bay Area for teens that I'm aware of are two:  Cielo House or Healthy Teen Project (locations in Los altos or SF). Our UCSF treatment team and residential center treatment team (ERC Denver) speaks very highly of Healthy Teen; I'm trying to get our insurance Blue Shield to cover IOP there but HT is reluctant to accept Blue Shield because they have been very difficult to work with. There are IOP programs in Sacramento (ERC) and S. CA (Clementine House) but clearly getting there is difficult. Our 17 yo is currently in PHP at ERC Denver after a brief stay in their residential program. We had been doing FBT for 5 1/2 months when she and us hit a wall that felt like it needed a lot more support to break through. ERC is very good about setting goal weights that are based on your child's whole growth chart (from birth to current) and thus have "higher" targets than many other programs/medical providers. It sounds like your D. may need more weight gain to begin to resume normal periods etc; if you were already in Phase 2 returning to Phase 1 parameters to get that last bit of weight on might be "easier" (for you and your D.) within a highly structured PHP program initially?  
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ruoka
,    I had a bad saturday.  I did escalate a bit and now they are more active in helping me with the references to the IOP programs.  Here in the US everything ever medical establishment is private so I'm having to deal with all kinds of over head including insurance concerns. We were just at the pediatricians and my daughters weight was down a little but resting heart rate was up in 50's so that was good. Yes, I think her weight was never it should have been . I think we took it wrong when Dr said period should return around this weight. She should have been at a higher weight.  FBT did help very much get my daughter most of the way there. She no longer hides food, holds food in her mouth, spits out etc that occurred at lower weights. The self harms seems clearly to me a struggle with the anorexia. She needs more weight and a change so IOP hopefully is it.  Thanks very much for your replies.

Hi Aefw001. thats great.  I'm in the process with Cielo House and Healthy Teen project.  Stanford is now helping. The two others we were referred to were
Center for Discovery (Danville, Menlo Park, Pleasanton)  https://centerfordiscovery.com/  
and
Lotus Collaborative (Santa Cruz, San Francisco) http://www.thelotuscollaborative.com/  
We have united behavioral health . It seems they are all out of network but can try to help negotiate a one time in network exception. I hope that works.
 
We are going for an interview at healthy teen this coming Monday . Its a two hour evaluation meeting. 

Cielo house we are still in process.

Lotus I have an initial call tomorrow.

yes, I think I may need to go back to phase 1 model of food control to help her get to the weight. Its not pleasant but neither is the self harm. I would like your insights going forward  thanks very much for your reply.
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Foodsupport_AUS
It sounds like you are now working on a plan, and making steps forward. It sounds like a terrible maze to work through. I trust you will have her in an IOP soon and hope that should help you move her forward. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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mama2c
Hi Ruoka,

My daughter is a "graduate" of HTP.  The team is excellent.  Most importanly, they know when to refer clients to higher levels of care.  I really feel like they are so good at what they do.

I don't think Lotus Collaborative does FBT. I think it's family systems...but this was last year.  

Stay strong...this can be a long path.
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ruoka
Hi,

We started up at Cielo House.  They had openings and my daughter preferred them over HTP, though this was just based on the vibe. We have both been very happy with Cielo house. My daughter is doing well and it has been a good change of pace for both of us.  I've not had any breaks for about 8 months . Its given her new perspectives and they have an excellent nutritionist . Everyone there has so far been very supportive. They have a good meal plan with an exchange system. This is helping us to avoid conflicts over the meals she has at home. She was super excited when I picked her up last night because they had fried salmon and corn fritters for dinner. She was able to eat them all and talked about how good they were! 
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LaraB
That’s fantastic news. So pleased for you all.
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Foodsupport_AUS
Good to hear that things seem to be going in the right direction. Hopefully she is continuing in weight gain and is being more supported for the other issues. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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