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hangry

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Reply with quote  #1 
Hello everyone,
I am very new to this so apologies if I seem clueless. 
My daughter is 13 turning 14 soon. She is currently in hospital  and will likely be released in a few days. She has been diagnosed with anorexia, but it appears more ARFID. She is not body dysmorphic, but she is more afraid that certain foods will give her parasites, and this has led her to restrict more and more. This OCD/Anxiety has been apparent for a couple of years now, but has intensely magnified as she spiraled down health-wise.
The hospital espouses FBT/Maudsley (Ive read the books at their suggestion) but they don't have anything to offer but once a week outpatient afterward. They're recommending a month residential (Center for Discovery) that doesn't really connect to Maudsley. 
So do we do the residential? Start Maudsley when she returns home? My ex is supportive but not exactly super proactive. 
My daughter and I had been living overseas this past year and I picked up and brought her back to get help when I saw how badly things were deteriorating, so for right now she is in his house while I try to quickly establish a place, a new job, etc. etc. Ugh. Such a mess. 
Anyways, any advice about next steps would be much appreciated.
toothfairy

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Reply with quote  #2 
Hi there,
Welcome, you will find great information and support here.
I do not know much from your post, but I would definitely take the month in a GOOD facility,until you get home stable, and a good plan in place, as even when discharged from a month in hospital, it is just the start of recovery.
She will likely need enormous support and 24/7 supervision for a very long time to come...Sorry to tell you this , it is a marathon and not a sprint, and it is a very steep learning curve.  I would warn you that there are some great and some terrible treatment centres.
Others here will chime in on the facility hopefully, what area in USA is this?
Best wishes

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
hangry

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Reply with quote  #3 
Hello Toothfairy!
We live in Washington DC. She's in Children's Hospital and they are recommending Center for Discovery in Fairfax Va. We visited yesterday. Not horrible, but like I said, I am concerned that it is not Maudsley-focused.
Thanks for the idea of taking the month, though. Things are very unsettled as I literally fled our home in China to bring her "home".
So scared. 
toothfairy

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Reply with quote  #4 
Hi hangry, 
Yes it is a terrifying situation. Well done on taking the massive steps to move across the world to get your D treated. There are some really great facilities, but the other people here that live East Coast USA  will be along soon. There are many resources on this site.and also a search facility on this forum if you use a keyword you will get lots of relevant information.

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
tina72

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Reply with quote  #5 
Hi Hangry:
I´m sorry that you have to join us but you will find help here. It´s difficult to start FBT if you have no help. Here in Germany nowbody knows it and everybody thinks you are a freak [wink]
But it works!
If your situation at home is not stable and safe, I wouldn´t take her home. You need a lot of power and ervery help that you can get. Find a home and get in contact with new friends and neighbors. You may need somebodys help if you are a single parent. If your ex is supportive, invite him to help you.
If the residential program is not FBT, ask what they are doing there and how you as a parent can get in charge. Don´t let them close the door in front of you as in Germany.

Read as many books you can get before your daughter comes home.
I would recommend those:
1) Help your teenager beat an eating disorder. Lock, Le Grange, 2nd Edition ISBN 978-1-4625-1748-0
2) Eating with your anorexic. Collins. ISBN 9780692329955
3) Anorexia and other Eating Disorders. How to help your child eat well and be well: Practical solutions, compassionate communication tools and emotional support for parents of children and teenagers. Musby. ISBN 978-0993059803

What about that:
Washington Center for Eating Disorders and Adolescent Obesity
6410 Rockledge Drive, Ste. 412
Bethesda, MD 20817
(301) 530-0676
http://www.washingtoncenteronline.com
Formerly Suburban Hospital Center for Eating Disorders.


or that:

Joanna Marino, PhD
Licensed Clinical Psychologist
Director
Potomac Behavioral Solutions
2001 Jefferson Davis Highway, Suite 211
Arlington, VA 22202
571-257-3378


Both found on Maudsley parents http://maudsleyparents.org/providerlist.html.

It´s not easy and it´s a long run but it´s the best thing you can do for your daughter. She will get better and live a normal teenager life.
Don´t be afraid, you will get help here and you can do this!

Tina72
hangry

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Reply with quote  #6 
Hello Everyone,
I realize I posted this morning on the reviews of treatment providers thread instead of this forum. Many thanks to those who responded to me there.
I am the mother of a 13 year old girl. Her dad and I are divorced now, and split up two years ago, which is probably the first thing that triggered her eating disorder--yeah, yeah, I know, it would have probably happened any way, but still.... She became a vegetarian later that year and worried about getting parasites. Took her to a therapist for a couple of sessions on dealing with anxiety and that seemed to quiet the fear. In retrospect, this was the beginning of it all coming down. This past summer I moved to China for work and took her with me and I believe this was the final straw. She started restricting, becoming more and more controlling over food, lost her period in February (although it took me to April to notice) and then quickly lost a lot of weight. Decided not to wait until the end of the school year and just flew her home and got her in the hospital the morning after we landed. 
So here we are. She's been following the protocol in the hospital and will probably be discharged in a few days and then on to at least a month residential. Her dad and I are doing pretty well at being on the same page although it's hard not to be triggered with each other. He's a lot more minimizing of it all, and doesn't get the damage that has been done cognitively and physically: probably because he hasn't read as much and done as much research as I have (because that's how I feel better is to learn every thing I can). 
Meanwhile, I have no job, car, health insurance, or home right now. Thank god I have awesome family and friend support. Anyway, thanks for letting me vent/introduce the mess that is life right now. I am confident I'll be putting the pieces back together while she's in residential so that when she gets out I'll be in better shape to support her. Really want and believe in Maudsley approach and hope my ex will be up for it. 
Please think good thoughts for my beautiful daughter. Her anorexia is not really about body image as much as ARFID, but of course it's messy and complicated. She's been completely compliant in hospital and my sense is that she will be in residential too. Then when we get her home she will be vying to control/weigh/etc everything, which is why I want to do Maudsley so that she isn't using her anxiety to stay hyper-focused on her own meal prep, reading ingredients, etc.
What do you think? Does this make sense???


martican

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Reply with quote  #7 
Hi hangry [smile] I am amazed at the speed of your decision to go back home from China. Kudos to you for making it a priority despite leaving you home-less, job-less car-less and insurance-less.
Sounds like you feel you have a support though and you have a plan which is great! I think your plan is very sensible as the transition to home life can be a challenge. Plus, if you will still be in the process of wr, it would be necessary for you to be in charge of meals preps. I am hoping she will stay compliant for you when she is back home too but be prepared for the opposite, or sneaky behavior of ED. Please, keep us updated. Sending lots of strength. 
Torie

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Reply with quote  #8 
Hi hangry - So sorry you needed to join us here.  Sounds like your life has been turned entirely upside-down. Ugh.

I wonder if you need to stay in or near D.C.  If not, perhaps choose your location based on whatever treatment center would best meet your d's needs?  ERC Denver gets rave reviews, for example.  We can suggest other top centers if you're interested and let us know what geographic restrictions you have.

Hang in there.  It does get better.  Really. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Foodsupport_AUS

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Reply with quote  #9 
Welcome to the forum. As others have said, getting your D into treatment and coming home is a great first step. It must be overwhelming for you with a child in hospital, and trying to arrange a home, income. 

Only you can decide which is the best way forward for you and your D. Having made the decision for FBT it sounds as though the real thing is to work out the best way to get that going. FBT is intense and requires a lot of work from the families. Getting weight back on in those first few months are predictive of long term success, so I guess the thing that I would consider most is how is that best going to happen? Have you found an FBT therapist? Are they trained in the method, what experience do they have? How are you and your ex husband going to make full meals every day not not negotiable? Will you be ready to do this on discharge, given the upheaval in your life? Will your ex-husband?

Residential is a model that we don't have here in Australia, so it is hard to comment on how a shorter stay would be helpful other than perhaps to get some more weight on. That being said I can see it being a road block if habits are learned early on, or worse emphasis is put on your D's desire to change and get better. 

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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.
mjkz

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Reply with quote  #10 
Welcome Hangry to the place no one wants to be but is grateful to find when it is needed!!!  I too am amazed at how fast you got things moving and in the right direction.  Definitely take the month to get your feet on the ground again and get yourself settled.  Don't have much more advice as you got a lot of good advice in this thread but wanted to say welcome!!
sk8r31

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Reply with quote  #11 
Hello & welcome to the forum.  Gosh, you have had a challenging journey these past months.  Great that you have gotten back to the states, & are pursuing the best way forward for your d.

Our d also got ill very suddenly while we were away in Europe for my h's sabbatical.  I ended up returning home 4 weeks into the trip, and d was admitted in our regional children's hospital the next day.  It is frightening how quickly things can go south...

Finding the best possible setting for your d is really important.  Dr. Rebecka Pebbles is a shining light in the field of adolescent medicine and EDs, and I believe you can consult with her by phone, or set up an appointment.  She is affiliated with the Children's Hospital of Philadelphia (CHOP).

This is a really wonderful video of a talk that she gave which is geared towards physicians, but also very informative for parents.  She is a very strong proponent of family-based treatment.

Sending you warm support as you navigate the best path forward.


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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
trusttheprocessUSA

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Reply with quote  #12 
I read recently that Duke Center for Eating Disorders may have a 5 day family intensive for AFRID with Dr Nancy Zucker in Durham NC. You could give them a call tomorrow and find out more about the program and see if it's a good fit for FBT, your D and your family.
__________________
Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
EC_Mom

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Reply with quote  #13 
Hangry, ARFID and anorexia are very different from what I understand in a few key ways. FBT, with its no-holds-barred parental temporary takeover (what we call "magic plate") is different from ARFID treatment, with its gentle, gradual laddering. There are similarities because fear and OCD-like stuff must be overcome. 

The parasite fear could mean this is a variant of anorexia, though. Is she more averse to high-calorie foods? I would be careful about making the ARFID decision without good backup, it's a very different treatment path.

Could you consult with Julie O'Toole at Kartini Clinic, for instance?
jsrachels

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Reply with quote  #14 
When ever I hear ocd I think PANDAS. Have you checked her for strep? It's an easy test and would help rule it out. I would hate for anyone to overlook this possibility.
martican

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Reply with quote  #15 


Hi hangry - I finally started watching the videos from the conference, and thought of you when I saw this one. Maybe you already saw it, or got more direction already but you might find there something that helps. 
persist

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Reply with quote  #16 
Dear Hangry,

I am also in the D.C. area and my daughter (the same age as yours) spent six days at Children's shortly after her diagnosis with AN in 2015. There is a D.C-area support group for caregivers of those with eating disorders, and we try to meet up about once a month. We just got together a few weeks ago and there's talk of meeting up again in late July. I'd strongly encourage you to join the group, as you can also ask questions about local (and not so local) treatment options online, before the next in-person meeting. You should be able to sign up for the group by e-mailing dc-edfs-owner@yahoogroups.com. Post here if that doesn't work, and I'll try to help. 

Persist (formerly MDmama; had to change my account due to login issues)
hangry

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Reply with quote  #17 
Quote:
Originally Posted by persist
Dear Hangry,

I am also in the D.C. area and my daughter (the same age as yours) spent six days at Children's shortly after her diagnosis with AN in 2015. There is a D.C-area support group for caregivers of those with eating disorders, and we try to meet up about once a month. We just got together a few weeks ago and there's talk of meeting up again in late July. I'd strongly encourage you to join the group, as you can also ask questions about local (and not so local) treatment options online, before the next in-person meeting. You should be able to sign up for the group by e-mailing dc-edfs-owner@yahoogroups.com. Post here if that doesn't work, and I'll try to help. 

Persist (formerly MDmama; had to change my account due to login issues)
hangry

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Reply with quote  #18 
Hope I get to meet you! Would love to hear your story and how your daughter fared after her stay. 

hangry

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Reply with quote  #19 
Update:
Hello all and thank you so much for all your kindness.
Daughter has been diagnosed with RAN and OCD. She's been doing well in her residential placement and I was able to get back to China, complete packing up, and wrap up my life there.
Doctor is now recommending starting a low dose of Prozac for the OCD. What do you all think about meds? 
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