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Jeneldridge

I’m hoping some of you will have some words of wisdom regarding our current dilemma....

Our 14yo daughter has been in treatment for RAN since Jan 28 - 4 weeks of partial hospitalization, then 2 weeks inpatient. She’s made a lot of progress since before starting treatment, but not nearly enough. Her weight is stable-ish but she’s not gaining, and she’s still only eating about 30% of her reduced calorie meals - about 600 cals/day. (That may sound awful, but she was down to about 150 calls before treatment.)

Insurance wants us to move her to residential treatment. She *really* doesn’t want to go to residential, and just hearing it mentioned as an option motivated her to eat 50% of all meals yesterday. Our hope is that insurance will
give us another week to see how she does. 

In the event that she can’t stay where she is, we are considering two options: 

1) Move her to Veritas residential in Durham, NC (5 hrs drive away)

2) Bring her home and try Maudsley/FBT

Neither option is great.

Residential - My husband and I are very concerned about having her 5 hours away and out of state during this COVID craziness, plus visits are very restricted. Also she is very opposed to the idea, and I fear that moving her could set her back greatly. 

Bringing her home/FBT - I fear that I won’t be able to get enough nutrition in her, and she’ll backslide. I feel like she needs to be in a professional setting right  now until she has a stronger foundation of recovery. At that time I definitely want her home with us. 

Any thoughts? Advice? Questions we need to be asking? Factors we’re not taking into account?

Thank you! 

15yo D diagnosed with AN-R Jan 2020. Hospitalized since late January. Almost fully weight restored as of late May; ED voices remain very strong.
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Foodsupport_AUS
I understand your fears at this difficult time as regards location and access. That being said your D is getting sicker and sicker whilst she continues on such severe caloric restriction. She may have increased her intake over the last six weeks however she is still literally starving. My D was also eating similar amounts prior to admission however her first day in hospital an intake of 1200 calories was required - if not eaten or drunk she would have a NG tube inserted. She was discharged after three weeks on 2800 calories. These are the sorts of intake that would be required for recovery. For an expected gain of 500g to 1kg per week (1 -2 lb) . It is even probable that it would need to increase further. 

I am concerned that this has not happened yet after six weeks. So for me the question is how were things happening at home prior to admission? Do you think you will have the resources to feed her as needed. What back up plans are in place?
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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Jeneldridge
Thanks. I know she’s still not eating enough to restore weight. I’ve wondered about an NG tube myself and have asked every ED physician and expert I’ve encountered about that option. To date every single one has told me “she’s not at that point” since her bloodwork is normal and weight loss not significant enough. We live in Washington DC with access to excellent care, including Children’s Hospital, and they’ve all told me they wouldn’t recommend an NG tube at this point. 
15yo D diagnosed with AN-R Jan 2020. Hospitalized since late January. Almost fully weight restored as of late May; ED voices remain very strong.
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Torie
In normal times, I would vote for Veritas.  They have a good reputation, and the current team is not making the kind of progress we like to see.  As FoodSupport has said, one way or other, her intake needs to increase dramatically.  So in normal times, I would feel strongly that Veritas would be worth a try.

However, these are not normal times.  I don't feel able to offer advice about how to factor in the changes we are all facing now.  Would you be able to visit with her by Skype or similar? 

I will keep you and your d in my thoughts. xx

-Torie 
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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atdt31_US

I think I’d keep her home if you have confidence the part of the hospital in dc would be available if you need it. But Covid could change that availability — can you have a frank discussion with them and get their best advice on whether they will be able to help if weight loss or vitals get worse quickly at home?

i would just have a hard time with the distance during Covid — but I could actually argue it well the other way as well. She would be in a dedicated facility unlikely to be overrun by Covid patients or overflow due to Covid. If they are screening or disallowing visitors perhaps they can keep her insulted from the virus and at any rate, it is predicted she would do well with it health wise other than weight (unless she has other health conditions). 

Lots to consider. For sure.  I think I would want to talk to veritas about their covid plan to keep positives segregated, what their capabilities are to screen for lung issues and get her to proper treatment if that would be off-site, etc. 


I am sorry there are so many other things to consider right now. Hard enough when it is “just” the ED to worry about. 

Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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Torie
I am inclined to agree with you, sotiredofEDO.  We always have to balance risks (for example, will suicide risk increase if we require full nutrition? is one we had to think about) but the bottom line is always that somehow, some way, weight must increase at a good clip.  Veritas seems to be the best chance for that. 

Sucks to have to make these types of calculations.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Jeneldridge
Thanks to everyone for your thoughts. We have decided to try moving her to Veritas. The admissions process is underway. Fingers crossed we can get her there quickly.
15yo D diagnosed with AN-R Jan 2020. Hospitalized since late January. Almost fully weight restored as of late May; ED voices remain very strong.
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Torie
I will keep my fingers crossed, too, in the hope that the transition is as speedy and smooth as possible.  Please keep us posted. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Jeneldridge
Update - We drove our daughter to Durham last week and admitted her to Veritas on Tuesday.  They didn't waste any time getting calories in her - they inserted an NG tube after only 24 hours of observing her restricting. I'm happy to report she has gained 3 lbs in less than a week.  She has increased her food intake to about 50% completions which is good for her.  Her attitude is still pretty bad - she says things like as soon as she gets the tube out she's going to stop eating again.  But I keep reminding myself it's her ED talking, not her, and at least we're seeing progress for the first time since she started treatment.  They've stopped allowing visitors because of COVID, and I hate not knowing when we'll see her again, but I'm so relieved she's in a safe place getting good care.
15yo D diagnosed with AN-R Jan 2020. Hospitalized since late January. Almost fully weight restored as of late May; ED voices remain very strong.
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MKR
Hi @Jeneldridge,

Thank you for this update. What a week!

Yes, you are right it's ED talking and with more weight on, more normal thoughts will be back.

Your instincts were right about what your daughter needs. She must be in your thoughts every minute. Are you able to text her or speak to her, so your voice is there, too (not just the ED)?

All the best,
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Jeneldridge
Thanks @MKR

They have increased phone/text time and added Skype visiting time as well.  So we will still get to "visit" with her, thankfully.  
15yo D diagnosed with AN-R Jan 2020. Hospitalized since late January. Almost fully weight restored as of late May; ED voices remain very strong.
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Foodsupport_AUS
Wonderful to hear that things are finally moving in the right direction. It sounds like she is in the best place right now for her, hopefully that rate of gain will continue. 
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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Torie
So pleased to hear that the weight is going on at a good clip!  Thanks for letting us know that good news.  I'm sorry you will not be able to have in-person visits, but I'm sure that will help everyone there stay safe including your precious d.  Please keep us updated as you are able. xx

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