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

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Hi there,
Thank you for all of these posts, some days, reading them has been the only thing keeping me going. 
We are heading into week 7 of refeeding at home. It is a constant fight, every day, but our daughter is gaining. We play loud music, we talk, she cries, she yells, she runs away ... we go get her. We do whatever it takes to provide her with the nutrition she needs. I'm worried about what boundaries to set for behavior though. Last night she just cried and cried while taking bites of her dinner. We prompt her to take a bite, she says "I can't", we say "we know" and she takes a bit. It is awful. Crying while eating is not "normalizing" eating behavior, so we are just so lost. She screamed for a while and still does occasionally, but it's turned more to crying. I also feel like such a bully and worry about our future relationship. Are there times where I can back off? Meals have taken close to 2 hours, one piece of toast, 1 hour. 
A bit of history is that she was in the hospital for 4 weeks prior to coming home, due to gastro pain. She lost 13 pounds in hospital after losing about 5 in the 4 weeks leading to hospitalization (she contracted Influenza A over the holidays and then couldn't eat - prior to that she was suffering with IBS like stuff, and then I missed all the other signs indicating an ED ugh).  We were discharged on a weekend pass once all the testing was done and she was on motility meds. As the stomach pain retreated, she revealed the ED. We were essentially sent home from the hospital and told to "refeed" her by getting "it" in however we could. I spoon-fed for a while, we've done meal replacements. etc. etc. 
This morning, when I went to get her up, she tearfully told me she cut her leg with a razor. I responded with compassion, but also expressed worry. I was very sure to not get angry or judgemental. I iced it for a while, put on polysporin and offered tylenol (which she took). She is so ashamed and worried that we're mad at her, and I just keep offering reassurance. I've got a call into our FBT therapist, but because of this horrific pandemic, I'm not sure I'll reach her. I also plan to call a crisis line. 
I'm just wondering if anyone has any insight. I'm so scared she's going to do it again, but don't want to police her too too much, because I've read that's not the best tactic either. I've removed all sharps from the bathroom and her bedroom. She is not a sneaky child and she really values that we trust her, so it's so tough. 
I'm so scared I've done something to worsen the situation. I've lost my temper a few times (like 100 times over the past 7 weeks) at the ED, not modeling appropriate coping myself. My husband really struggles with patience and anger as well. We are really really trying but are exhausted, at home with no support, feeling completely isolated. 
Thank you so much for your time.

Welcome to the forum. 
You did the right thing for your d when she cut her leg with the razor. DO you feel she is truly self harming or was this an accident? 
I know when she did not have ED she was not sneaky, but ED changes them into people we could not have imagined, just be careful. You know her best.
Hide all the sharps and strings and ropes and meds and toxins in the home (cleaning supplies count). Watch for upper story windows if you feel she is suicidal. 
Have you asked her if she is suicidal? Don't be afraid to, she may wish you to ask.
Why do you feel that you have done something to worsen the situation? I am not sure if I have missed something in your post. 

Please ask all the questions you have. We all do wish to help.

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
This is really so hard to do, and you sound like you are managing amazingly well. Your D's distress at eating is normal but the fact that you are still pushing past that distress and she is eating is great. As time goes on and hopefully weight is going on it commonly subsides. The tears become less, the yelling less. It does take a long time. 
The self harm is another common thing that pops up, it can be another outlet for them dealing with those difficult feelings. It sounds like you have done the right thing removing the most obvious things. Self harm can just be a way of managing distress, but it can also be a marker of more serious thoughts of self harm. Asking about suicide and dying can be important. Again this unfortunately is very common with ED. If this is an issue for her she may need more intensive mental health support. 

When my own D self harmed I found it very distressing to see. I worried about many things she didn't worry about. She did find it helpful for me to acknowledge this was due to her distress and ongoing need for support. We have a few threads about self harm  - this thread is in the hall of fame - https://www.aroundthedinnertable.org/post/self-harm-cutting-5116314?pid=1267480174
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.
This is a great post, I hope it helps you.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)

My own AN D was suicidal and attempted self harm so I understand just how distressing it is. You have been given sound advice already. I would just add that perhaps provide a ‘safe’ way to release the emotion with minimal harm for example an elastic band around the wrist to ping when she gets an urge. Others have used other methods...ice cubes I think I’ve seen before. 

Virtual hugs to you. 

We have had ongoing check-ins about suicide. She said she wants this to "end" but doesn't see a way to do it other than by not eating. Totally get ED is sneaky. I've worked on an ED floor, thesis is in ED. UGH!

She is not out of my sight, other than for an hour when we settle her to bed and then I go to bed. She is sleeping with me for the time being. I will check in with her tonight once she's settled, probably just head to bed with her. The phone is a huge issue, causes stress. 
Worried I've worsened things by being so forceful about nutrition. I've not let up on even one snack since coming home. Learning a more compassionate approach though. She constantly repeats that she's sick and can't help it. I agree, affirm but she has to have a bite. 

Team called today. Med assessment Wednesday in hosp, despite hotspot for COVID. Therapist appointment and then psychiatry on the 24th. I think she has PTSD in addition to ED. 

Thank you for the post Enn, it really helped. Thank you all for your support. 

You have not worsened things by being forceful about nutrition you have supported her against the illness. We have to be forceful in a calm, compassionate way (I make that sound so easy but I know it isn’t). 

Can you limit the use of the phone? My D came off social media for a while and that certainly helped. In fact she occasionally has periods where she recognises she needs a break and does that of her own accord. 

ED is extremely traumatic on the brain. My D is currently undergoing EMDR and has helped massively in her treatment however she was in strong recovery when she started this. Food is medicine first and foremost. 

Hoping today is a little easier than yesterday for you. X

Thank you. My D removed instagram and snapchat the day she self-harmed, so she was obviously distressed/overwhelmed about it. We do limit phone but find it's her only lifeline at this point. I hope today is a little easier today too, thank you. I just need to stay calm, working on my self.  
I hope you all have a good day.