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

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Blue
My AN D17 is her final year of high school, having struggled through 2yrs of recovery to date.  With a lot of missed classes along the way, she has pushed through OK with sheer determination.  Currently in the final year, we are working with the school to understand how to best support her eg getting extra time during exams.  However, her anxiety to do well, with current stress of recovery (we think she is in extinction burst stage as approaching WR), is bringing us back to early days of re-feeding, where some days are complete shut-downs, with only half meals completed. 

Has anyone had any success continuing school during recovery? What supports were effective with that? Should we be looking at winding down the course load to reduce the stress?

If the current 'bad days' are extinction burst, how long is this expected to last?  Should we push through with a view that the stress will settle soon? 

We are also trying medication for the anxiety, but getting complete refusal/ terrified response.  Any tips to help with that?

Thank you,
blue
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Torie
Hi Blue, My d was in high school during and after refeeding.  My priority was the refeeding.  As your d is in her final year before (maybe) attending university, I think it is super important to push through these final pounds.  Whether she also attends school is a much less important question.

How can we help you get her wr as soon as possible?  xx

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

Hi, my D’s therapist does lots of work with her around good self-care and what this means with respect to eating and having enough energy for studying. Heavy emphasis on needing to fuel the brain. 

SSRI has been essential here to address anxiety and low mood. We did not experience panic about this as D was motivated to try although on occasion has refused in an ED way. 

You might find it useful to read through Eva Musby’s advice for schools at the link at bottom. School here found this helpful.

Reducing course-load to reduce stress sounds like a good idea. We dropped a subject. Regular contact between D and specific staff member has proved really helpful so that she has ally in school she can talk to and somewhere safe to go. School have been really flexible about arrangements for example with mock exams- doing them in staged way, at home or other location etc and bending over backwards to reduce stress eg working out study timetable with D. I have regular email contact with the staff member.

https://anorexiafamily.com/eating-disorder-policy-guidance-school/

sending a hug. X

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Foodsupport_AUS
My D was still ill when finishing her schooling. By the time we got to year 12 we were at 4 years going into our 5th year of ED. For my D it was clear that this was going to be a long slow road. When she first went back to school she did limited subjects. We also looked at her spreading subjects out so she did not have such a high course load, she did not do the maximum number of subjects. Many in Australia have managed to spread things out over several years but for my D this didn't work out so well. She needed to be busy to at least some degree to keep ED at bay, but not so busy her anxiety and perfectionism were too much of a barrier. 
We are in Victoria. There are limited options for special consideration here, but we did apply for her. Not sure it really made a difference.

D did get through and got some good marks, though not as high as she had been hoping for. She can reflect back now five years later and see that she was ineffective in her study because anxiety got in the way. The plan had always been for D to live at home the years after school, we are blessed to live in close proximity to a number of good institutions. Once her schooling was out of the way she relaxed a lot more and was able to focus much more on what she needed to do. She challenged herself to join all sorts of university clubs for the free foods, socialised a lot more and worked on what she wanted to do. She will graduate at the end of the year from her dream post grad course.
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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ValentinaGermania
My d was finishing school about 7-12 months after WR and about 5 months after brain recovery started (it takes some months to do all the exams here) and I woud have not done that earlier. It was a lot of stress and she lost 1 kg only due to learning. If your d is not WR up to now and brain recovery did not start, can you postpone those examx and she can do them next year when she is in better condition? I see a big risk for going downspiral again if she is doing them now...

I think if she had cancer (and AN is as serious) and was doing chemotherapy (and refeeding is as stressy for body and mind) nobody would expect her to do any exams at the same time...
Keep feeding. There is light at the end of the tunnel.
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Enn
You know Blue, 
I would agree with  what everyone has said so far. 
1: WR asap and maybe school has to take a back seat. Taking a gap year is common and you would want her to be healthy in body and mind to go forward in her studies/life. One yr or even more is small in the big scheme of things.  Her anxiety is so high and maybe taking time to work on that first may make everything just a bit easier.
2: School: try to get any accommodation you need for your d. Less courses, tutelage, more time for assignments or tests/exams.
3: How can we help you get the weight on?
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)
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Blue
Thank you- you have given us the extra resolve to go forward and prioritise recovery 100% and we will just have to continue with that mindset.  Valentina- your chemo analogy is a powerful one.  Lara- Eva Musby's resource for schools is great, I wish I had found that one ages ago. 

We are keeping her home from school if any meals/ snacks incomplete (fully supervised), but this routine falls down in a heap on weekends as she seems to have exhausted herself (mentally and physically) and we end the week without the gains as lots of foods missed, with lying on the couch/ blanket on head.  She has maintained for almost a year, but the treatment team has asked for another few kilos to allow brain healing.

In the meantime, there is also high anxiety about the school, and determination to get perfect grades.  Seems like not achieving that, for example by going part time and graduating late, could spark 'giving up' entirely.  It's all or nothing thinking.  It feels like we are balancing a very fragile recovery that can tip either way.  Is this what extinction burst looks like?  Does this settle?

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ValentinaGermania
How can we help you to increase intake on a small footprint? Can you report what she eats and we can brainstorm ideas?
How can we help you get through the weekends? Here it helped to have the same routine with meals and snacks every day and not allow any sleep ins at the weekend.

"She has maintained for almost a year, but the treatment team has asked for another few kilos to allow brain healing."

Seems to be an expert team that knows what to do. Ask for more help there!

"In the meantime, there is also high anxiety about the school, and determination to get perfect grades.  Seems like not achieving that, for example by going part time and graduating late, could spark 'giving up' entirely.  It's all or nothing thinking.  It feels like we are balancing a very fragile recovery that can tip either way.  Is this what extinction burst looks like?  Does this settle?"

The perfectionism is something that increases with ED but is in most cases part of the pre-ED character.
It helped my d to see that she could do all the learning much more easy (and more "perfect") when brain recovery started and her brain worked good again. The brain needs food. The brain runs on fat and glucose and without that she uses it only partly and not perfect. Her teachers and we told her that she will get better grades with a recovered brain and that was the case. She finished school one year after WR and was best student of her year (although she was not in school at all for 4 months and only part time for the rest of the year until WR).

It settled about 2 years after WR and now she is still giving her best but not 110% any more. She is still perfectionistic but can also stand to get lower grades in University now. She even can stand to go to a test nearly unprepared 🙂.
Keep feeding. There is light at the end of the tunnel.
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Torie
Blue wrote:
In the meantime, there is also high anxiety about the school, and determination to get perfect grades.  Seems like not achieving that, for example by going part time and graduating late, could spark 'giving up' entirely.  It's all or nothing thinking.  It feels like we are balancing a very fragile recovery that can tip either way.  Is this what extinction burst looks like?  Does this settle?

This vile illness forces us into truly terrible choices.   The Torie household had that same education dilemma and - worse - concern about managing her suicidal ideation and not tipping her off the edge.  My bottom line:  She has to regain that weight asap.  Period.  She will not have the life she deserves if we do not get this weight back on.

To me, everything else had to be worked around that.  That was my guiding light.  Full nutrition every day, every meal.  

School was always a priority not just for my d but for me also.  But.  

We were very clear with D that school came second, no contest.  She knew that she needed to be able to feed herself for a good 6 months (full nutrition; no slipping whatsoever) in order to have the option to go away to university.  She knew that.  We weren't just telling her that - we meant it, and they usually have a pretty good sense for that.

Your d cannot choose full nutrition.  She, just. can't.  She needs you to choose that for her and enforce that every day.  She is not strong enough to stand up to AN right now - it is one tough beast.  She needs you to make it so that she has no choice but to finish that meal today tomorrow every day.  That will eventually grind down the AN monster, and at the same time it will strengthen your d. 

You ask if this is extinction burst.  I don't know.  Things may get worse before they get better - I say that not to scare you but to warn you.  Things might get really terrible, but if you see things going pear-shaped with increased nutrition (and weight), you can bet that you are  on the right track.  

I got the really good advice (here) to try not to worry about tomorrow.  There is enough worry for today and no way to know what tomorrow will bring.  If you are lucky, things will get better without getting worse first.  I will keep my fingers crossed on that.  I have no idea what your path will look like; I only know that in order to live the full life she deserves, your d needs you to lay down the law and crush AN out of your household. xx

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