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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joanne34
Hi, our daughter has been gradually gaining weight over 6 months.  At the weekend it really felt we were getting somewhere.  On the surface she seemed happy and calm although I know this wouldn't have been how she was really feeling.  However on Monday her mood plummeted and she was very up and down but calmed towards the end of the day and did eat her meals.

Today things have escalated.  I think there were two triggers.  1.  She had a shower and is clearly noticing the change in her body.  There are definite changes - she isn't as skeletal and her breast tissue is returning.  She was hysterical in the shower and was caught today not eating part of her snack.  We calmly pulled her up on it and when she tried the same thing in the afternoon returned it to her and asked her calmly to finish it.   These factors and I guess 'feeling trapped/lack of control' has led to her nervous tics escalating, trying to hit/scratch herself, thrashing around on the sofa, hyperventilating etc for at least a good hour. 

Does  this happen? Do any of you have experience of these sudden spikes in agitation/anxiety/hysteria which seem to come from nowhere when you are on the recovery/re-feeding pathway.

It's just so upsetting and heart breaking seeing her like this and so hard to deal with
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teecee

Hello
Sadly yes I have to say this is normal. I was frightened when this happened as no one had told me about extinction burst .... the primal screaming really knocked me for six band I know others have seen physical violence. We had to restrain her to prevent her from hurting herself. 

It is a tough thing we have to endure - their pain - but we must try to remain as calm and assertive as possible (not easy I know). I remember it being so emotionally draining I my lovely D being exhausted for 2 days after an episode, not to say massively embarrassed and beating herself up about it. 

Keep pushing through though as now is not the time to back down. ED is angry and wants you to back down and go away. 

Virual hugs. Xxx

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joanne34
Thanks - it really does feel like last ditch attempts to stop us following this pathway.  She is calm now and eating her tea.  Hopefully tomorrow will be a better day.
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Enn
You know, i was thinking about this earlier. There may be times you may be able to explain and understand what is going on but a lot of time you may not be able to. As long as YOU have your eye on the prize and that is full nutrition every day, you are truly moving forward. It is not linear and cumulative unfortunately, it just is day by day doing what you need to to get to the next day. Hard so hard!
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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teecee
Tomorrow is always another day 😊💕
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joanne34
It certainly is!❤👍
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joanne34
Thank you so much for the reassurance yesterday.  Today is a completely different story, much happier and calmer.   Functioning more 'normally' etc.    I think she needed to have the meltdown to vent her frustration/anxiety/agitation etc of not being in control and seeing the changes in her body.   At least if it happens again we know that things 'may' calm down the next day.  Also, there isn't any residual anger/issue with us standing firm yesterday.....it's almost as if it never happened.  It's all very strange but good that it's as if she has just moved on after that episode.  Thank you everyone.  This forum is a lifeline at the moment for us!
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teecee

What a coincidence...I was just thinking about you and hoping it was going ok today. I’m so happy that you have calm today 😊

Imagine your lovely D is being held hostage by ED....she can’t speak directly to you as to do so would risk punishment from the bully. Inside she is hugely grateful for you standing up to the bully and fighting for her freedom by being calm and confident and assertive 😊 you did great! I hope that makes sense!! Xxx

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Scaredmom2019
@joanne34

The BEST advice I ever received was to not get too down on hard days and also not too excited on good days. It's a constant moving target and I had to learn to remain neutral even when I was devastated or thrilled. 
I had to try hard not to do the emotions with her. Not easy to do, but it's a little mantra I tell myself many times a day...even when it's a great day....stay neutral. Things change from good to bad and bad to good by the day. It helped me know that even IF there was a bad day...I could stay calm because the next day COULD be good. 
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joanne34
Thank you.   No sooner had I posted the last message when she came downstairs looking distant/shut down.  No idea what triggered it.  We've managed to keep her calm and she's had her snack. Unfortunately when she is feeling like that she can't communicate with us and we just have to ride it out.   You are right, the road to recovery is such an up and down process and tough to deal with.
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teecee

You may find days follow a pattern....functioning better in the morning than afternoon. We had good starts today the week but could guarantee that Thursday evening onwards was a mare with negative moods and being completely exhausted and down. 

 

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Aefw001
This illness is so challenging and heart-breaking.  As others have said, staying neutral (as much as possible) does feel like the only way we can survive this as caregivers.  Regarding finding patterns in the triggers, I think this can be helpful--if there is a pattern to be found! If only so you can brace yourself for the onslaught. One thing we know raises our daughter's anxiety level every week is the visit to her pediatrician's office where she has her vitals taken (including weight). Even though she's blind weighed, she knows she's gaining weight and will usually start emotionally reacting as soon as we get in the car from the visit and will stay at a high anxiety/outburst/trying to refuse food for that day and the following 1-2 days depending on the week.
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MKR
Hi, similar here.

It feels like we are going backwards sometimes. Phase 2 is not so straightforward.  We give some freedom, but soon end up paying for it. Dialling down (and then back up) is so hard, harder than just having strict rules in place.

We allowed 1 hour exercise every morning during lockdown. Thankfully, the 1 hour has become shorter every day, even 35 minutes.

But last night there was an hour's stand-off and tears over finishing her meal, which has sent her packing to her dad's...

(When will this be over? 🙁).
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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joanne34
It's such a shame isn't it.  I've felt like she was just on the edge of holding it together today and at any point she'd topple over the edge into melt down territory again. It's daunting knowing that even when weight restored the journey to recovery is far from over.  I hope things improve for your daughter MKR xx
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MKR
Thank you @joanne34!

Let's hope these were just bumps on the way 😀.

joanne34 wrote:
... just on the edge of holding it together today and at any point she'd topple over the edge into melt down territory again.


You said it right!  She is back this morning, sulkingly had her snack. I am back to walking on eggshells. It may be a good idea to mark this on the calendar, hoping to pick up a pattern and also hoping that these events are few and far between.

Great that you can keep your cool! 😎
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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evamusby_UK
I wonder if some of you may be heartened by this little video created by one of the parents Kevin Dunn here:
The Moving Target model.
https://www.feast-ed.org/the-moving-target-model/

I have sometimes thought of the journey to recovery as a spiral staircase. You think you're going backwards, back to where you were, but you're actually moving upwards.

But gosh we really need others to tell us we're not stuck in an everlasting loop of things getting worse after they get better.
Much love to you all in this common pattern.
Eva Musby, mother, author, produces lots of resources for parents at https://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
[comp]
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MKR
Thank you @evamusby_UK!  The spiral analogy makes sense. The trail to full recovery seems ever longer and slower - compared to the first immediate action steps.  And relapses seem so sudden, too.

The spiral seems to illustrate my feeling of dejavu (bringing some PTSD, of course) every time we get a tearful tantrum.

The spiral and the walking up the sand dune by @Torie are both good illustrations.

Keep feeding 😀
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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joanne34
It's definitely not a linear improvement and today we have hit another pothole in the road.   She keeps resolutely telling us tonight she doesn't want to get better and to stop all of this.  Tonight she keeps slapping herself around the face and calling herself a fat git, even though we tell her that isn't true at all and ask her to stop.  She'll stop and then it all starts again.   Today i think one trigger was her delayed afternoon snack and milk supplement.   We are both working from home and various things meant the time had flown by in the afternoon.  I realised then we'd missed it, our daughter obviously didn't remind us. I think she thought she'd got away with not having it so when she saw I'd remembered it tipped her over the edge and she has been highly agitated and upset all night.   She is also now appearing distant/emotionally cut off when speaking to us even though we are continuing to be affectionate.   I'm not going to let her push me away.
Tomorrow she has an appointment with CAMHs which again will possibly trigger agitation.  It is so sad to see her looking so mentally unwell,  Tonight as well is a return to her wailing in her bed at night instead of just dropping off to sleep like she used to.  I agree MKR that when things seem to get worse again, it reminds you of how bad it was and I feel like I'm physically being dragged back there.  At the moment there is no light at the end of the tunnel and I feel so sorry for my younger son who is also having to deal with his sister going through this.   It really is just awful, upsetting and just soul destroying.
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teecee

There is no logic to this vile illness. To her recovery will seem unachievable and too painful to get to. The anxiety she is feeling must be so high 🙁
ED loves rules...timings for meals etc. If that rule is broken the bully in her head torments her. ED is angry and upset ... your D needs you to fight for her and you are certainly doing that. 

Try to just stay in the moment as worrying about what may happen tomorrow zaps today’s strength. 

Some need to sleep with their kids to comfort during the night as this is the worst time. My H and I took it in turn to massage our Ds head and actuallly those times were ironically some of the closest times we had in terms of reminiscing about happy childhood memories. She recalls those and not the anguish she went through and suicidal thoughts. 

Remember that everything changes...even the horrid , bad times. Small cracks of light will begin to appear again. They will. Xx

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Torie
joanne34 wrote:
She keeps resolutely telling us tonight she doesn't want to get better.

I'm sure you already know this, but perhaps it will help someone to say:  It doesn't matter if she wants to get better or not.  You can drag her back to health regardless.

I will never forget how much it helped me when Hopefulmama patiently explained that to me.  And she was right!  ED most definitely did not want my d to get better, but my real d is so glad she did. 

Keep swimming. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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MKR
I agree about the massage - if your daughter can handle it (some kids are hypersensitive).

This is hard on siblings. I am sure you or your husband give him special time whenever you can. 
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Foodsupport_AUS
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It's definitely not a linear improvement and today we have hit another pothole in the road.   She keeps resolutely telling us tonight she doesn't want to get better and to stop all of this.  Tonight she keeps slapping herself around the face and calling herself a fat git, even though we tell her that isn't true at all and ask her to stop.  She'll stop and then it all starts again.


This is truly all so normal, and it so so sad to see. How you manage it is variable The thing is she is miserable. You know that she doesn't want to be miserable for ever (no one does) so no matter how resolutely she says it you know it is not true. So options are just accepting her statement without argument, letting her know that you have heard she is distressed and miserable, challenging her and asking does she really want to be this miserable for ever. You know your D best, sometimes different responses are needed on different days. I would also give up on arguing with her when she says she is fat. My D's psychiatrist suggested that when we take an opposite view to a statement coming out of anxiety we are often inadvertently reinforcing the anxiety by giving it validity. In her mind she is just as likely to think that you are just saying she is not fat to be nice. It helps rather to acknowledge that she is distressed, that she has the terrible feelings and remain neutral about the opinion. The same goes if she says tell me I am not fat. In the end it doesn't help. 
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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joanne34
Thank you.  We had our regular appointment at the ED clinic today.  As things have seemed at an impasse for months and because she is so low in terms of her mood and the 'hurting herself' and OCD type behaviours are on the increase it has been decided to try antidepressant (sertraline) to see if that helps.   I have held off on going ahead with this for months but now feel it may be an option if it does help.   At least with lock down we can monitor her closely in case there are any side effects and she'll be starting initially with a small dose and will be building up.   If it doesn't work we just go back to the drawing board.   I thought this decision would result in a big meltdown at home but it didn't. However, I'm am bit worried about that although it could be that she is resigned to the fact we do need to give the antidepressants a try.  I agree with trying not to tell her she isn't how she feels from now on.  You are right, if I say I'm fat and someone says you aren't ....I don't feel like I agree with them and do feel like they are being nice.  Especially if my jeans are straining at the waist!!!    Anyway, onwards and hopefully upwards.  Thanks everyone xxx
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teecee
I had a positive experience with sertraline last year when I had carer burnout. It takes a few weeks to get feelings again (I was numb) and I had a couple of side effects that lasted a couple of weeks (intense thirst was one) but when that went I lifted out of the depression. It’s important to encourage her to practice self care even though she feels it’s not achieving anything. You could do little special things to try lift her....I bought my D a small bunch of flowers each week for her bedroom and told her she deserved to wake up to fresh flowers as she was special. That really resonated with her. 
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joanne34
That's a really nice idea xx
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