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

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Crafty_Badger
hi everyone, 

I'm new to this club - the club no one wants to belong to - we are at the very start of this journey into the unknown.

Gorgeous 17yo daughter started to lose a bit of weight last year, I thought quite sensibly, since Easter has been gradually, oh so gradually, becoming more and more withdrawn and secretive about eating. After finishing her GCSEs in June she was out almost all the time 'eating' with her friends. Over the summer break it became much much clearer what was actually going on. She was hardly eating, had lost a LOT of weight and was virtually never eating with the family. Also cutting and not sleeping.

Long story short. Shortly after starting back at school she ended up in A and E following a collapse at school when she told a friend she had tried to kill herself the night before. The mental health team at the hospital said that she had anxiety and depression and they were fairly sure at she did not have an ED, but that it was a symptom of the anxiety. This has fast tracked us into the local CAMHS and now into the eating disorders team.

She's hardly eating anything and is purging most of what she does eat. We've had our initial ED assessment and they are just in the process of working out which team are best placed to help her/us. 

My instinct is that she has a form of ARFID rather than anorexia or bulimia. She's always been fussy and her eating seems to be more about anxiety than anything else. She eats entirely in secret at the moment, except for the very occasional small snack. The other morning I found the kitchen bin full of wrappers and packets that she'd eaten during the night.

I'm really at a loss as to what to do at the moment and she is, at best, passively hostile, she will not talk to us, unless supported by a friend, and then only when she decides to. She's dropping down the school attendance and might need to drop out altogether. 

I know now that the standard advice is for me to take control of her eating, but I just can't see it working as it will raise her anxiety and will make it almost impossible for her to eat anything.

Feeling so lost and sad for my beautiful girl.
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Enn
I have moved this thread to the main forum to receive more traffic.
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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Enn
Welcome and so sorry you needed to find us!
A few things I see here. 
Does she have a diagnosis?
The best way forward is to up supervision of all eating. You say she purged as well, so you need eyes on her all the time and making purging and bingeing difficult.
that means bathroom supervision. You will need to control what and when she eats.
Frequent meals will not allow her to feel so hungry that she binges.
i know it sounds counterintuitive but the only way to get less anxiety is to hit it hard. There may be short term increase on anxiety and hopefully with support and meds etc from the team the anxiety gets less. 
There is usually a worsening  of symptoms when we tackle it then it gets better. Don’t be afraid. 
My d too had a lot of anxiety that I thought was all it was, but she has AN too. There can be co morbid mental health issues that may require addressing as well.
That hardest part is making a decision to take control and although it will be hard, it is the first step. 
She cannot do this without you and you are the best one for the job.
you are not alone. Let us know how we can help. There is always someone who has been where you are. 
Sending a hug. 🤗 
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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Kidster

Welcome Badger. There are a lot of people on here who will give you useful advice. I have a 15 yo D with restrictive AN. Official diagnosis in June, but was gradually going down hill from March time. Definitely got worse after diagnosis - CAMHS’s fault apparently for  labelling D - but as said above often gets worse after diagnosis and when you intervene. Taking control is awful and took us weeks to actually  implement but there is no other option. The most useful thing CAMHS did was to involve outreach support workers who visited at mealtimes. We are now in a different phase and trying to figure out how to move forward as still not WR and back at school. I do feel that dealing with an ED is like being in a maze and trying to find the way out - lots of wrong turns and blind ends but you and your family just have to figure it out.  It’s hard but we will all come out of this wiser and stronger (well that’s what I tell myself daily!)
Big hug and good luck

 

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MKR
Welcome Crafty_Badger,

You are in a place where everyone "speaks your language". I, too was in denial thinking so what if my daughter missed 3 periods and got more fit. Then I looked for causes and that was a waste of time, action is more important. 

Your daughter's anxiety may be a trigger for ED, but right now fighting the ED behaviour is vital. Removing triggers alone will not stop the ED behaviour until the weight comes back. The brain is starved and not fully functioning.

Dealing with the ED went against all my parenting,  turned me into a nagging, controlling mum, policing toilet visits, timing bathroom breaks. All the wonderful trust we had pre-ED was lost, I was devastated.  But miraculously with every pound gained, my daughter's behaviour improved, amazing. And it gives you the opportunity to show love in those calm moments, making it more and more attractive for her to listen to you rather than to the ED.

We were lucky with a very supportive school. Once alerted, the teachers kept an eye on her toilet breaks, gym visits and any lunchtime running. She complied when caught.

One more thing: I always talked to my daughter as one of our team, not the opponent. Like, "We need to reach this week's weight target. Please help us get there, so we can do xyz on the weekend." We treated the ED as the outsider and daughter as part of the family. Sounds obvious, right? But in those heated moments oh dear, I was called any name under the sun.

You can do it! Make the most of the time while she is living with you and still at school. 

All the best and feel free to ask more questions. These mums here are awesome, they helped me out in previous years (6m WR and periods back, yay).

❤❤

Z






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
Welcome to the forum, sorry that you have had to find your way here. It sounds like your D is very unwell. It also sounds like the diagnosis is unclear but your D's symptoms do sound extremely concerning. It is essential that she start eating again and that eating is supervised. It is common for ED to thrive in secrecy and behind closed doors. It is expected that she will resist this, for all sorts of reasons. Your profile indicates you are in the UK which is likely to limit your treatment choices and options, worse given her age you will have to deal with the difficulties of the approaching 18th birthday. She needs to be in as good a position as possible at that time, so hit this as hard as you can with everything you have got. This may well mean - stopping school, taking time off work, rearranging your entire life around this to get things working again. Please ask lots of questions and read as widely as possible. 
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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MKR
Hi Crafty_Badger,

Just wondering how it's going.  I suspect you might be in the thick of it trying to have meals as a family.  First few days are the hardest!

Please feel free to vent or ask for tips. We've nearly all been through scenes unimaginable before. 

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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Crafty_Badger
Thanks for the follow up, I appreciate that. 

Yes, we are in the thick of it, but things have moved on a bit. She ended up in A&E again, after collapsing at church. I had her to myself in the car on the way home, so decided to make the most of it and told her that whatever we were doing right now was not working and that from the following day I would be taking control of what she ate. I would give her food and she would eat it. She cried a bit and said that she would hate me, but I told her that I didn't care if she hated me forever, I would help her fight this thing. 

The following two days were really good, she seemed relieved in a way, we even went food shopping to make sure we have stuff that she likes. While in the shop she said that perhaps it'd be better if she just didn't have access to food, but that I control it all! She told me more about the bingeing and purging and how it makes her feel.

Then she went to school for the day and it all went downhill from there. She took a (small, non life threatening) overdose on the following night and we were in A&E again the next day. The doctors almost kept her in, but in the end her mood lifted a bit and we could go home. 

Since then she has purged more and I've decided that we must concentrate on stopping the purging as it could have long term health consequences. So we've locked up all the easily binged food, she isn't allowed to flush until I've looked, and if she binges again in the night, I will be sleeping downstairs to prevent her (we have one open plan room downstairs).

She has left school now and will be seen by a CAMHS therapist and ED team. I know CAMHS is patchy in some areas, but it's good in ours. 

Stopping the purging coping mechanism has obviously increased the cutting and her bedsheet was covered in blood today. However, of the two, I think the cutting is less damaging in the long run. A devastating 'choice' to have to make, but that's what we've decided to do.

It's up and down each day, but I feel we've made some good decisions and got some kind of a plan that will 'hold' her steady until the therapy can start to take effect. She's much better out of school, it was so stressful for her. 

At the moment she is still allowed to go out and see friends. She eats when she's with them and it lifts her mood. 

That's where we are right now. I feel much less lost than I did when I first posted, but it's devastating to have to do this for my lovely girl. Heartbreaking. 
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Torie
Good for you to tackle this so strongly - it is such a difficult journey.

It's great that she is still interested in socializing.  And kudos to you for your look-before-flush policy.  You probably already know this, but it helps a little if they have a good mix of carbs, proteins, and fats with each meal and snack.  Apparently that reduces the urge to binge a little.  

I really, really hated the cutting.  Ugh ugh ugh.  I assume you have tried to remove all razors, blades, knives, etc. (and meds, poisons, cleaners, ropes, etc.) - would you like help brainstorming ways to figure out where the loopholes are?

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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MKR
Heartbreaking! And devastating choices.  But you have got lots of bases covered and I admire your vigilance. You have some very good strategies. 

Your daughter said what I observed: that shopping for food is overwhelming. Great that she is aware! I am so used to denials.

I had to keep our supermarket visits short and stick to the list because with every minute my daughter was more hectic.  She swapped items in the trolley for "healthier" ones, swapped caps on milk.  This didn't happen when we shopped for shoes or clothes. 

You probably know that dips in energy make it worse, so it's important to keep blood sugar from dropping, ie 3-hour between meals/ snacks is best. 

Wishing you lots of strength, 




Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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ValentinaGermania
I think you did really great by telling her that in the car, that was what ED needed to hear.
And I also think it is most important to concentrate on stopping to purge at the moment but please check her room if you can find out what she uses to cut and take all sharp things away (do not forget the compasses). It helps against self harm to make the flat safe. It is like having a toddler there again, you would lock away dangerous things too.

Here a punching bag helped my d to control self harm and to hit the bag and not hurt herself instaed. Maybe worth a try?
Keep feeding. There is light at the end of the tunnel.
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Crafty_Badger
Thank you all for your encouragement. To be honest, I was feeling a bit nervous to post anything further, because I thought I might get shouted down for not doing enough, so thanks for following up, it really means a lot.

On the cutting front, every hospital admission has advised me to get rid of the blades in her room. So far, I haven't done this because she is not getting any treatment yet, and my feeling, and hers is, if we take away the very small blades that she is using at the moment, she may well look for something worse to do. Indeed, the purging has been a more recent development and is much worse that the superficial cuts she can manage with her little tiny blades.

i have given her some disinfectant, plaster and cream, and asked her to let me see if she ever suspects that something is getting infected. I check her bed regularly and change the sheet if it gets lots of blood on it, so she knows that I know.

we have locked away all other sharp things and all drugs/medicines. 

At the moment, she has nowhere to go with her overwhelming emotions, so, until the therapy kicks in and she can start to deal with her emotions in more positive ways, I am satisfied that this is the right decision for us. And when I say satisfied I mean terrified and heartbroken but resigned to having to make such hideous awful distinctions between horrific choices.

we have suggested alternative strategies, which she says she has tried, but, for her, they 'don't work', so, for now, we are leaving it like this and hoping that with the therapy and support from outside the family, she will be able to redirect coping strategies to other, safer, methods.

thank you ❤️
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deenl

To be honest, I was feeling a bit nervous to post anything further, because I thought I might get shouted down for not doing enough, so thanks for following up, it really means a lot.


Personally, I think that we all have a process to go through while we discover what works for our particular kid and what doesn't, which parts of our parenting style need to change for the new circumstances and which don't. That is especially true in the early stages. Unfortunately, there is not a foolproof treatment plan to follow that will work for everyone. Trial and error in finding the right path for you and your circumstances, together with listening to your own parental intuition (after all nobody knows your daughter as good as you) were vital elements in our own slightly unconventional path to a better situation. I used to consider all the posts to my questions to be a smorgasbord of ideas and I would choose the ones I thought would work best. If they worked, great, if not, I would go back and look at the ideas again sometimes going for something different and sometimes giving a little twist to a technique that I had used before.

For the self-harm, I was going to suggest the some substitutions like an elastic band, ice cubes or a red pen but you have obviously done your own research and decided what is best for this moment in time.

We are here to support you and empower you in whichever choices you make.

Warm wishes,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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Torie
Such very hard choices we are forced to make.  I found it really helped to sleep with my d during the early days.  Not sure if that is something you might like to consider. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Crafty_Badger
Torie wrote:
Such very hard choices we are forced to make.  I found it really helped to sleep with my d during the early days.  Not sure if that is something you might like to consider. xx

-Torie


thanks Torie, I have that in my kit bag, to pull out if things get worse. Her primary issue is anxiety and depression and she does not find me or her Dad a calming presence at the moment, so to tell her that I'll be sleeping in her room would send her anxiety shooting up, which would increase her need to self harm. We need to address the underlying issues and not just stop the behaviours, because the urge to self harm will still be there and will come out somehow. 

For now, she is eating, she is calm and she is cooperating. So I don't feel I need to just now, although, obviously, I go to bed each night hoping and praying that she'll be ok during the night. I'm not relaxed about it!

We're seeing the psychiatrist next week and should get a care plan then. Weekends are easier because she sees her friends and that lifts her mood. 

What a rotten thing this all is. Stealing away the most lovely time - I absolutely loved this late teen stage with my older son, it was a time of growing together and just starting to enjoy him as a young adult. I miss my girl so much, I see glimpses of her occasionally but I miss the potentially lovely time we should be having together. We will never get this back and soon she will be gone from home and this bloody illness has stolen these precious couple of years from us. I HATE it.
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ValentinaGermania

Her primary issue is anxiety and depression and she does not find me or her Dad a calming presence at the moment, so to tell her that I'll be sleeping in her room would send her anxiety shooting up, which would increase her need to self harm. We need to address the underlying issues and not just stop the behaviours, because the urge to self harm will still be there and will come out somehow. 


I do not know what you expect from that therapist and what underlying issues you are looking for but please know that anxiety and depression are totally normal symptoms of AN and that a lot of patients do harm themselves during refeeding if they have the chance to do that.

In many cases here it was important to just do exactly that, stop the behaviours. There were no underlying issues. It was all ED.
It might increase her need to self harm but if it is not possible to do it any more she cannot do it and then she must learn to cope with that and stand that feelings. You will not be able to stop that without challenging that. It is like a drug addiction. You will need to take away the heroin...

As you probably have seen, it was not you that has been shot here immidiately but me...
I still think it is no good idea to let a suicidal child have access to any blades, sorry.
Keep feeding. There is light at the end of the tunnel.
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deenl
Dear Crafty Badger,

Tina is right, it is indeed the case that, for many people, self harm is simply a symptom of malnutrition i.e. the eating disorder. There is some study done linking increases in self harm with a lack of glucose. That was true in the case of my son. All self harm disappeared as he got enough food , day in, day out. As with all things human, it is not the case for everyone; we are all so unique.

Although self harm is linked to an increase in suicidal ideation, it can be a stand alone issue. You seem to have done lots of thinking and research into the self harm and you know your daughter best so I am assuming that you have considered this. I am also assuming that your daughter was assessed for suicidal thoughts during the ED assessment and was found not to be in danger.

This can change so keep an eye out for the ususal warning signs and mention them to your team. (if in doubt, better safe than sorry and a trip to the ER for assessment would be best) The signs can be quite passive such as a wish not to wake up in the morning, talking about being a burden to others or more distressing such as talking about suicide, feeling aggitated, without hope and in severe emotional pain, looking for ways to act. An extreme change in mood can also be a warning sign, including from being down to appearing better. My son showed this sign once he had decided to die by suicide, he was less agitated once he had made the decision and wanted to leave us with good memories. Like the self harm there was no underlying issue except malnutrition. It was one of the first symptoms to ease once he was being fed well and never reoccurred.

You must be spending much of your day reading, researching and thinking about what fits best with your situation. I think we are all the same and knowledge is power. And empowered parents are a force to be reckoned with.

Hang in there,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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Foodsupport_AUS
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Her primary issue is anxiety and depression and she does not find me or her Dad a calming presence at the moment, so to tell her that I'll be sleeping in her room would send her anxiety shooting up, which would increase her need to self harm. We need to address the underlying issues and not just stop the behaviours, because the urge to self harm will still be there and will come out somehow. 


I understand the fear of increasing the risk of both self harm and the risk of potentially making things worse rather than better. My D spent several years in a terrible state with anxiety, depression, self harm and suicidality. At the same time most of this was secondary to the ED. She did find re-feeding very distressing and all of these features got worse in the process, however at the same time it was the way to keep her alive. I found that my D was much worse when left alone with her thoughts, this meant keeping her close to hand, and encouraging all sorts of activities. She always said she did not want to do anything, however she brooded a lot when left alone without activities. 

What do you imagine are the underlying issues? Sometimes these things are not anywhere near as important as addressing the behaviours and making sure there is full nutrition present. Although some kids have trauma, sexual identity issues, interpersonal issues to deal with, much of this can be addressed at the same time and on its own does not seem to help many of the other symptoms which are exacerbated by the malnutrition. 
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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