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Penny31

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Reply with quote  #1 
We're still waiting for my D to be assessed by a psychiatrist, but her ED therapist has talked to a psychiatrist colleague and has mooted the possibly that our D has Pervasive Refusal Syndrome. Her symptoms are very up and down, and on some days she appears almost to be her normal self, but on her bad days it's very bad:
  • She won't talk or make eye contact with me, or even let me touch her.
  • She hides all day under her duvet, mostly curled up in a foetal position, and covers her face with her hands, clothing or hair if I come near her.
  • She refuses to go to school or see her friends. Last time a friend tried to come round she locked herself in the bathroom. She always seemed to enjoy school before, and although quite shy she was a popular high-achiever.
  • Apart from going to a couple of ED therapy appointments and about four days (not consecutive ones) when she made it into school, she's refused to even leave the house for about 6 weeks.
  • She refuses to eat anything at all for days at a time. The longest period has been two weeks. Luckily she's not stopped drinking water.  
  • Attempts to get her to appointments generally result in her trying to barricade herself into the bathroom or her bedroom, for hours at a time, or to shut herself in the back yard (even when it's wet and dark outside). We've removed all locks, but she's strong, and we wouldn't be able to get to her without breaking doors down. Sometimes she screams for hours on end when she knows an appointment is imminent, sometimes her protest is silent. She self-harms on these occasions, sometimes with a fair bit of blood loss.
As I said, it's up and down, and when she has a good day it's like she's a completely different person. But whatever is going on with her, it doesn't look like 'normal' anorexia. We caught the ED very early and she was given a diagnosis of AN within weeks of starting to restrict (I can say this with some confidence as having had AN myself as a teenager I knew exactly what the warning signs were and when alarm bells should start ringing), which means she hasn't lost a huge amount of weight yet. So none of this behaviour can be put down to a large amount of weight loss. And unlike with 'normal' AN she's showing no desire whatsoever to exercise - she rarely leaves her bed.
Before you ask - she hasn't, as far as we know, suffered any traumatic incident that could have precipitated this.
Does anyone else have experience of this? It may not be PRS she has, but some of her symptoms definitely match the descriptions we've read of it. 

__________________
14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
deenl

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Reply with quote  #2 
Hey swash,

So sorry to hear how hard it is for you all.

I don't know anything about PRS but that was almost EXACTLY how my son behaved once the ED was out in the open. He was also suicidal so he was IP for a while and they were jabbering on about a diagnosis of autism spectrum or 'something else going on'. He hated all the staff on the unit, wouldn't make any form of contact, almost never spoke, hid behind his hair, wouldn't let anyone touch him, sat in howling ball on couch,(EDIT: we had self harm too) etc. These behaviours also applied to us.

I refused to believe diagnoses and kept telling them that I knew him before ED. They actually didn't know how to help him and he was deteriorating mentally, emotionally and refusing all food. They were so deperate and scared that the let him come home to us.

S was eating juuuusst enough at home not to keep losing weight and H and I were determined to make our home a safe environment for him. He was so traumatised by IP that our initial aim was to reduce all stress and to create a feeling of safety for him. So we continued with the eating just enough, we didn't push (in retrospect we kept this up for too long). We coached our other two sons to act normal around him. We read that some kids see neutral expressions as disapproval or anger so we kept body language and tone of voice very affectionate. We played board games, cards, went to the cinema, kept him occupied. We also measured his BP and pulse every two days and kept in constant touch with the pediatrician, it was that risky.

And every so gradually the depression and behaviours you describe lifted. Now, we still have ED but we are making very slow progress there too.

Looking back, I think that the Maudsley principles of taking away control of food issues reduces stress for very many kids and gives them space to get better. For our S, I think the Maudsley techniques increased his stress and made eating impossible. We literally could not get him to eat, or take Nutridrink, when tubed in hospital he pulled it out immediately. So our only choice was to sedate him 24/7 with tube and all medical risks of sedating a extremely low weight child indefinitely or take him home and try to figure out a path ourselves.

I do think some kids need an adapted form of Maudsley. So we took the parts we could apply and added to them as and when possible. Today, I prepare all his meals but we use his safe recipies, he stays out of the kitchen, we time his meals, I add high calorie oil etc where I can, he eats 3 meals, 3 snacks.

LSUYE didn't work, he had no life he wanted enough. Magic Plate sent him into orbit and he couldn't eat at all. Any pressure from us meant he didn't eat. Open weighing meant he ate to stay stable without gaining so we moved to closed weighing

I do not tell our story as any sort of advice. As you can imagine it was all very terrifying. But I do think that there is no one way to recover from an ED and I encourage you and your family to be flexible and adaptive and don't be afraid to ask your professional team to find a way that works with your daughter. Our original team kept saying 'you know your son best' and then ignoring everything we told them about him. But it's true and make sure your team works with the reality of your situation and not to a formula.

Wishing you all the best of courage and success,
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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Penny31

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Reply with quote  #3 
Thanks for your reply deenl, and sorry to hear all you've gone through with your son. Was he refusing to go to school/leave the house and see friends too? I think that's one of the reasons why they think it could be PRS in my D's case - that and the fact that she is so very resistant to even going to her therapist appointments (she's not been an IP - yet - so the appointments are just talking. Nothing too traumatising).
__________________
14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
deenl

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Reply with quote  #4 
Hi swash,

Quote:
Originally Posted by swash
Was he refusing to go to school

Yes, hasn't been to school since July 2015 and unlikely to go back in the near future.

Quote:
Originally Posted by swash
leave the house and see friends too?

In the bad old days; yes, absolutely. Even now he will only go to familiar places or on interesting outing with the whole family. It seems as though he needs safe environment or safe company. He will only see one friend and one granny with pleasure. A few other family members are bearable.

Quote:
Originally Posted by swash
the fact that she is so very resistant to even going to her therapist appointments (she's not been an IP - yet - so the appointments are just talking. Nothing too traumatising).

S has only had a couple of meetings with a psychiatrist. Would not communicate at all, in any way. So he is not in therapy at all. I'm the therapist trying to coach anxiety, psychoeducation, etc

He does see his pediatrician who is absolutely lovely and was key in getting him home but his stress builds up for about 4 days beforehand. He only goes because he know that if he doesn't do minimal medical checks we will call the ambulance/crisis team.

As part of the deal in coming home, he had to have an MRI. His case was so extreme that they thought there could be a very physical cause. First time took me for ever to get him into the car, he inched his way to waiting room, dragged himself into exam room and froze. Could not partake in the exam at all. Same the second time with a different doctor. Third time we arranged an ambulance so he wouldn't have to call on his courage to walk to mri room, we skipped the doc exam and even so he had a complete meltdown 90% into the mri.

He refuses to the point of not getting into the car to see any other professional, he refuses to go to a lovely creativity based day centre, he refuses any medication or therapy. My gut feel is that he is a sensitive kid who was on the more anxious side of normal. With this horrible illness his anxiety has just gone off the charts. I'm reading a lot about it and I truly can't see massive anxiety in his past, some issues for sure but absolutely nothing compared to where his levels are at now.

My take on the refusal is panic to the point of not being able to do anything.

But it's truly incredible how much better he is; still miles to go but we see him laughing, chatting to brothers, showing interest in the world around him, writing to Nana, playing with the rabbits. All from time, slow increase in food and a warm and nurturing environment.

I do worry about the path ahead but we have always found some way through in the past and I've no doubt we will in future challenges.

Keep asking questions, learning and trusting yourselves as parents,
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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
deenl

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Reply with quote  #5 
Swash, our son had  a difficult (unstimulating with hopeless teacher) school year but nothing more traumatic than that. At the very beginning he did run to an from school (5 mins) but other than that no exercise issues.

Cheers,
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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
deenl

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Posts: 882
Reply with quote  #6 
Just one other thing, swash.

Very many Ed institutions will  not diagnose any additional disorders for 6 months after WR. The processes of falling down the rabbit hole makes it almost impossible to distinguish between ED and other issues.

From what I saw in my son, the fall into ED was a complete psychiatric tornado; none of us knew which way was up and his brain did what it had to to survive with some feeling of sanity. I think the beginning the behaviours were very chaotic and obscure because his brain was working enough to know there was a big problem. They certainly looked totally mental from my point of view!

When he was truly starving and under nourished he was numbed. Now, he isn't ready yet to process what is going on but I just keep saying that I understand/expect this behaviour, it is part of the process, it is normal. This mantra is enough for him, for now. And it calms me too. ED makes all our kids behave oddly but the crazy is actually normal for this illness.

Keep going,

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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Penny31

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Posts: 156
Reply with quote  #7 
Thanks so much for your response. My D had some depression/anxiety issues pre-ED - what's not clear now is whether she has AN with extreme anxiety (especially concerning school), or whether it's more a case of PRS, which is, in any case, only a collection of symptoms rather than an actual condition. Part of me almost hopes she will get IP treatment, as I don't feel we're seeing the slightest bit of improvement at home. But I know she would be severely traumatised by the whole thing. It's so bl**dy hard! Even when I had AN I never missed school, and never had days when I ate nothing at all. Very little, yes, but never nothing. Whereas D just stops eating for days on end, and there's absolutely no persuading her to eat when she's like that. 
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14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
Torie

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Reply with quote  #8 
Hi Swash - It all sounds very perplexing, especially the bit about some days she is (relatively) fine. We've pretty much heard it all here at ATDT, but that's very unusual.

I guess I wouldn't worry so much about adding an additional diagnosis on top of AN as much as I'd be interested to know what types of adjustments are indicated for sufferers of x,y,z co-disorders. If she is PRS-ish, are there any techniques or treatments that might help? 

Another thing that seems to be linked to AN is ASD. I've wondered if we AN parents would benefit from a better understanding of dealing with ASD kids since our kids seem to have some of those tendencies. And OCD. And ...

Keep swimming. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Penny31

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Reply with quote  #9 
Quote:
Originally Posted by Torie
Hi Swash - It all sounds very perplexing, especially the bit about some days she is (relatively) fine. We've pretty much heard it all here at ATDT, but that's very unusual.



Yes, that's the bit that's really baffling the ED therapist (who's based at the Maudsley, so knows her stuff). On some days - mainly weekends when my D isn't anxious about school - she seems to eat normally, and interacts normally with the family. The only indications then that there's anything wrong is that she won't leave the house and is a bit weepy in the evenings. Last weekend she was up and baking and eating cookies. And then on other days it's full-on - refusing food for days at a time, uncommunicative, curled under her duvet...It's all so confusing. And when she was first diagnosed she said she liked school and wanted to go back. Now she won't go at all. There's obviously a huge amount of anxiety involved, but we don't know if there's anything more. ASD has been raised as a possibility, but I'd be surprised if my D has it. My sister, one of my sons, and my dad (probably, he's never been diagnosed) all have Aspergers, so we know what it tends to look like. I know girls manifest ASD differently to boys, but with my sister it's always been glaringly apparent that she isn't neurotypical. But who knows...

__________________
14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
Bottle

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Reply with quote  #10 
Hi Swash, 
I'm no expert, and as I understand it (I could well be out of date) Pervasive Refusal Syndrome isn't an "official" diagnosis or syndrome and so I have found that people recognise and understand it in various ways! It is a term that has been used by one team for my daughter, but not by another -it is definitely a term used by me!  The best way of describing Pervasive Refusal that I have heard is that is occurs most in very high achieving girls that are possibly but by no means obviously or definitely on the autistic spectrum.  They have incredible strategies to cope and even to their family seem to be managing life, but these strategies to cope/fit in/understand the world come at great personal cost and at some point (usually around puberty) they hit a wall, cannot cope, cannot understand the world and cannot keep going any more resulting in a catastrophic pervasive refusal. 
When my D2 was 9 she stopped walking overnight.  She didn't walk for a year (medically unexplained) and had psychology for 2 years. 2 weeks after stopping the psychology she cut her food to almost nothing and then stopped eating altogether.  She developed physical tics, vocal tics, became non verbal, laid down crying all day, had symptoms of psychosis, dissociated regularly, wrote and drew reams and reams of the most harrowing horror filled accounts of her head, was suicidal. She wouldn't engage in anything AT ALL apart from lying and crying or writing about it. Absolutely no distraction was possible at all.  At times she would look at me utterly terrified and be able to speak"who are you, where am I? I want to go home, please take me home, I want my mummy, where's my mummy?" We were at home and I am her mummy. My hearing is permanently damaged from the screaming-it sent me temporarily deaf at times (like when a bomb had gone off on a film/)   Because of the not walking episode she was considered to have Pervasive REfusal Syndrome, she had an ng placed, I was trained and we kept her at home in a 24 hour full on hospital environment with community nurses visiting. I had to take her to the toilet, wipe her, bath her.  She became a baby again.  It was complete withdrawal from life.  She was exclusively ng fed for 8 months and has built back up to full supervised nutrition over the last 18 months.   

So that is what pervasive refusal looked like for us.  We were extremely lucky not to have to hospitalise her at that time.  There were times when I was begging them to take her, but everyone felt that keeping her out of a hospital environment was top priority and would have the best outcome for her.  I sleptin her room against her door for 3 months then she slept with me and H for a further 3 months, we had to go to great lengths to keep her safe, it was awful. But we are in a better place at the moment. 

D2 had always been difficult to manage from day 1! She has always been quirky, off-the-scale bright, ruthlessly determined to not let other people tell her what to do, VERY fussy about clothes/comfort, extremely blinkered and stubborn in everything she does but enormously funny and vivacious.  Leaving the house at weekends or holidays has always been traumatic for her too.  She definitely was not a regular kid, but no way would you think she was obviously ASD.   Looking back now and having written down a very long catalogue of problems and issues we had with her over the years until she stopped walking it is OBVIOUS to us that she fits on the spectrum.  Everyone that has worked closely with her thinks it's obvious too. She herself got hold of a copy of "THE GIRL WITH THE CURLY HAIR" and saw so much in herself in Alis Rowe that it felt like a huge relief to her that there was a good reason why she didn't understand the world in the same way as other people.  
FBT has been impossible for her in the conventional sense, although it is the family that have given her the time, patience, love and care to enter tentative recovery so ha is family based treatment I guess! "Requiring" her to eat sent her into her "I will not teach anyone that they can demand things of me and I will do them" mode and we all know that there is no coming back from that.  She does not respond to consequences at all. She'd let me give her beloved cat away rather than climb down.  The treatment that has worked for her and the reason she started to eat again- is weekly sessions with a specialist ED nurse who did some initial CRT with her but has basically formed a brilliant relationship with her and come alongside her to walk with her on this journey.  Every step forward she has made has been at her own pace and come from her/the nurse together.    So she doesn't fit the norms at all.

I wonder if any of that extremely short version of a loooong story!! helps you understand if your D is PRS or maybe ASD?  If your sister is obviously not neurotypical then I don't think that precludes your D from being ASD-perhaps thinking about her history would be useful-certainly all fell into place for us.

Good luck, it is a draining journey but keep plodding on and I hope you get somewhere soon. 



__________________
Bottle
D2 RAN as part of Pervasive Refusal Syndrome with a history of not walking for a year and being non verbal for a short while too. Considered to be Aspergers by everyone that has worked with her and by us but still awaiting a diagnosis that'll help us access support services she needs.
D1 recovered RAN and D3 doing pretty well considering the mayhem around here!
Sotired

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Reply with quote  #11 
Just one tiny thing to add to bottles insightful post-remember that the rule with ASD is that if you know how one person acts with ASD,then you know how ONE person does.we too have ASD in the family ,but my nephews is very different from my sons and yet they both have the same diagnosis.
And girls can hide it well until puberty where the social rules change but they don't change along with them.the older I get,the more I understand that I myself am probably ASD but I don't present the way my son does.i love people and yet struggled to make friends when I was younger.actually,that's the same as him.i always said exactly what I thought.i don't read social cues very well but I can pick up on 'atmosphere ' and react accordingly.im funny and reasonably bright,but white lies took me a long time to learn.when I was growing up I was very confused and socially immature.i just faked it until I could deal.i looked up some sites with women with ASD and thought'hah-I've found my tribe!'. So maybe your d has that too and that's why things are so very hard?you could try some of the things you have learned having autism in the family or do a few courses(they are usually at night and more a seminar than anything) and see what fits.no harm in trying different things if they address things you need.
I know that one of my friends writes social stories for her son when they are doing something that will cause him stress.some people use picture charts of daily activities.
Sometimes it's finding strategies that work and it doesn't matter where they come from.
Hope this helps,

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Sotired42
Penny31

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Reply with quote  #12 
Quote:
Originally Posted by Bottle
Hi Swash, 


So that is what pervasive refusal looked like for us.  


Wow, that sounds horrendous Bottle. And a lot worse than what my D is going through, bad though that is. I don't understand what's going on with my D - it doesn't appear to be 'normal' AN - but perhaps a PRS diagnosis would be going too far.


__________________
14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
Bottle

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Reply with quote  #13 
What you are all going through is awful Swash-you are a brilliant carer and right to be thinking about other things coming into play.
- my own D1 developed RAN when D2 was learning to walk again-totally triggered by having her own troubles that she felt she couldn't burden me with and before she knew it she'd got really ill. Her really active illness was 8 months, and she appears to be doing really well 2 years on, but it was just as awful for her and for me as it has been with D2 even though technically D2 has many more things going on. It is ALWAYS horrendous, there isn't any point or truth in thinking some are worse than others. It boils down to learning to tolerate extreme distress in your child which nobody wants to have to do.
I hope you have even just one moment today when you can look at the sun and trees and feel ok. Xx

__________________
Bottle
D2 RAN as part of Pervasive Refusal Syndrome with a history of not walking for a year and being non verbal for a short while too. Considered to be Aspergers by everyone that has worked with her and by us but still awaiting a diagnosis that'll help us access support services she needs.
D1 recovered RAN and D3 doing pretty well considering the mayhem around here!
Torie

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Reply with quote  #14 
Quote:
Originally Posted by Bottle
It is ALWAYS horrendous, there isn't any point or truth in thinking some are worse than others.


I agree with that, in a sense. (An important one.) But I think it's also true that some kids are much more challenging than others. My d, for example, was relatively easy to refeed. (Let's not talk about the self-loathing or suicidal depression for the moment.) I think it's important that you and Swash, for example, realize that you face(d) an extraordinary challenge getting your kids to eat, even among a field of AN-kids. (So did your kids.) It's not that I did a better job of refeeding - it's that the challenge I faced was smaller. 

I guess Bottle and I are both saying, "Don't judge yourself." That's so important. When we're critical of ourselves, the only one to benefit is Ed. xx

-Torie

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

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Reply with quote  #15 
Definitely agree on the not judging yourself Torie -and the rest-but I guess my point is really, having had a child whose AN goes alongside a massive raft of other stuff and also having had a child who willed and sought help for their own recovery, I would never under estimate the impact either situation has on the child or the family. Or feel like I had less reason to be devastated by the latter because one situation might seem worse than the other. Does that make sense? I don't hold by "there's someone else worse off than you" line of thought. For everyone dealing with an eating disorder no matter the scale it's always awful and you are entitled to recognise that and not "compare" .
I think me and Torie are saying exactly the same thing probably just in a different way :0)

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Bottle
D2 RAN as part of Pervasive Refusal Syndrome with a history of not walking for a year and being non verbal for a short while too. Considered to be Aspergers by everyone that has worked with her and by us but still awaiting a diagnosis that'll help us access support services she needs.
D1 recovered RAN and D3 doing pretty well considering the mayhem around here!
Penny31

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Reply with quote  #16 
Thanks everyone. My D went into school today with no persuasion - although I think partly because ED is in full swing and she's realised that (for the moment at least) she can storm out of the house without breakfast and chuck away her packed lunch, which means nothing eaten all day. Sigh. There will, of course, come a point where we're going to have to stop her from going to school if she refuses breakfast, but at the moment her therapist seems to think that we need to get her back into the school environment asap. Her behaviour over the weekend has looked more like classic ED (and from a psychological point of view very severe ED, even though her actual weight loss hasn't been huge yet), and less like PRS. She hasn't been weepy, virtually catatonic or self-harming as she was before - now it's all anger and food throwing, and marching into the kitchen and trying to turn off the cooker every time I attempt to cook a meal. So much food has ended up being binned - I have to try really, really hard for it all not to make my blood boil. Maybe though this new mood will mean she finally talks to the therapist, even if it's just yelling at her. I live in hope. 
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14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
Penny31

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Reply with quote  #17 
Thanks Toothfairy, that is helpful, because unless things change I think IP may be the way to go. I can cope with the behaviour in the sense that I'm generally quite good at remaining outwardly calm, but it seems to have got so incredibly entrenched so very quickly that I can't see us being able to shift it. The therapist is great, but my D won't say a single word to her, and in any case we can't get her to most of her sessions - she's getting pretty adept at barricading herself into rooms for hours on end. I'm so glad I've got three other children to keep me relatively sane. One of my sons has Aspergers, and he's particularly lovely to be around at the moment simply because he lives in his own little world somewhat and isn't too affected by what's going on around him. 
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14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
Colleen

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Reply with quote  #18 
swash, when we started refeeding our d, she became extremely depressed--unable to get out of bed, unable to talk, suicidal.  As she gained weight and her body and mind had more nourishment, she became really angry (REALLY angry).  Unlike you, we didn't have good or normal days.  But I kind of view your d's behavior as being pretty typical for recovery.  If I were you, I'd enjoy the good days and keep doing so well on the bad days.  I predict that you'll see more and more of the good days with more time and nourishment.
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Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
hopefulmama

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Reply with quote  #19 
I remember when I first joined this forum thinking that the parents here were obsessed with how much my d was eating (or not eating) and how much she weighed.  She spent days at a time on the floor of her room wanting to die.  In fact, she all but withdrew from high school her junior and senior years, terminated relationships with all friends, etc.  She couldn't sleep at night, was self-harming and had panic attacks. I remember my h and I thinking there has to be more to it than just anorexia.  I felt that our story didn't match up with others on the forum whose kids were able to stay in school, etc.  We spent about a year fighting the ED, but also looking for other issues.

In the end, once she got back to HER historical weight range (which was terrible) a lot of the other symptoms started to go away.  It really was about eating (and not just eating but eating all foods including a lot of fats) and getting to HER body's set point.

I am concerned that your d is being allowed to fast for days at a time.  Even if her weight is not abnormally low, this is incredibly dangerous. I get that you can't get her to eat, but there have to be other options.  I know some have had luck getting their kids to the emergency services where either they will eat or they can be fed intravenously and stabilized until a more LT plan can be worked out. 




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Enjoying my 21 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
Torie

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Reply with quote  #20 
Quote:
Originally Posted by hopefulmama
I am concerned that your d is being allowed to fast for days at a time.  Even if her weight is not abnormally low, this is incredibly dangerous. I get that you can't get her to eat, but there have to be other options.  I know some have had luck getting their kids to the emergency services where either they will eat or they can be fed intravenously and stabilized until a more LT plan can be worked out. 


I have to say, that worries me, too. My d was a faster, and that took her downhill REALLY quickly. Every step she goes down is another step you will have to drag her back up, and the farther down she goes, the harder each step is.

Sorry, I'm sure you know that. If you could get her to eat, you would. I get that. But if she can't eat at home, she needs another way of getting the calories in. Maybe IV or NG tube is needed or maybe just knowing that's on the horizon will provide some motivation. 

So sorry it's so hard. With you in spirit. xx

-Torie

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Penny31

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Reply with quote  #21 
Quote:
Originally Posted by hopefulmama


I am concerned that your d is being allowed to fast for days at a time.  




She's 'allowed' to fast because our local CAMHS can't get their arses in gear, basically. The ED therapist at the Maudsley is tearing her hair out trying to get an urgent psychiatric assessment for my D, but 'urgent' for CAMHS round here means 2-3 weeks minimum. And we can't get my D to see the therapist at the moment without having to drag her kicking and screaming, and possibly breaking doors down (and believe me, we've tried). If this continues we may well have to go down the A&E route (which in itself won't be easy, and could mean she has to be Sectioned), and hope that kickstarts a process of ED ward admission. We'll see what the ED therapist at the Maudsley says tomorrow. 

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14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
admum

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Reply with quote  #22 
Good luck tomorrow. As a local parent I would urge you to ensure that you know where your d will be sent before you agree to sectioning. My friends case hit the media recently although not ED related there is a lack of appropriate Adolescent MH beds in uk. He spent 6 months in an inappropriate unit awaiting assessment. Only moved following intensive campaign on social media and TV. She is Lambeth based.
deenl

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Reply with quote  #23 
Best of luck swash

Thinking of you,
D

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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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Penny31

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Reply with quote  #24 
Still nothing from CAMHS, and meanwhile my D has eaten no more than the equivalent of a single meal's worth of food over the course of the past 6 days. 
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14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
hyacinth

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Reply with quote  #25 
This is crazy. Do Camhs know how little your d has eaten? Can you call them every single day with an update? Can the Maudsley not help? Can you badger your GP to write a letter to complain (they might not need to see your d to do this)? Obviously going to A&E would seem to be the best solution, although I know how hard it will be to get your d there.
I am so sorry they are putting you through such a stressful experience.
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