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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wilkie2
Hi I am new to this forum but have been reading it for a few months, the advice is so useful and it helps to know your not alone. My daughter is 13yr and recently was doing ok after a short stay in a medical ward, she increased her weight slightly and for a few weeks it went well now it's back how do you tackle this? Throwing food trying to skim off food , she is 25.4 kg and her bmi is 13 , please any helps or tips how you keep going and how do you support your child ? She in involved with camhs for 12 weeks and not yet received any 1:1 or fbt is this usual ? Any advice will be gratefully received
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Torie
Hi Wilkie, and welcome. So glad you found us, but of course so sorry you needed to.

At such a low BMI, your d will need a lot of meal support. Really, a lot. Are you able to be home with her and join her at school to supervise all meals and snacks? It's very unlikely that she will be able to manage a full meal without watchful support - even then, it will likely be a battle.

Have you read about LSUYE (Life Stops Until You Eat)? That means she can head off to school when she has finished her breakfast (all of it, which needs to be rather a lot), and she can go back to class after she finishes her lunch. Are you doing that? Do you think you would be able to do that?

Please feel free to ask all the questions you like. This is an awful illness, but we've all been there so we do get it. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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wilkie2
Hi Tori,
Thank you for your reply, I am off work at the min and have a couple more weeks off, she has breakfast but last couple of days tried to refuse then ripped food etc, she gained 100g this week and we was so deflated. There's no way I could supervise in school D would go crazy at that but I think she is finishing her pack lunch even though only small,

She is due to have a assessment for hospital admission but we really don't want her to be admitted , as she is just starting to settle in school and make friends etc, she enjoys her lessons but she has stopped doing pe and after school clubs also stopped gymnastics, she misses this and the social side, can they ever go back?

But you feel so torn, is this normal?

D is finishing her tea, but is struggling with snacks and supper, it's awful you feel helpless then angry, again is this usual?

No I haven't read that life stops but I will do, I have read Eva musby, but any other advice would be great,
Does this illness ever go away? Can people really be cured from it?
Sorry I just have so much to ask x
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wilkie2
Hi tooth fairy,
I appreciate your reply,
Would you really? She has always bin petite but obviously she is very low in weight now, I'm so scared for her and what she will feel like etc and experience in a in patient unit,
we are in the UK so she will receive NHS , that's so good about your S it gives hope hear about recoveries,
Thanks again X
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Torie
Toothfairy is right - Your d is very ill, and she needs regular medical monitoring in addition to meal support to ensure she finishes every meal and snack. Many probably most families would not be able to manage that at such a low weight. So sorry to tell you that is my opinion. This illness is really tough to beat, and it takes a very determined approach to get them where they need to be.

Every kilo she loses is a kilo she will need to regain, and each kilo is harder than the previous one. Plus, she should be growing and gaining at her age, so you're chasing growth.

Please feel free to ask all the questions you would like. xx

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

wilkie2@sky.com wrote:
There's no way I could supervise in school D would go crazy at that but I think she is finishing her pack lunch even though only small,

I'm going to be totally honest here. She is almost certaintly ditching the lunch. Our family stories were that my son couldn't lie - his face gave it away every time! But not since he got ED. This horrible illness stresses them so much that the only way they can survive is to lie. We found this very hard to get used to as it was such an unknown problem for us but we do not punish him for symptoms of his illness. Instead we lovingly close the loopholes so he does not have to lie, the eating disordered side kicks up a fuss but we have had to get a bit hard-hearted over that sort of thing. Only food we see going into his mouth counts. Think of it like getting your kid to chemo; I imagine they hate it, are scared and beg you not to make them do it but you know this is what they need to survive so you love them, support them and still make them do it. This is the same; it actually doesn't matter what they want, we know better.


wilkie2@sky.com wrote:
She is due to have a assessment for hospital admission but we really don't want her to be admitted , as she is just starting to settle in school and make friends etc, she enjoys her lessons but she has stopped doing pe and after school clubs also stopped gymnastics, she misses this and the social side, can they ever go back? But you feel so torn, is this normal?

Again, no parent wants their kid to go to hospital for any reason but sometimes medically they need to. And kids with other illness miss school, social lives, sports. It sucks for them too but that's life. Her health is vital. The best chance of beating this illness is first full nutrition and weight restoration asap. This is the foundation of recovery and without it you will get nothing. Do what you need to now so she gets better as quickly as possible and moves on with her life. She will miss out on far more if you don't. But, of course, you are torn! God, all parents want their kids healthy and happy. But some kids get terrible illnesses and we just do our best to manage our own emotions and take the best steps to get our kids better.


wilkie2@sky.com wrote:
D is finishing her tea, but is struggling with snacks and supper, it's awful you feel helpless then angry, again is this usual?

Normal, normal, normal. You are at the beginning of your journey and will need lots of information and to learn skills and then practice, practice until you learn what works best for your daughter. But please try not to display your anger, feel it but keep it quiet until you can scream when you are alone in the car!

wilkie2@sky.com wrote:
Does this illness ever go away? Can people really be cured from it? Sorry I just have so much to ask x

Ask away. Information is the very best tool to beat this monster illness.

This is my own non professional opinion: This illness exists on a spectrum. Some people do have a rougher time than others. Yes absolutely people get better even people who have been very sick for years or decades. But it takes much longer than you expect or want. You are not cured per se as you always have the genetic and biological predisposition to relapse but there are very many steps you can take and I for one will be making a relapse prevention plan with my son when we get to that stage. The aim will be that he develops healthy prevention habits and the ED disposition is a background drone. As Carrie Arnold says so well she wants her illness to be and remain in the past tense and her recovery to be always in the present tense.

My best advice is to keep coming on here, for both information and emotional support. They are the most important weapons we have.

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

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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
Welcome to the forum, sorry that you have had to make your way here. 
Much of what you are describing in your D's behaviour sounds normal. At a rough guess your D is at around 60% of her expected body weight. My D had a similar BMI at the same age when she first got ill with AN.

Yes your D can get better, they can fully recover, but the sad news is that not everyone does. The faster you can get your D back to her normal weight trajectory the better your chances are of her recovering completely. Sadly my D is still not fully recovered, we are six years into this illness. It is a long road, but I do see her recovering fully one day. It is a work in progress and slowly but surely we are getting there. 

With this in mind, and you relying on the NHS, you may need to push hard to get the best care for your D. The sad fact is that the NHS has pockets of good care, and pockets of dreadful care. This particularly is an issue with eating disorders. Your D is seriously ill given her low weight. If she has always been petite has there been long term issues with food and diet or is this what would be expected in the family? 
FBT  is generally recommended for those >75% of expected body weight. I am pretty sure your D falls below that threshold. I have heard from those who designed FBT (in this case Daniel LeGrange) that they recommend inpatient treatment or similar to stabilise those less than this with a view to then continuing FBT once things get moving a bit more. If your D is being treated as an outpatient she needs close medical monitoring as she is at high risk of complications from her anorexia nervosa.

The most important thing for your D at the moment is her nutrition. It is more important than school, socialisation or anything else. I understand how worrying it is, when it feels as though you are removing every bit of pleasure from their lives. She will get back to this, but food really does need to come first, and the faster she starts gaining weight - preferably 1kg per week, the better. 

D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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wilkie2
Hi
Thank you all so much for your responses and advice, I think I have needed to hear your advice and from this will agree to admission when she has her assessment , it is so hard as you do feel like your taking everything good away in their little life and all we want is them to be happy, and at times you see that happiness then out off no where things happen again , it's so cruel that are children experience this and you want so much to take it all away for them don't you,
Thank you again as I do think I head had my head in the sand and thought no I can do thins and my h has been more open to admission but I've tried to convince him she's are daughter and we can battle with her, but after hearing all your advice I think it's time to accept that she does need more help even though she thinks she doesn't and she begs me not to let her go to hospital , she has weekly weigh in with camhs , but gets very anxious about it again is this normal?
Thank you all so much for your support x
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deenl
Weighing was so stressful for our son that we moved to blind weighing. It has made a huge difference to him in this weight gain phase.

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

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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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wilkie2
Oh really thanks for that tip will try that on Monday at weigh in
Sending best wishes to you all x
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wilkie2
Hi
Can I just ask another question ! Sorry for all the questions !
How do you manage with work? Do you take time off or do you carry on going ? What if your child is in hospital what do you do then?
Thanks x
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Morgana
Hi Wilkie, my heart broke a little reading your posts as it reminded me of a point where I realised our d needed more than we could do at home. We'd been refeeding for 4 months and could not get her past a certain weight. The idea of ip scared me so much but then I realised it was what she needed. Yes it meant a stop to all the things she loved, but our children have an illness that wants them to starve to death. It't not US taking from them, it's the illness and we need to get them the best care we can. 

I got some really good advice when I posted questions about ip so feel free to look back on my post history.

With regards to work, when we started re-feeding at home I stopped working and initially h reduced his hours. Even now with d in ip it is my life. I visit every day, there are meetings, appointments etc and we've had such a huge traumatic time so I only recently started working part time from home. 

Everyone is different and of course it depends on your situation, but the more time you can give for meal support and appointments the better.
15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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wilkie2
Hi Morgana
Thank you for replying , I know it's like a sledge hammer hits you isn't it, it's hard when your child needs help and you can't do it, thank you I will look at all your previous posts as I think I will find them really helpful as like you probably had I have lots of questions, with work I thought as much ip takes over everything but you as a working mum you feel you have to keep it all going don't you , I have a younger daughter too who is doing ok but is this normal the guilt you feel about your family?
I wish I could just take it all away for her it's helpful to be able to off load!! Sorry I am prob being a pain! Thanks x
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Sotired
Hi Wilkie,
Most people here either have to take time off work or put their child in residential treatment.we took our d out of school for refeeding for two months.when that was unsuccessful we put her in hospital.anorexia has to learn that loopholes get closed,one way or the other.
For us,when our child was in the kids hospital, our hospital does FBT, so her dad went in to do breakfast with her and I did lunch.i would stay overnight occasionally but have other children at home so was unable to spend more than a few hours a day at the hospital.
Ip is frightening,but the alternative is much worse and I think we do ourselves and our children a grave disservice if we don't look at every option.anorexia and bulimia are varied in severity-the same as other illnesses.when I came on here and read all the stories of success I felt like the worlds biggest failure.but I'm not.we tried FBT for a long time but our d had the worst stubbornness ever and consequently we had to get used to hospital admissions,but you never forget the first one.
If that is the safest place for your d for now,then that's where she goes.there is a time and place for treatment at home and a time and place for hospital.
If your d is severely underweight then hospital can kickstart weight gain .they may do this by nasal gastric feeding (NG feeding).in our hospital this happens for three days and then the idea of food is reintroduced.where we are we are expected to bring food from home after the second week as this is what they will be eating when discharged.they keep the tube in whilst the child is struggling so that they can still do the feeds via tube if necessary.
Ideally one of you needs to stop work if possible.there is a lot of time needed for refeeding,it takes all day at first.you have to take your child for blood tests,weekly FBT therapy.if they require further admissions this takes a day in reality to get them admitted,longer if you have to wait for a watch.
If you are doing refeeding at home YOU CANT DO ANYTHING ELSE WHILE FEEDING THEM.you have to sit and watch EVERY MOUTHFUL.because anorexia makes your child put food in pockets,up sleeves,in the waistband of their shorts...and then it's either flushed down the toilet or hidden in their room (I'm in the found three full bags in her room club).
School is a dream only as unless you have someone trained to watch every mouthful go in,nothing goes in.
In the beginning everything and everyone in your life suffers as you learn all the tricks and fight the prejudice this illness engenders in others.
So pull together your troops.if you have someone who can make you a meal a week for a while do that.if you can hire a cleaner once a week do that.if you have someone who can sit with your d-because yes,24/7

supervision is required-so you can get some time to go for a walk yourself to clear your brain ,do that.

This illness is not something that turns around quickly, so you have to develop a siege mentality.accept that you have to do whatever it takes to keep your child safe and that it will be upsetting.to her,to you,to everyone who loves her.but there isn't any point telling you this is quick,it isn't.so it's about putting supports in place for your family to help you get through intact and (reasonably) sane.
Keep asking questions,be as specific as you need to.theres almost always someone who has been where you are.
Kind wishes,
Sotired42
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Torie
wilkie2@sky.com wrote:
Hi Can I just ask another question ! Sorry for all the questions !


Please don't worry about asking too many questions. Ever. We love questions. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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wilkie2
Hi
Thank you all for your advice, if I am honest I really thought it be resolved in weeks you know increase your food and usual life resumes, but this really isn't the case is it, how did you all find accepting that the family life you once had isn't happening any more as I am really struggling with this, I feel I am saying oh I I all the time but I know how hard this is for my d and everyone else, we have bin involved with camhs for 12 weeks and gone full circle she lost then is back to the original weight of what she was is I know it still very low , she has bloods done weekly and they are ok ish , is there anything you have found that brings on that light bulb moment for your child ? I keep thinking we have it then no! Also her face and voice changes when refusing food etc is that normal? I hate to say this but it is like at times she is possessed , then other times she's lovely but her spark has gone , you have all taken the decision for ip for your kids and it's helped so why I am I finding this so hard again is that normal!! Thanks xx
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wilkie2
Also I'm going to look now for the books you have recommended x
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ooKoo
Hi Wilkie, and welcome [wave]

wilkie2@sky.com wrote:
I think I have needed to hear your advice and from this will agree to admission when she has her assessment


Personally, I wouldn't be just agreeing to admission, I would be positively insisting on it!  A BMI of 13 is extremely low.  As a benchmark for you, my D was extremely ill and has had multiple medical hospital admissions and her BMI has never been below 17.  On one hospital admission, her heart rate has been so low that she was on 5 minutes observations in hospital.  On another, her blood sugar levels have been so low that they though she could slip into a coma.  Her postural drop has been frightenly worrying (enough for an instant Section under the Mental Health Act by the Paed, as again, they were concerned about permanent heart damage).  All at 17+ BMI.

I wouldn't worry about her missing out on school and friendships etc.  getting her better out-trumps all of that, many on here have missed GCSEs, Proms, holidays and many other important milestone events, but the alternative is unthinkable.  The quicker that you (all of us have been here, so we all totally get it) accept that she will have to miss all of that, the sooner you can start really refeeding and get the weight back on your D.   It will all be waiting for her when she is better.

As far as work is concerned, when we were refeeding at home, both my husband and I took 3 months off work at the same time.  In the UK you can't take more than 5 days (I think) as carers leave, unless you child is a baby or is registered as disabled.  This means that you have to play the system a little and be signed off work with stress, via your GP.  I went back to work when my  D went into IP - luckily my D's IP unit was very local, but it is a lottery on the NHS and you could literally end up anywhere in the UK due to a bed crisis.

I hope my answer isn't too blunt, it isn't meant to be (I am at work having a sneaky lunch time browse and am running out of time!!).

Please don't feel you are a pain, this forum is here to answer questions, share experiences and offer advice based on those experiences.  x
UK - South East

19 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions. 
2017: CAMHS CBT. WR, dropped out of 2 different colleges and started an apprenticeship.  Started having grand mal seizures and was diagnosed with epilepsy in Nov 2017. Sacked from job because of this.  Tribunal ensued.
2018 - doing a Psychology degree through Open University and working in retail to pay her way in life. Relapses with eating disorder in June 18 and Nov 18 😢. 

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
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wilkie2
Thank you I need this people to be blunt and give their advice as I'm unsure to this and mixed up, she has got a slow heart rate think is 53 but they said this can be as she was athletic ? Her bp is low but again it was said this can be normal for athletic kids, right thank you I need to chase up this assessment don't I? Camhs have bin putting the forms in for admission assessment for 10 weeks and the other they said they was doing it but I haven't chased it as I suppose I've bin scared of ip but reading and digesting all your advice and info makes me realise as hard as it is ip is needed thank you so much xxx
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wilkie2
Hi tooth fairy
Everything you just said then is what I've bin thinking and saying to myself sell this pay for that etc, it's not a decision anyone has made lightly at all is it and seems in a roundabout way we all go through the same feelings?
I will ring and see what is happening as suppose the sooner it starts the sooner she will be weight restored and that possessed look gone , thank you for all your advice about work too xx
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Psycho_Mom
Hi,

Welcome to the forum, so sorry you need to find yourself here. But you've gotten really good advice already. Your d sounds very ill and if it is not possible for her to eat well and gain weight fast at home it does sound like she needs a higher level of care. A low heart rate is a typical feature of malnutrition, and it is dangerous. Medical people do sometimes seem to mistake a low heart rate due to malnutrition for one due to athleticism. It's simply not. It indicates the heart and body are in extreme distress. 

Here's some info on medical admission criteria:

http://www.feast-ed.org/?page=ClinicalGuidelines


and here's some quick links to information you may need, you can print out and take to your doctors if necessary:

http://www.feast-ed.org/?page=ForCaregivers


The death rate from this illness is between 10-20%, mainly due to heart failure or suicide. And better recovery rates are associated with quick and aggressive intervention and weight restoration. Make a big noise if you have to and get your d the help she needs right away.

Keep us posted, keep asking lots of questions, that's why we're here.

best wishes,
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Torie
wilkie2@sky.com wrote:
Also her face and voice changes when refusing food etc is that normal? I hate to say this but it is like at times she is possessed , then other times she's lovely but her spark has gone ,


Yep, normal. Terrifying, but normal.  

Your real d is in there, but she is being tormented and bullied in what should be the privacy of her own brain. You will see more and more of your real d as she gets closer to wr.

Hang in there. It does get better. xx

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

wilkie2@sky.com wrote:
is there anything you have found that brings on that light bulb moment for your child ?

One of the symptoms of anorexia is anosognosia. That is the inability of the brain to realise it is ill or how ill it is. This stops your child getting that light bulb moment. The adults around her need to do the heavy lifting until she is well enough. Carrie Arnold is a science writer, blogger and has recovered from anorexia. Here is what she wrote on the topic. http://edbites.com/2011/10/from-the-archives-waiting-for-the-lightbulb/

wilkie2@sky.com wrote:
Also her face and voice changes when refusing food etc is that normal? I hate to say this but it is like at times she is possessed

This is normal and I hate it with a passion. I try to remember that underneath the gremlin face is my real son and I don't react.

It is all very overwhelming at the stage you are at. I remember it well. But as I gained more knowledge and support my emotions calmed down a lot and I was able to function better.

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

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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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ed_newbie
Hi Wilkie and welcome.  

All of the feelings, doubts and fears you are experiencing are totally normal.  But the more you learn on this forum the more power you will have to help your d beat this illness.  You'll have days when you feel like you've hit rock bottom and that's okay.  You are entitled to feel awful when you are battling such a horrible, confusing illness.  

The most important thing is to always have hope and to take every action possible to get your child the best care available as quickly as possible.  

The people on this forum are amazing. I visit nearly every day - it is my lifeline.

"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

15 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and pushing our way through puberty and rapid growth.
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