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enfys

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Reply with quote  #1 
I have just discovered my D has an ED and we are devastated.  She is 15 - we think it started 5 months ago and has escalated in the last 2 months.  The GP has referred her for a psychiatric assessment and ED clinic - I do not know how long we will have to wait (we live in Wales U.K.).  We have been talking openly with my D - she has admitted making herself sick and has tried laxatives.  The doctor said her weight was OK - I know she is too thin.  I am assuming she is anorexic - I am not sure she realises the seriousness of this or how ill she is.  She has cold hands and feet constantly, has chill-blaines on her feet and looks terribly pale.  She says she wants to lose more weight which is so scary.  I realise this is a mental illness & I think related to a lack of self esteem in my D.
She has agreed to eat 3 meals a day - I cannot monitor her in school but she is making her own lunch (today just couscous and peas - she is living on couscous).  I am scared that she may be throwing up after eating and I am watching her like a hawk.  I am having difficulty sleeping and know this is a long process if not a lifetime illness which terrifies me.  I am afraid she could die.  We are wondering:
- if it is worth seeing a specialist privately (we have health insurance which covers this but will have to travel out of the area to Bristol see them) ?
- How can I trust my D ? Any tips on encouraging her to eat and fight this overwhelming desire to not eat/get slimmer ?
- coping mechanisms for me & my family - how do I keep calm & carry on (I am repeating this to myself but it isn't working) ?
- Have I caught this early and what are the chances that she will recover fully ?
thank you for reading this

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Enfys

tina72

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Reply with quote  #2 
Hi enfys,
a very warm welcome from Germany and I am so glad that you found us here. This forum is a great help and was a lifesaver for us and we all know what you are going through now.
First: When her GP says her weight is ok and she looks what you describe he is wrong or you are blind. As professionals often fail with that, I am sure he is wrong. What is her heigh/weight at the moment? Which percentile is this and where has she been before in her life?
Is she restricting food or eating with strange behaviour (cutting small pieces for example)?
Please help us with some more information.
Tina72
enfys

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Reply with quote  #3 
Hello Tina72 thank you for your quick reply.  My daughter is around 5 foot 7 inches in height and weighs around 8 stone 12 (51 kgs).  This means her BMI is OK on the chart but I know this is not right for her frame.  She has the same body shape as me.  She has lost a lot of weight in a short time and is vey bony - her bust has shrunk.  She thinks she needs to lose more weight on her legs - I am trying too make her realise she doesn't and she will lose weight everywhere else first.
I haven't noticed her cutting food in a strange way but she is limiting what she eats - she will not eat 'junk' food - pizza, chips, chocolate etc.  She has admitted binging on chocolate over Xmas and then throwing it up - and doing this after eating anything she deems junk food.  She has not admitted doing it after eating 'healthy' food and I am hoping she is being honest with us about this.

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Enfys

tina72

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Reply with quote  #4 
To answer your other questions shortly:
1. You need some help asap, best from a FBT therapist in your region if available. Family Based Therapy helps you with refeeding and has the best outcome (evidence based) for ED. If that is covered by your insurance, drive where necessary.
2. You cannot trust her with anything while she is in the hands of ED. The eating disorder makes them steal, lie, doing strange things you would NEVER expect your d to do. So only trust yourself and your eyes. What you haven´t seen that she is eating it, she will not have eaten. Sorry to say this.
3. Read Eva Musbys book: "Anorexia and other Eating Disorders: how to help your child eat well and be well: Practical solutions, compassionate communication tools and emotional support for parents of children and teenagers."
You will get very practical help with every situation you will get in. Get your friends and family in the boat. Ask for help with laundry, cooking, shopping and the garden. Do something nice for yourself and hubby and have some time out from your d if possible. Try to separate your d from the ED. The ED has entered her brain, but she is still there behind it and needs your help. She is not guilty.
4. You have caught it early I suppose and if you do something asap she has a good chance for full recovery. But it is a long term run, a marathon, and you will need a lot of power to fight this. It is a strange and severe illness. But it does not have to be a lifetime illness and she will not die if you act NOW.

To give you some hope, my d started restricting at age 16 and was diagnosed at 17. She went IP for 3 months until I found FBT and this forum. We needed 6 months to refeed her and now she is 6 months in recovery. We are still working on it but she knows she is ill now. Her mood is much better and she is living a normal life of a young adult now. She is able to keep her weight and has nearly no fear food any more. We hope she can go to university in October. So recovery is possible, but it needs a lot of time.

To find this forum was step 1. Now read and learn as much as possible and get a plan.
You will do most things on your own. You need to get in charge for food intake 24/7 for a long time.
So you need to find a way to control her intake in school and think about leaving your work for a while if possible.
Ask whatever you need. Here are a lot of experienced parents from all over the world 24/7.
Tina72
tina72

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Reply with quote  #5 
So her BMI is under 18 and if she has lost a lot of weight and always had a bigger figure and is eating "healthy" food than I would suppose you are right. My d started with "healthy" food, too.
I am no doctor, but all the signs for an ED are there. Plus throwing up and using laxatives.
This thin leg thing I know pretty well. That is ED talk. She will not stop losing weight even if her legs are just bones. Don´t engage in that talk, you cannot win this.
If she was not throwing up after "healthy food" up to now, that is only a question of time. Try to stop purging asap. Tell her to visit the loo before meals and then watch her for at least 1 hour after meals. Hang out the bathroom door if necessary. Purging makes it all more difficult.
Is she exercising extremly?
Is she having her period?
Tina72
enfys

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Reply with quote  #6 
Hi She has said she hasn't thrown up recently I am hoping this is true.  I am watching her like a hawk trying to make sure she isn't.  She is drinking a lot - large cups of tea followed by a glass of water or squash.  She was drinking gallons of fizzy pop but seems to have stopped this after being nagged.  She has been exercising excessively but says she has stopped because she has no energy.  I am hoping this is true - she was exercising in her room and hiding this so it is difficult to be sure.  I am encouraging her to sit with us in the evening - she has spent a lot of time alone in her bedroom in the past.  She has also admitted taking cold baths to lose weight - I'm wondering if she has been looking at websites that encourage weight loss.
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Enfys

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Reply with quote  #7 
Welcome to the forum, so sorry that you have had to find your way here. 

Unfortunately many GP's have little knowledge of eating disorders, and it is common for assessment of ED's to underestimate the severity of illness. 

In the UK there are NICE guidelines for assessment and there are also MARSIPAN guidelines for both adults and young children. They are easily searchable but quite long and detailed. A helpful Australian site http://www.feedyourinstinct.com.au/ produces a list to take to the GP for assessment and also has links for the GP to look at in terms of assessing the severity of illness. 

For yourself I would recommend reading as widely as possible. The learning center is a great place to start. I am sure your D can recover, unfortunately though it will quite a long time, this is not a quick illness. Even 2-3 years is considered a quick course to recovery. 
I think it important to know that your D has little if any control of her illness. Her  ability to follow any agreement as regards eating, stopping exercising, stopping purging is very poor. The treatment with the best evidence base for adolescents is FBT, and it puts you the parent firmly in charge of feeding your daughter. In terms of getting started with re-feeding, she will almost certainly need to regain all of the weight she has lost, there are some great guides here. http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartA_Nov_2017.pdf  and http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartB_Nov_2017..pdf
as well as this one from FEAST http://www.feast-ed.org/default.asp?page=NutritionGuide

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
enfys

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Reply with quote  #8 
Thank you for your replies and information.  I would not wish this on anyone but it is reassuring to know that others have been and are going through similar and are finding ways to tackle this illness and cope.
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Enfys

tusdad

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Reply with quote  #9 
Hi, I'm in North Yorkshire. Very similar situation. My 14 yr old daughter  lost quite a lot of weight quickly . She admitted to throwing up and giving her packed lunch away at school. We were  referred to a clinic in nearby Middlesbrough who specialise in ED's for children and young adults . Although she has stopped losing weight and is still technically ok weight wise and does not want to lose more weight, she is constantly counting calories limiting  herself to 1300 cals a day (more like 1800 with the extras I am putting in) she is still struggling with the illness . She has yet to be properly diagnosed but doctor has indicated EDNOS which is unspecified eating disorder. If your daughter still actively losing weight she needs help immediately. You have caught it early and success rates are very high. Insist your GP refers you to a clinic as they have a tendency to initially dismiss such things but quick intervention  is very important. I know exactly what you are going through it has a huge impact on parents  with sleepless nights and depressive thoughts  but try and stay positive as it can be a long haul, God Bless and best of luck
tina72

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Reply with quote  #10 
Hi enfys,
"She is drinking a lot"
Try to stop this. More than 2 l a day is not healthy. She might fill up her body with water for the weighings. Try to check that. And be aware that the opposite might happen. My d stopped drinking from nearly one day to another because she thought the water would make her belly fat...

Control the exercising. It might be true that she is now to weak for it, but it is horrible what they can still do with such a underweight body. Take the key of her room door and check that. Tell her that if you catch her up with exercising she has to add those lost calories with extra food like ensure- that works mostly.

"She has also admitted taking cold baths to lose weight - I'm wondering if she has been looking at websites that encourage weight loss"
That is really possible. So check her computer and her handy for those proana web sites and lock them if possible. Check her social network for contacts with other ED patients. You cannot imagine what "tricks" they share. If she is not compliant with that and you think she might hide something, take away computer and handy and leave her one which can only do phonecalls (no smartphone). Internet is a bad source for ED patients.

"I am encouraging her to sit with us in the evening - she has spent a lot of time alone in her bedroom in the past."
That is great. Try to do something with her that can distract her. TV, computer games, board games, whatever.
Try to give her some nice time with you and do something with her that has nothing to do with food. You need to show her that you are the friend and ED is the enemy.

Tina72



cjac16

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Reply with quote  #11 
My d swore blindly she was not vomiting and that I was the world's worst to even suggest such a thing -  of course it was all rubbish.  She wasn't allowed anywhere near the bathroom for an hour or so after eating.  We ended up taking all locks of bathrooms.  I ran the bath so that the running tap could not be used to cover up the sound of vomiting and sat outside the bathroom door.  She would also drink loads before she would vomit so I would watch that.  Apparently it makes it easier to get rid of the stomach contents.  Also, callouses develop on the knuckles from the fingers being used to make them vomit - check your d as that is always a giveaway.  If you can use your private cover I would go for it as the NHS often take ages.     My d is 5ft 6in and her target weight was 56/57kg so I would say that 51kg is definitely underweight.  Whilst you are waiting for treatment, you need to get your d eating three meals and three snacks a day with a minimum calorie value of 2,500 per day.  This site has a wealth of information and was my saviour.
Torie

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Reply with quote  #12 
[Hello, and welcome to the club no one wants to join.  So sorry this vile illness has invaded your home.  My reply is interspersed below:

Quote:
Originally Posted by enfys
I have just discovered my D has an ED and we are devastated.  She is 15 - we think it started 5 months ago and has escalated in the last 2 months. 


It is really great that you are on this so quickly and that you have already found this forum.  That's a great start!

Quote:
Originally Posted by enfys
The GP has referred her for a psychiatric assessment and ED clinic - I do not know how long we will have to wait (we live in Wales U.K.).  We have been talking openly with my D - she has admitted making herself sick and has tried laxatives.  The doctor said her weight was OK - I know she is too thin.  I am assuming she is anorexic - I am not sure she realises the seriousness of this or how ill she is. 


She almost certainly does not, but that's okay.  It's pretty typical for sufferers to be convinced they are fine, healthy, nothing is wrong except the parents.  It doesn't matter if she does or doesn't recognize that she is ill.

Quote:
Originally Posted by enfys
She has cold hands and feet constantly, has chill-blaines on her feet and looks terribly pale.  She says she wants to lose more weight which is so scary.  I realise this is a mental illness & I think related to a lack of self esteem in my D.


ED absolutely devastates their self esteem.  It is like having a terrible bully set up shop in your brain and scream horrible things at you all day long.  Ugh.

Quote:
Originally Posted by enfys
She has agreed to eat 3 meals a day - I cannot monitor her in school


Oh dear.  Are you SURE?  I know it is inconvenient, difficult, embarrassing, etc. but, really, if there's any way AT ALL you can monitor her lunches it would be a really good idea.  I urge you to think very hard about this, and if you truly can't monitor her lunches, we can help brainstorm ideas for how she can be properly supervised.  (I never found anyone who could monitor carefully enough because people just can't imagine how sneaky and devious ED is.)

Quote:
Originally Posted by enfys
but she is making her own lunch (today just couscous and peas - she is living on couscous).  I am scared that she may be throwing up after eating


Yes, that seems likely

Quote:
Originally Posted by enfys
and I am watching her like a hawk. 

 
Excellent!  It is amazing how this illness turns them into magicians who can disappear food in the blink of an eye, and liars and thieves despite their otherwise honest character.

Quote:
Originally Posted by enfys
I am having difficulty sleeping and know this is a long process if not a lifetime illness which terrifies me.  I am afraid she could die.  We are wondering:
- if it is worth seeing a specialist privately (we have health insurance which covers this but will have to travel out of the area to Bristol see them) ?
- How can I trust my D ?


As others have said, you can't trust your d right now.  No no no, not not not.  This vile illness is stronger than she is at the moment and will make her lie.

Quote:
Originally Posted by enfys
Any tips on encouraging her to eat and fight this overwhelming desire to not eat/get slimmer ?


We don't encourage them to eat; we require them to.  Many here adopt a plan called Life Stops Until You Eat (LSUYE), which means that as soon as she has finished her meal, she can watch the video, play the game, whatever it is she is looking forward to.  Some have seated their ED-kid in between both parents to prevent kid from fleeing, and if she leaves the table anyway, follow her with the plate.

The only way to halt the drive to get slimmer is to put on weight.  So weird, I know, but that's how it works.  There's really no point in trying to reason with her because she is irrational about size, shape, weight, calories, etc. right now, and pretty much by definition, there is nothing to be gained by reasoning with someone who is irrational.

Quote:
Originally Posted by enfys
- coping mechanisms for me & my family - how do I keep calm & carry on (I am repeating this to myself but it isn't working) ?


Please remember that it DOES get better (and easier).  Unfortunately, it might get worse first, but in the end it DOES get better.  I received the good advice to take it one day at a time and avoid looking too far into the future.  

Quote:
Originally Posted by enfys
- Have I caught this early and what are the chances that she will recover fully ?
thank you for reading this


I hope you have caught it early.  If you are correct that this only started 5 months ago, then yes.  But many here have belatedly realized the illness started taking hold much earlier than first thought.  Either way, the chances are very good that she will recover fully if you are able to get her gaining weight at a good clip and stopping purging.

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

-Torie

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

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Reply with quote  #13 
Wow I am overwhelmed by all of your responses it helps so much to know that we are not alone and that this illness can be overcome. I have to focus all our efforts on beating this & your suggestions are very helpful. I have found possible 'ED specialists' nearer to our location covered by medical insurance. I am thinking a psychiatrist rather than a dietician would be more beneficial?
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Enfys

EC_Mom

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Reply with quote  #14 
Enfys, you are really in the right place, and in my case this board was more informed and correct than the first two doctors we had and also than a bunch of therapists and at least one nutritionist. Which is not to say that your d doesn't need a doctor. If her hands and feet are purple she might need hospitalization. The key test is "orthostatic blood pressure", a known and easy procedure that measures blood pressure before and after lying down, at prescribed intervals. That shows whether the heart is compromised.

Everyone is telling you the right stuff here: Your d's illness is making her very irrational and also compels her to lie to you and to restrict food and purge. It's not her fault, and it's not your fault, and it's not her choice.

It is so hard to get one's head around this, but truly you cannot 'trust' her because her brain is telling her things that aren't true. You also can't persuade her that she is mistaken and that she isn't fat, etc. It's counterproductive to put effort in that direction. When she complains and cries and so on, murmured comfort and lots of distraction are called for--videos, visits, puppies, whatever.

And the only way out is through: She needs to gain weight. You need to put as many calories into as small a footprint as you can (cream and canola oil everywhere) and supervise her closely while she eats it, and for 1-2 hrs thereafter to make sure it all stays down and in. Lunch tends to be a sticking point for parents, but for us it was a turning point to realize I WAS GOING TO SUPERVISE HER LUNCH. At that point my resolve strengthened, and her ED got scared. I took leave from work. Other people find other solutions. 

Bottom line: If she didn't eat in front of you and remain supervised thereafter, it doesn't count. You cannot 'trust' her--or better understood, you cannot trust that the eating disorder will allow her to eat.

Keep coming here, keep asking. We've all done it. It's awful and seems impossible, but recovery really does happen. My d is a 'normal' teen now (knock on wood!), with pizza and ice cream and going out and lots of happy eating.




EC_Mom

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Reply with quote  #15 
Two more points: The dieticians are, at most, for you. But you know how to feed your kid, you did it all this time. Add calories--even more than any dietician will tell you. And for this stretch of time, fruits and vegetables are not the priority. Calorie footprint is more important--tons of calories in small footprint.

Doctors and therapists are unfortunately often using oldfashioned, non-evidence-based ideas about ED. If you hear anyone talk about "issues of control", or "it's not about the food" or "parents need to leave this to experts", run the other way. Many of us have learned that bad 'help' is worse than no help at all. 
tina72

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Reply with quote  #16 
Hi enfys,
how are you doing?
Tina72
enfys

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Reply with quote  #17 
I can't tell you how helpful all of your responses have been so many thanks for reading and replying.  We are looking at private therapists nearer to home - registered Psychologists with an interest in ED's and I will check they have FBT.  I have also contacted the school to meet the head of her year and there is a school based counsellor so it may be worth her meeting with them.  She seems to be cooperating with the 3 meals and 3 snacks a day - if a salad or couscous counts as lunch.  I realise it is very early days and we cannot let our guard down.  I am looking into ways to check she is eating lunch in school.  She has been asking if we think she has gained weight and is checking the calories on everything.  I am feeling less fearful as your advice has made me realise we can influence her chances of recovery and we are not helpless against this terrible illness.
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Enfys

tina72

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Reply with quote  #18 
Hi enfys,
"if a salad or couscous counts as lunch"
no way this is enough

"looking into ways to check she is eating lunch in school"
some parents joined their kids for lunch or helped in the school cafeteria
we fetched our d every day and took her home for lunch and drove her back afterwards
see what is possible, but if you do not really know she has eaten lunch do not count it

"She has been asking if we think she has gained weight"
Do not engage in this. Say "I know that is hard for you at the moment" or something else and change the subject.

"and is checking the calories on everything"
try to unpack containers in the grocery and leave them there
try to buy big yoghurt glasses and put her amount in a bowl (if you fill the bowl when she is in school you can add what you like)
say something like "we try to avoid plastics or garbage" [wink]

If you don´t find a good psychologist who is doing FBT, no matter. During refeeding mostly it is not working because her brain cannot do something like behaviour therapy. After refeeding we found it not necessary any more. So many FBT kids do not have psychotherpy during refeeding. If you get something and it works, that will be great, but be aware that bad help me counteract your achievement. You don´t need a psychologist who tells your d that she should be choosing her food or that you just want to control her. Be careful with that. Bad help is worser than no help. See the therapist before without your d and ask all the relevant questions to see if they know anything about ED and FBT.

Tina72
runmum

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Reply with quote  #19 
Hi Enfys, we are also in Wales. Last year, we waited about 3 weeks from GP to assessment by CAMHS, then another month until 1st appointment with a psychiatric nurse.

As everyone has said, re-feeding is the key. Our dietician appointments have either been D alone or D plus us, and they don't agree with sneaking extra calories in, not that I could discuss this in front of D! I was given the confidence to challenge this by others on this forum and am sure it is the right thing for D. Just something to be aware of.

Good luck!
enfys

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Reply with quote  #20 
Thanks for messaging. That timescales doesn't sound bad. We found private psychologists near us but health insurance only covers doc's referral to psychiatrist and nearest is bristol. I am thinking it may be better to wait. My D seems to be cooperating and keen to get better although we are being vigilant. It is v early days. She has been eating 3 meals & snacks a day. I hope you have had success with your D's treatment ?
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Enfys

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Reply with quote  #21 
Hi enfys,

You've received a lot of great advice.  I would add a recommendation to read "Help Your Teenager Beat an Eating Disorder" by Le Grange and Lock (2nd Edition).  It is the place to start.

And there is hope.  It is reasonable to expect your D will recover fully with time and treatment.  

Generally you want a physician knowledgeable about EDs (to get a proper diagnosis and to monitor/treat physical health and symptoms) and a psychologist or psychiatrist who specializes in EDs (to provide evidenced based treatment based on your D's diagnosis and to support you as you help your D) on your D's treatment team.  The trick is finding professionals who are current in their understanding and treatment of EDs.  The field has changed a lot in the last so many years.  The book I recommended will help you get started.

Keep coming back.
tusdad

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Reply with quote  #22 
I agree with comment about dieticians. They of course are a key part of recovery but sometimes I feel your own instincts can dismiss certain advice .For example in discussion I mentioned  my daughter has  a 1000 calorie breakfast every day , followed by two 400 cal meals and a 200 cal drink in the evening (under protest). Her response was that daily meals  shouldn't be front loaded. My daughter specifically asks for a large breakfast and  rightly or wrongly I feel that has been keeping her afloat and don't want to risk ANY downward spiral , Clinic has indicated EDNOS as she doesn't want to lose more weight but is meticulously counting calories and displaying other  ED symptoms . I regularly plant extra calories and swap milk labels (full fat and semi skimmed) which I'm not supposed to do
enfys

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Reply with quote  #23 
Thanks for comments & tips plus I have ordered the recommended book. It's difficult to know if d is cooperating or making the right noises for our benefit. We are talking with her as much as possible & watching her closely. She is eating but still seeking the 'healthy options.
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Enfys

kazi67

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Reply with quote  #24 
Hi enfys
Welcome to the forum that none of us want to be members of but this is the place where you will get all the information you need to help you and your d
That book you have ordered is good there is lots of valueable info on the site too
but the most important thing as everyone is telling you is to make sure your d eat 3 normal meals and 3 normal snacks a day (supervise for an hour after) to ensure no throwing up
Its not easy but it is definately worth it and you will get your d back
My d is older so that is also more complicated as docs, physc, dietician, have tried to push me aside (as she is considered an adult 18)
Well she is 19 now but still is fully supported in every way by us so yes you are the mother and you don’t need to sit around waiting for them to tell you what to do
Trust your gut
You know what she needs you are her mother you are lucky in the way that she is still under age so under your “control” legally so to speak
My d couldn’t drink water let alone eat when she first became ill, I managed to get her drinking 3 glasses of milk a day when finally we got to see a “qualified dietician” she told her not to worry about drinking all that milk
Seriously!! So be very careful, it may be better for you to see the dietician yourself first
Anyway that was our experience and hopefully you will have more luck in that department
Hope this helps
x
kazi67

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Reply with quote  #25 
Hey enfys
My d also always wanted “healthy” foods and this habit has been very hard to break, in hindsight I would of started putting “not so healthy” food in front of her too
As I was advised on the forum on more than one occasion but didn’t “get it” normal food is the key and that includes the not so healthy foods too
Just thought I’d mention this as it’s probably easier to get through the tantrum over it early on in the refeeding phase than later
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