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scaredmom

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Reply with quote  #26 

Hi enfys,
kazi67 has great suggestions. Add the "not so healthy food". The goal is to normalise all foods. There is no such thing as bad foods. Please look up high calorie foods on this site. Also if you can add in oils, whipping cream, butter and cheese to anything you can. I used to add in whipping cream to the milk carton and mark it so that the rest of the family knew which milk was for D. 

At the beginning everything may cause a tantrum so best to add what you can then get it over with... I just kept telling d when she would rationalise the food ie "that has cheese on it" that I knew what was best for her. It took about 3 months for her to trust me and the same three months for me to finally feel confident. Some of us, me too, had to "fake it until I made it" Now if she is a bit anxious ie at a restaurant, I tell her to trust me and she just eats! It does get better.

all the best

enfys

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Reply with quote  #27 
I can't tell you how helpful you advice is - I feel sick all the time and it's like living an endless nightmare. I'm sure you have all felt the same. I just have to believe she will get better. She has a school trip booked in a few weeks time - 5 days from home. We are thinking it wouldn't be a good idea for her to go. Any thoughts?
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tina72

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Reply with quote  #28 
Hi enfys,
the school trip is NO good idea at the moment. Although it is only 5 days it will set you back and you have to restart again.
My d had missed her statements ride last year. She was 2 months after WR and we are still glad that we did not let her go. This year we will probably allow her to go for a short day trip, but that is 1 year after WR.
If you get a paper from her GP you might not pay for it if there is a travel cancellation insurance.
And if not, I would pay and leave her at home. The step back you will get is not worth it.
Sorry for that.
Tina72
toothfairy

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Reply with quote  #29 
Hi, I would not allow the school trip.
Even when my S was in recovery , I had to start with one night sleepover and make arrangements and a safety net around that. I am talking about when he could be compliant with all foods eaten at home, there is still a lot of work to be done after that before 5 day trips can be allowed... 
We are into year 3 , our kid is now in strong recovery and he is just now able to go off on a 5 day school trip. This takes a long time.
He went off on a scout weekend a year into recovery and did not eat enough and came home in a bad state....Even though there was somebody (adult leader with ED experience, her sister had ED) allocated to watch him, he still was not able to handle it.  

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scaredmom

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Reply with quote  #30 
Hi enfys,
I so agree with tina and TF here. 
It is best at this early stage not to send her for the school trip. When we were in the early stages, my D did not even go on any daily physical school trips. it is such a small sacrifice, but really worth it. She knew we meant that this was so serious and that nothing would stop us from treating her illness. It also allows her to trust that you will take care of her and that you know what she needs. Yes ED will fight hard! Just to warn you. 


Yes we all felt sick all the time- I empathise with you. And YES she will get better. One day at a time, one bite at a time. That is the way...
XOXO
EC_Mom

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Reply with quote  #31 
We had to cancel a school trip too. It's really the best thing. The ED is not allowing your daughter to eat--would you let her go on a trip with a travel companion who wouldn't let her eat? 

Her health is priority now. Everything else--EVERYTHING--is secondary, and that includes trips, school, grades, homework, etc. Also you need to show ED that you are not backing down, that there will be daily, regular, NORMAL eating. It will be a hard slog but it is the way to recovery.
mid73

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Reply with quote  #32 
Hi
We let our daughter go on a trip a couple of months after she had reached a healthy weight because being able to go on the trip had been a massive motivator for her. I didn’t want her to go however she did because as I say it’s what she had eaten for. She lost 2 kg in 5 days. Fortunately we were able to reverse this in a few weeks on her return but we were at a different stage to where you are. With the benefit of hindsight I wouldn’t have let her go as we went backwards mentally for a long time afterwards. So like everyone else my advice would be no trip.

Torie

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Reply with quote  #33 
Quote:
Originally Posted by enfys
She has a school trip booked in a few weeks time - 5 days from home. We are thinking it wouldn't be a good idea for her to go. Any thoughts?


Oh dang, sucks that you are right that she isn't well enough to go.  Ugh.  If she tries to blame it on you, please be clear with her that it is this vile illness that is preventing the trip; not YOU.

Hang in there.  It does get better. xx

-Torie

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wheresmywand

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Reply with quote  #34 
Hi enfys, welcome to the place where you will get the best advice and support.

I would just like to add my voice to kazi's about starting at the beginning with normal food, and not allowing her to continue so much with the healthy options.
I unknowingly colluded with my daughter's ED for a long time, I'm embarrassed to admit how long, just trying to get her to eat.
I hindsight I wish I'd ripped the bandaid off from the start and just served normal and high calorie foods, I believe it would have saved us at least a year.
Now I sort of have to start again in a lot of ways and the 'healthy' (i.e ED) eating has become even more entrenched.

You can do it enfys, you've made a fabulous start.
Well done. x

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17 yr old daughter dx RAN Jan 16, but starting restricting some months before that. Let go too early and now back home gaining weight again, slowly challenging fear foods and entrenched 'healthy, pure' eating habits and behaviours.
kezza1401

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Reply with quote  #35 
Hi Enfys

Sorry to hear that you have had to join this group x  I can see that you have had a lot of responses to  your post which is BRILLIANT.  I have found this site to be a very useful during times of despair especially when trying to tackle ED head on
My D was diagnosed with AN with Depression & Anxiety in October 2017 after losing about 2.5 stone in 2 months.  My D was seeing CAMHS for a different reason at the time so she was referred to their "Eating Disorder Team" for help so apologies but I cannot advise as to how to deal with the doctors and obtaining a referral.
Our D admitted to only living on 150 - 200 cals a day and would not drink anything especially water [frown]
We were advised in November that our D was not well enough to be at school (she is 5'7" tall and had dropped to 7st and her BMI was 15.3 and we were led to understand that if it got to BMI 15 she would have been admitted to a unit in Middlesborough (over 2 HOURS away from us).
My H and I had no choice but to take time off work and start "re-feeding" her with the use of a meal plan that was provided to use by the Dietician who is part of the CAMHS team. 
The first weeks of re-feeding were soooooo hard as we were sometimes sitting for up to 2hrs while she ate one meal.  I WAS SOOO shocked at how deceptive ED can be and what it made our D do [frown] (we have learnt to tell when ED is taking over cos my D goes into a trance like state just staring her plate and when we prompt her to eat she turns nasty with us), also we caught our D putting bits of food up her sleeve and down her back,  storing food under her bed, getting her friends to eat her food while at their house and telling their parents that she had eaten it.  the hardest part of this was the fact that my D thought she was OK and we were just making a fuss even telling us that we wanted her to be admitted to a specialist unit cos we couldnt be bothered with her (heartbreaking) but she believed the voice (ED) in her head that there was nothing wrong with her.
Our D was also diagnosed with Chillblanes which she said were very painful (we purchased her some slippers with little heat sacks that you put in the microwave and place them back in the slippers) she LOVED these.
I found the following helped us a lot:
***  Patience/compassion - I think this is the hardest part because I had to "put a face on" and change my ways as i am quite a hot headed person even though i was screaming inside but i thought to myself "If I shout and scream we would be back at square one and also this is no my D its ED.  
***  Telling our D that we were telling her to eat and she had no choice in the matter therefore had justification for ED that it was not her choice to eat;
***  Eating TOGETHER at the table so we could watch her every move with no distractions for us eg TV (I put Together in CAPS because this was something we had fallen out of the habit with,
***  Distraction - we used things like adult colouring books, colour by numbers, wordsearches/cross words, we didnt include use of phones as distraction as she was getting too distracted.
***  We made up a moto of the week relating to ED and success eg "Eat it to beat it", "Drink it to Shrink it" etc

I found Eva Musby's book titled "Anorexia and other Eating Disorders" Brilliant and would highly recommend it.

I hope I havent rabbited on too much and lost you on the 1st paragraph but please STAY STRONG and STAY IN CONTROL of ED.
 

enfys

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Reply with quote  #36 
Thank you so much for taking time to reply which has been incredibly helpful and reassuring. We have had a referral date for an assessment which is only 2 weeks after seeing the GP. They have said the appointment will take around 2 and half hours. My daughter is talking to us, spending more time with us and eating 3 meals a day but restricting what she eats to what she thinks is acceptable. I am trying to encourage her to branch into other foods (biscuits, marshmallows, popcorn etc.). I think she is also filling up on tea and squash. Funnily enough she has been doing paint by numbers and I have ordered more to do with her. She said it is v relaxing which will be good for both of us ! I am taking it a day at a time and just thankful that she is eating but can see this will be a long process to recovery.
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tulrika

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Reply with quote  #37 
Hello, I've only joined this forum a few days ago and have found it helpful to understand that others know this awful journey we're going through.  I know it's a bit late since your last post but I'll add my bit, if you find it helpful. 

My daughter was in the UK when she was first diagnosed, her symptoms very similar to your daughter's.  We had a well-meaning doctor who recognised she was sick, but had little experience of how to deal with ED, and many visits to various professionals to try and find ones who really could understand and deal with EDs.  You may have to be prepared to do a lot of travelling and a lot of trying to find the best care, and a team your daughter will stick with.  Keep persisting, when you find a good team it will be worth it.  

This is what I can tell you - we now have a female doctor (GP) who has done a lot of work with EDs, and emphasises the importance of various nutrients which are essential to the ED patient's brain.  Even restoring just a few imbalances initially may help with minor breakthroughs.  Our doctor gets blood, urine, ECG, blood pressure and heart rate tests done at or before every visit and is very thorough, she will sit with my daughter and show her what the ECG means or what her potassium levels are like, and she will prescribe vitamin/nutrient/potassium tablets if necessary to help restore imbalances quickly but also suggest foods to my daughter which can assist her health in specific and more long-term ways.  She treats my daughter's illness as a physical disease - which it is, the brain is as physical as any other organ - and by medicalising it she has helped my daughter understand the severity, but also made my daughter realise that she's not a 'nutcase' and that is is treatable.  My daughter feels like she's not being patronised and has attend every appointment, even though she is terrified every time that if she fails any tests she might be sent to hospital (which has happened).  If you can find a doctor as thorough and as respectful as ours, it can be a lifesaver.

I have now realised, as others have pointed out on these forums, the importance of the initial period where getting food to the brain and putting on weight is the first priority. Blood tests are particularly important as they can indicate where she's deficient.  A lot of sites emphasised zinc in the early stages when you're struggling to get them to eat anything, ED kids will often be willing to at least take a tablet as well.  Once the brain is starting to function a bit better, it's still a long haul but you can sometimes make connections with your daughter and eventually she'll thank you for it.  They say if you can catch the ED in its first year you have a much higher chance of quicker recovery, so hang on to that hope as you have done that.

In the meantime, understand that you will be abused by your daughter, yelled at, there will be flare ups if you say one word which is 'wrong' etc - try and understand this is the illness in your daughter's brain.  You'll have to be careful that you don't lose weight yourself from anxiety, please look after your own health.  Also, try and get out in the sun as often as possible, or get your daughter outside for gentle park strolls or walks and breathe in the fresh air because a lot of the time she/you will be hiding from the world inside your house (often with all the doors and windows shut so people don't hear the ED patient yelling or crying). Hopefully one day it will get better.

All the best xxxx 
enfys

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Reply with quote  #38 
1 month after first posting. We had an appointment with nurse & therapist very quickly & felt we have support & a plan of action. The eating plan 3 meals & 3 snacks was confirmed so thank you for giving me the heads up on this as we had started it before seeing them. 2 weeks later and we had our 2nd appointment today. We were so confident we had made progress so were shocked and devastated to find D has lost 2 and half kgs. Struggling to understand how & realise we have to be more vigilant and increase food intake & calories. She is insisting she has been eating & not purging. We have watched her as much as possible. Trying to focus on upping the stakes and staying positive. I am sure you have all been here.
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Enfys

Torie

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Reply with quote  #39 
It's great that you have been getting the meals and snacks in.  Yay team enfys!  It is always a challenge to figure out what the needed amount of nutrition is, but you will figure it out.

Quote:
Originally Posted by enfys
She is insisting she has been eating & not purging. We have watched her as much as possible.


I think you know this, but there is no point in listening to what ED says.  You can only trust your own eyes and ears, so it's great that you are watching her as much as possible.  I hope that always includes at least an hour after every meal / snack.

Keep up the good work!  xx

-Torie

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

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Reply with quote  #40 
Hi Enfys, that must have been a kick in the gut!

To loose 2.5kg in two weeks is not easy especially if you have seen her eating. I would give the nurse a call again and ask for her mid arm circumference (MAC) results and compare those two. If the MAC has reduced, then I would suggest more food and closer supervision. If not, it might be that your d water loaded or hid weights at her first appointment and that today's weight is closes to her true weight.

Think of you and best of luck!

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
tina72

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Reply with quote  #41 
Hi enfys,
I can imagine how you felt, it is horrible. Try to stay calm and look for holes in your net.
Is it possible that she hides food? Do you turn your back to her while she is eating for a moment? A girl in IP with my d was very good in hiding food quickly in her longsleeves directly under the eyes of the nurse.
Is it possible that she exercises secretly? Do you sleep with her?
Is it possible that she purges under the shower?
Are there meals/snacks that are not proper supervised? If you are not sure with that in school, leave her at home for some time if possible.

Do not believe her one word. ED will ly the heaven is of green color. It is not her fault.
Like mamaroo said, it is also possible that she water loaded the first time and was never on that weight.

If you can exclude all this, then she has too less intake. Increase calories until you see weight gain. Some need a lot more than anybody of the team expected. Buy benecalorie if possible, that stuff is great!
Tina72

tina72

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Reply with quote  #42 
Hi enfys,
how you are doing?
I think about you.[wave]

Tina72
enfys

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Reply with quote  #43 
Thanks Tina72 I feel we are on a long journey and I have so much to get to grips with it's very overwhelming. We are not seeing the progress I would like but it is early days. I can see that I may have to change my working hours etc. to increase supervision and close the gaps. I also need to learn more about the meals I'm preparing and calories. I am adding in extra oil etc but we are all eating it so we are getting bigger while the daughter is getting smaller !
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Enfys

toothfairy

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Reply with quote  #44 
This is well worth reading. The illness is a steep learning curve and very dangerous. 
http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartA_Nov_2017.pdf


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Food is the medicine. Recovery is possible.
toothfairy

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Reply with quote  #45 
AND PART b
http://www.ceed.org.au/sites/default/files/resources/documents/CEED%20Family%20Tip%20Sheet%20Topic%202.pdf

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Food is the medicine. Recovery is possible.
tina72

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Reply with quote  #46 
Hi enfys,
if we can help you in any way, please ask.
We also gained some weight with d [wink]. Now I bought Benecalorie which is a small container with 44 ml and it has 330 calories or so and it tastes not like vanilla or strawberry so you can add it into sauces and soups and carbonara and pudding and scrambled eggs and porridge and....in that way we can add it only to my d´s plate and we eat normal food. It is quite expensive here, we cannot buy it in Germany, only by delivery from US. If you have the possibility to get that, that stuff is great!
Tina72
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