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emmaw

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Reply with quote  #1 
Dear all,
My D was diagnosed 4 weeks ago. It has been a very progression from restricted eating to admission to St. George’s in London,. She was there for 29 days and gained weight. We were discharged and have slowly gone down hill. She has lost 800g in the last 2 weeks. I feel like I can’t reach her. She is so angry especially with me ( I am the one trying to feed her). I know we are early on the road but I feel so hopeless and frightened for my daughter. She had changed form the most caring girl to a child I don’t recognize. I know it’s the anorexia . Terrified I will lose her.
deenl

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Reply with quote  #2 
Hi emmaw and welcome,

Quote:
Originally Posted by emmaw
I feel like I can’t reach her. She is so angry especially with me ( I am the one trying to feed her).

I so identify with this but we are quite a bit further along the road and I can assure you that the connection, affection and warmth comes back. But it takes an age. In the depths of refeeding the ED hated my guts. I walked into the room and my son would leave or turn his back, he recoiled as if burned if I accidentally brushed against him, forget about actually touching on purpose. If the meal was going really badly we had hitting, screaming and spitting. As his brain started getting the nutrition it needed the aggression faded away but the vitriol towards me got worse. It was almost like he needed a way to purge the nasty feelings he had and I was the safe target because he knew I was strong enough and I would love him no matter what. I reacted to the bad behaviour as little as possible in front of him. I felt that I was showing him how to express himself normally and by not making it a power struggle it was easier for him to respond without losing face - eventually. Of course by pillow absorbed blows and tears and the bathroom mirror almost cracked with the distraught/angry/scared/frustrated faces and gestures[wink] Edit: I came to realise that I couldn't obviously reach him but somewhere deep, deep down he felt the love. All I could do was refeed him asap. That is the only way we get our real kids back.

Quote:
Originally Posted by emmaw
She had changed form the most caring girl to a child I don’t recognize. I know it’s the anorexia . Terrified I will lose her.

My kid was so #$% by the malnutrition that he became almost totally non communicative, rocking, obsessively doing nothing but origami, hanging on to his sanity by a string. But with weight, love and time he's back and it is wonderful how much I savour the normal everyday occurrences. The chances are very, very good that this is what the future looks like for your daughter and your family.

So, the big question is how do you stop the backslide? Could we help you figure out how to close any loopholes?

Our learning centre can be found here. I also found Eva Musby's site and book incredibly useful as a starting point for figuring out the nuts and bolts of refeeding.

Our journey turned a corner when I found this site. We couldn't have done it without all the practical and emotional support I got from the parents here. 

Welcome again and feel free to post any specific questions you have.

Warm wishes,

D

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

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, 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.
Torie

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Reply with quote  #3 
i agree with everything deenl wrote.

Quote:
Originally Posted by emmaw
I feel like I can’t reach her. 


Oh how I remember that feeling!  In a very real sense, you CAN'T reach her right now because the monster ED is holding her brain hostage.  But in another very real sense, your real d is in there somewhere, and she is counting on you to beat this thing for her.  

Here's my advice:

Add canola / rapeseed oil wherever you can.  I was surprised to learn (here) that it disappears without changing the flavor or texture if you stir in in briskly to yogurt (full-fat), soup, sauces, shakes, rice etc.  A little experimentation will show how much you can add.  Butter both sides of the bread for grilled cheese.  Search out full-fat everything (yogurt, cheese, ice cream, etc.) and calorically dense breads, etc.  It takes a veritable mountain of broccoli to get enough calories, so using calorie-dense foods will make the volume more manageable.

I found this video by forum member Eva Musby incredibly helpful. 



Keep swimming!  xx

-Torie

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

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Posts: 297
Reply with quote  #4 
HI emmaw,
Welcome to this forum. A lot of us have been there and can offer support and advice. Please look up topics that you may find of interest. torie and deenl have great advice.
How old is your D? Are you doing magic plate? You prepare the foods (high calories- look up high calorie thread here- the most calories in the smallest "food"print) . Goal is weight gain. It will be hard. Let us know what is happening. There are so  many of us here that have been and are, where you are right now.

Yes my D was not the same loving girl when she was really ill.Ed really hijacks them. She has come back now - it has been a year since diagnosis. She is doing so well. Your D too, will come back. It does take time. The saying here is 'it is a marathon, not a sprint". We can help you with "putting on your running shoes, so you can take the first step of this thousand mile journey" 
One bite at a time, one meal at a time, one minute at a time etc...
It is slow and hard. We are here please let us know what you need. We are all "ears".

XXX
Mamaroo

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Posts: 272
Reply with quote  #5 
Hi Emmaw, so sorry to hear about your D.

You already got some great advice and I'll add what we did at the beginning.

Quote:
Originally Posted by emmaw
She has lost 800g in the last 2 weeks.

My d was in the hospital for 2 weeks to stabilise her. She gained around 2 kg, but was still only skin and bone. She was discharged with a meal plan, consisting of 6 meals and snacks. They also gave us ensures to give her if she can't (note not won't) complete a meal. Like your d, my d started to loose weight at home and I was convinced she would go back to hospital. I used incentives such as ipad time when she completed a meal (don't complement her if she finished a meal, ED will punish her for it) and gave her a small amount of money if she completed her mealplan for a whole day. Although she couldn't complete the meal plan initially, I gave her an incentive if she just ate more than the previous day, building up until after 7 weeks she was eating what was on the meal plan. Print out the mealplan for the week and put it up on the fridge, this way if your d knows what is being served, her anxiety will decrease. I've attached a sample one for your reference.

Sending you lots of best wishes!

Attached Images
Click image for larger version - Name: mealplan weekly.jpg, Views: 32, Size: 173.39 KB 

__________________
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 a year and WR 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.

toothfairy

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Reply with quote  #6 
Hi 
Here are some notes from another parent that I think are helpful, shared with permission.
1. You prepare meals

2. Do not allow your child in the kitchen during meal prep

3. Your child should not go grocery shopping.

4. Toilet before meal and no toilet for at least an hour afterwards.

5. If purging is suspected, use an open door policy in the bathroom, or have them count or sing whilst in there. And no flushing

6. Do not negotiate - whatever you serve has to be eaten

7. Use whatever leverage you have - phone, Internet, tv - whatever they hold dear is to be removed if they refuse to eat, until they have eaten. If they're older and are not financially independent, this is your leverage

8. Separate the two - Your child is not the ED

9. Detach yourself from the situation during meals. Do not get drawn into emotional discussions. THIS IS NOT UP FOR NEGOTIATION

10. Remember that your child wants to recover - the ED is stopping them

11. Your child needs your permission to eat. They need you to stand up to ED as they do not have the strength to do so themselves

12. 3 meals and 3 snacks per day (supervised) - do not deviate from this. Add time limits to the meals (as a guide/goal!). Ours (and the hospitals) was 30 mins for meals and 15 mins for snacks. In the early days this could extend A LOT. I made my Ds meal times the same as they'd be at school so that when she transitioned back to full time it would be easier and less anxiety provoking.

13. High calories are needed throughout refeeding with lots of full fat dairy. Some need as much as 6,000 cals with hyper metabolism, but the norm would be minimum 3500-4000 cals (for you to track not your child)

14. When they know you will not negotiate, I promise you will see the weight lifted from their shoulders... If only for very short periods

15. BE THE CAGE that keeps ED away from your child

16. When food is eaten be mum / dad again and have cuddles if they'll let you

17. 24/7 supervision - I slept with my D for 4 months - this will protect against them purging through vomiting or exercise. Many patients will exercise alone at night for hours on end when nobody else is awake.

18. All sport may need to stop in the early stages, and for those who compulsively exercised this could be long term.

19. Be consistent, consistent consistent!

20. Don't congratulate them after a meal or say 'well done' - just cheer inwardly! Likewise when (for girls) their period returns!

21. Learn from others. I found this website with stories of other parents journey through recovery to be extremely helpful - http://www.maudsleyparents.org/familystories.html

22. Recommended reading: 'Brave Girl Eating' by Harriet Brown

23. Be prepared for resistance, and lots of it! You will find your own way to manage this, but NEVER back down. Any compromise is a win for ED. Remember, you have to see the beast to slay beast!

24. Making decisions / choices is extremely difficult for them (painful to watch). This is true in areas outside of food too. If you've tried to hand over some control of a meal or snack and notice that they are struggling, that is an indication that it is too soon and that you need to be making those decisions for them.

25. Sometimes distraction helps during meal times. That can come in the form of games,TV, music. Whatever it is you control it and it only continues with eating.

26. Lean on us - you have 24/7 support here as FEAST/ATDT  is international

27. In some cases FBT isn't an option, generally if there are comorbids such as ASD and BPD (Borderline Personality Disorder) . It may just be that FBT needs to be tweaked, or that a different approach is needed. There are many here who have found ways to work around those comorbids or who can advise on an alternative approach which worked for them.

Hope this helps! Best of luck!

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
toothfairy

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Posts: 2,109
Reply with quote  #7 
Eva Musby has a great book that I would really advise you to buy.
Her website is also excellent with lots and lots of information.

https://anorexiafamily.com/

She also does telephone  private coaching as another option for you..



__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
toothfairy

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Reply with quote  #8 
Laura Collins also has excellent books and really great information on her podcasts.
She also  does private telephone  coaching for parents as another option.

http://www.circummensam.com/
 
__________________

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
tina72

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Posts: 926
Reply with quote  #9 
Quote:
Originally Posted by emmaw
Dear all, My D was diagnosed 4 weeks ago. It has been a very progression from restricted eating to admission to St. George’s in London,. She was there for 29 days and gained weight.


Hi and a very warm welcome from Germany. Sorry that you have to be here. You will find great help here, this forum is a lifesaver. It is great that she gained some weight in hospital. Did you get any help before discharge how to go on at home? Are you doing FBT? Magic plate? Please give us some more informations where your problems are so we can help you better.

Quote:
Originally Posted by emmaw
We were discharged and have slowly gone down hill. She has lost 800g in the last 2 weeks.


Discharge from IP to home is often a problem. It is important to take all meals and meal times to the home. She should not decide what to eat and how much. 3 meals 3 snacks. Does she purge or exercise secretly? If no I think you need to increase intake, she is not eating enough. She needs a lot of calories for steady weight gain. Try to ask questions about how to do that so we can help you better.

Quote:
Originally Posted by emmaw
I feel like I can’t reach her. She is so angry especially with me ( I am the one trying to feed her). I know we are early on the road but I feel so hopeless and frightened for my daughter. She had changed form the most caring girl to a child I don’t recognize. I know it’s the anorexia . Terrified I will lose her.


That is totally normal and in fact, you do not reach her at the moment. She is totally occupied by ED. She will hit you. She will throw things after you (especially plates). She will say very bad things to you. But that is not your beloved daughter. That is ED. If you keep refeeding and show ED that you mean seriously what you are doing, you will slowly get your d back. With every kg she gaines her brain recovery makes progress and you will soon see your nice, caring and happy child again. She is in there and she needs you to help her to come back.
It takes time. It might go worser for some time before it starts to get better. But you need to keep swimming. There is a light at the end of that damn ED tunnel, but you need to walk on no matter what happens to see that light again. You will get her back. Recovery is possible. Don´t give up.

Do you have a meal plan?
Do you know her target weight?
Is she blind weighed?
Do you have a plan to tackle fear food?
How can we help you?

Tina72
scaredmom

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Posts: 297
Reply with quote  #10 
Hi, 
May I add to TF's great list, that for #4 a #4A: that when eating, no clothes with hoods, pockets. Try short sleeves,make sure not tucking food into pants, short pants.Take the dog away so that the dog won't be fed. 
I remember one parent said that the child put food in the hoodie and I think actually poured a smoothie into the hoodie to hide it!!
And to add to #5, 5A: Search the room for uneaten/purged food. In containers, drawers, socks, jars in the room. On a shelf, around the corner. Out the window etc... I think you know what I mean.
"sniff around"the toilet sink...

You got this and we have your back.
XXX

believingbody1

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Posts: 19
Reply with quote  #11 
I would like to also add, and please don't think that I am proselytizing, but prayer has helped immensely. Even if you have not done it in awhile, I find it helps strengthen my wife and I. D even let her mom pray with her a few nights ago. That was a win and it seemed to help calm D. We have always done it before meals, but it seems like now it helps set a tone and prepares us for what we may encounter during meal times. 
Mamaroo

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Posts: 272
Reply with quote  #12 
Hi, I like to add to Believingbody's suggestion of prayer. I found the following very helpful when I wake up in the early hours of the morning, with my heart racing. I would say: "thank you for this, thank you for that", listing everything I could think of. "Thank you for our treatment team, thank you she ate her snack today, thank you for a soft bed, thank you for a roof over my head, thank you for understanding friends, thank you for ATDT". After a couple of minutes of this, I felt calm enough to fall asleep again. 
__________________
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 a year and WR 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.
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