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muminuk

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I’ve only just joined this forum but have been reading posts on here since d became ill 6 months ago. My d is 16 yrs old and very rapidly found she couldn’t face food or drink when going through a stressful time. No body image issues. Lost weight very rapidly and went down to BMI of just over 10. Admitted to specialist eating disorders unit as inpatient for 3 months and discharged home to continue refeeding with Outpatient eating disorders team at BMI of 15.0. Diagnosed as atypical eating disorder.
All went well at first and d followed meal plan and times. Gradually her times have gone more and more out of control and it is now virtually taking all day to do 3 meals and 3 snacks. She has lost interest in everything so there is nothing to bribe her with. She is crying a lot the last few days. Her BMI is now 16.5. If I prompt her she gets even more upset and everything takes even longer.
She doesn’t want to go out anywhere. Is not keeping in touch with friends. She won’t even look at the TV.
Has anyone experienced this and how can I help her to get control of times back?
Thanks for your time.
Foodsupport_AUS

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Reply with quote  #2 
Welcome to the forum, sorry you  have had to find your way here. I assume from your username that you are in the UK. 

This is a tough illness to deal with. When there is severe self isolation and low mood it can be even harder.  

Her mood is likely to be an issue in part as the weight goes on, they find things increasingly distressing. Rather than stopping part way, it is essential that it goes on faster rather than slower. Following any sort of meal plan can make it much harder as there can be a tendency to get fixed on it. 

If she is unable to complete meals in time there are two options, reward, or consequence. What is she doing other than eating? If her mood is so poor that she sits, does not communicate with anyone, does not activity whatsoever it is possible she needs more mental health support than she is getting. If she has other activities that she is doing then there can either be more of those, or consequences - withdrawing activities, adding more food for not completing. When my D was at her most ill she was isolated herself in a similar way. It was up to me to add any activities for her, I arranged crafts, card games, board games, small outings like movies. It helped to pass the time. She would not have voluntarily done anything. 

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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.
tina72

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Reply with quote  #3 
Hi muminuk,
welcome here and great that you joined us. It will help you a lot to come here to vent and to ask questions.
Refeeding is a very hard time. They seem to be anywhere far away and you think you cannot get through to them. But that is not the case. Your d is behind that ED and you must search her to find her. What was she interested in before ED? Try to find something that can distract her. Sometimes a short walk outside in the fresh air or a funny book to read laudly to her can help. Playing card games is an idea or colouring a book. My d liked to do sudocus or puzzles with me together. She didn´t want to be alone and was with me 24/7 which was exhausting.
My compliments that you got her from BMI 10 to 16,5 in 6 months, that is great. I experienced that it is getting harder coming near target weight. That was extinction burst in our case. Try to be confindent and don´t lose hope. It is getting better when the brain is nurished enough and is healing.
I wish you a merry christmas and send you a huge hug from Germany. Next year will be better, I am sure.
Tina72
muminuk

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Reply with quote  #4 
Thankyou so much for your replies.
D has lost interest in everything. I have tried to suggest different activities but she doesn’t want to do anything. She isn’t communicating with us unless she really needs something and then it is usually with hand gestures rather than her voice.
She is getting upset because she knows everything is taking longer than it did but she can’t bring the times down because she is finding it so much harder at the moment. I am trying to prompt her but sometimes this seems to make it worse.
D has always been very slim (all her life) and I do wonder (and hope) that this all may be due to her reaching extinction burst weights.
Because of the Christmas holidays we won’t be able to speak to any professionals until Wednesday.
Foodsupport_AUS

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Reply with quote  #5 
If the food is going in, the times are less of a concern, however trying to engage her in other activities is important. Certainly focusing on the number is probably unhelpful.  Rather than asking her if she wants to do something, ask her to help you do something. For example consider creating a craft project, or even get her to help you do something mundane like fold washing, clean out a room. This then creates an opportunity with some meals that when she is finished there is something to move on to. 
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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.
sk8r31

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Reply with quote  #6 
Hang in there muminuk.  It's hard not to feel overwhelmed and at wit's end when you are dealing with such challenges.

As Foodsupport mentions, you may have to plan activities for your d, or at least have distractions going on around her...funny videos,  card games, etc.  She may not be able to participate, but having some activity around so she is not isolated is important.

You have done so well; try to remember that things definitely WILL get better with time.

Sending warm support,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
eternalhope

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Reply with quote  #7 
Thinking of you muminuk. It’s so difficult, but you are doing a great job. Hang in there. The suggestions above- taking activities to her may get her more engaged.
muminuk

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Reply with quote  #8 
Thankyou so much for all your advice and support. It’s helped me a lot.
I will take it all on board.
Mamaroo

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Reply with quote  #9 
Hi Muminuk, my d was like that as well. We had hospital appointments each week and I tried to organise something around the appointments. I would say: "Look, what a nice park, lets have a walk there" or "I forgot to get milk, lets quickly stop at the shops" (I would put her in a shopping trolley, when she was still very underweight). It was a way of bringing life back to her, to show her what ED too away from her. Hang in there, keep on feeding. Have you tried higher density meals, which look smaller, but packs a big punch? It might help her getting the food in faster.

Best of luck and sending you many hugs!!

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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.
muminuk

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Reply with quote  #10 
Hi Mamaroo, Thankyou so much for your suggestions. We also have weekly appointments which are getting very hard to get to as we are constantly trying to keep up with the food she needs.
We are trying to do high density foods which is so hard as she is very rigid in what she can manage.
Have had a very bad morning this morning I’m afraid. It took 2.5 hours to get her to even agree to breakfast and then, in the end, we had to substitute it with fortisip (which we haven’t had to do before) which took another hour to get through.
She usually absolutely loves Christmas but won’t get involved with it at all this year - think that maybe deep down this is making things even more conflicted for her.
Thankyou again, it’s so great to get such wonderful advice and support from people. Makes me feel able to carry on.
tina72

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Reply with quote  #11 
The problem with Christmas is that they think they are so bad and they deserve nothing, no gifts, no nice meal, nothing.
I love that idea from foodsupport to ask her for help, because my d in her bad times liked to do something for us because she felt so ashamed and wanted to give something back. So think about little things you can ask her to do that are not around food. Maybe she can bring something into another room or give water to the christmas tree or decorate something.
Try not to ask her for activities but make it a fixed plan. Try to say: we are going for a walk in 10 min, please get some warm clothes on.
Try not to ask decisions from her, she is not able to decide anything in the moment.
If she doesn´t talk to you don´t think she doesn´t want to but maybe she just has no power left for that. I am sure that she wants you to be there with her and sometimes she might let you give her a hug. Just give her a sign that you are there for her and do some distracting things around her. Watch TV when you like or do puzzles or colour a book at her side. I am sure she will look at you from time to time and maybe after a few days she will do it with you. Try it over and over again. It takes a lot of time but she is still there and she will come back.
Tina72
mjkz

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Reply with quote  #12 
Quote:
It took 2.5 hours to get her to even agree to breakfast and then, in the end, we had to substitute it with fortisip (which we haven’t had to do before) which took another hour to get through.


You are wasting 2.5 hours.  She doesn't get to agree to breakfast.  It is an expectation and don't persuade.  If she won't come to the food, then take the food to her.  I told my daughter she had to do a spoonful a minute and if she couldn't do that, then I took the spoon and fed it to her. If she refused and her time ran out, she got a supplement and had 15-20 minutes to drink it.  It won't work if you are trying to persuade her to agree to meals and snacks.  Meals and snacks are expected and she goes to the food or it comes to her.  

I found that my daughter would eat if other people were around so I started inviting her friends over for meals and snacks.  Use peer pressure in a positive way.  There was no way her friends were going to sit there for hours for a meal so they would push her to finish so they could hang out together.  Worked really well during her slow periods of eating.
BattyMatty_UK

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Reply with quote  #13 
It is common for young people to withdraw socially when they are developing an eating disorder - it happened to my son who was previously quite sociable and popular. And this is just one of the changes that can take place...

Bargaining with the ED about meals doesn't help, really, as mjkz says above. But I know how difficult it is to get them to 'just eat'. Check out Eva Musby's videos on YouTube which have some helpful tips for getting a child to eat.

xx

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Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
Seabird

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Reply with quote  #14 
Lack of desire to participate in activities has been a central feature of my son's developing illness, and to a large extent this is still the case, so I've had to work around this and come up with a compromise solution.

It seems many youngsters with RAN, like my son, are withdrawn socially. It can be prolonged.    This can put a strain on care-givers and make it difficult for wider family to offer support.

What are your own expectations about participation and socialising?   It may be that things you take for granted as being enjoyable, are not rewarding for your d.  or may raise anxiety.

Without aiming too high too soon, can you build in a basic level of social interaction into your d's day / week, by small outings - park, pets, library, morning tea picnic (when she is ready for that)? 

Definitely encourage your d. to try to spend time on activities involving drawing, painting, writing, reading, play with pets, music or whatever she has shown interest in before the illness.  

I believe it's ok even to have big picture books in front of them during the meal, if looking at their favourite artist/musician/skateboarder/whatever can take their mind just a tiny bit off the food (although this is not an excuse not to eat). 

We as caregivers could really use a "priority list" - a list ranking the most important things to focus on during recovery.   Re-feeding, nutrition and weight restoration is obviously the big No. 1.   

Learning strategies to deal with the negative emotions, anxiety, self harm and despair is also important, and am sure this changes through the different stages of recovery.  

So I think we have to be creative and look for little opportunities to keep up social interactions through daily activities, whatever works then make a note and do this activity again.  Just a small distraction can help a lot.  With my son, even talking with him about the cat or dog's antics, seemed to help his anxiety and bring smiles to his face.  His cat was a great support to him.   

It has taken many months & years for my son to develop the confidence to embark on career training & studying, but the important thing is that he keeps making progress.   He has just successfully completed an 18 week study program, including group work, giving presentations, and being interviewed by course administrators for the study program he has chosen.  

Little steps ... just keep your spirits and determination up and keep supplying the right energy, try not to join them in their despair.  Over time this will make a huge difference as they will see that you don't let the ED win, you are there for the long game.  

Also totally agree with BattyMatty - be very determined that you have the meal plan covered, and all your d has to do is eat, and that she must. Way too early for food choices and discussions over what/when/how to eat.  

Even now, when my s eats with me, I will normally prepare the food in advance and just set it before him, including things he will comfortably eat and one or two things that are new/different.  But i don't discuss it much, just say "here's this today" and he eats it right up.  He trusts me after all these years of me not giving in to the ED.

Best,
Seabird






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Mother of 20 y.o. male diagnosed at age 16 with RAN, exercise compulsion, anxiety, depression & SH, FBT 4-5 mths to WR, WR now 3 yrs; suicide attempt 4-6 wks after WR,  IP 4 weeks.  Steady progressive recovery over past 3 years including support from psychologist on general wellbeing. Slow steady steps to success!! 

When your last bow is broken and your last arrow spent, then shoot, shoot with your whole heart
 [Zen saying}
frazzledmum

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Reply with quote  #15 
mjkz, or anyone else, you mentioned that if your d didn't eat her food, you would give her a supplement and she had 15-20 minutes to drink it, what did you do if she wouldn't drink it?
mjkz

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Reply with quote  #16 
Quote:
what did you do if she wouldn't drink it?


She was on complete bed rest for the first refusal.  That meant laying on her bed all day or on the sofa where I could see her with no internet, no TV, no reading, no nothing and I do mean absolutely nothing.  I told her it was to make up for the calories she hadn't taken in and it was.  It also made refusing to eat in a timely manner or refusing her supplement a very unpleasant situation.  Boredom was a big thing with my daughter and she would try to avoid it at all costs.  That would last until her next snack or meal.  If she refused a second supplement, she went back to bed rest or to the ER if it was after two major meals or snacks.  She then saw her therapist first thing the next business day or her physician and she was evaluated for a higher level of care. 

Later when her weight got really low, any meal refusal and we headed to her physician's office for a NG tube and the amount of supplement she was given was high in calories-like around 2000 cals per supplement and she knew that.  If it was after hours, the ER would tube her. Some days we were at her physician's office twice a day and in the ER after that but they made the sheer number of calories in the supplement so high that it only took a day or so and she was willing to eat at home.
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