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future

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Reply with quote  #1 
Hi everyone, I've been reading this site for the last 7 weeks, since my daughter was diagnosed with anorexia. She's been off school since then, and we've been having FBT, and had Multi-Family Therapy.
Her weight is increasing well these last three weeks in particular, but to get there is exhausting. I feel like our entire house is anorexic, as her siblings have to share every meal listening to us saying whatever it takes, the timing, the threat of fortisip, the crying, the hair pulling out, the shaking...
I just can't see any light at the end of the tunnel. Right now, even if she carries on like, she still needs me with her for three snacks and three meals every day. I can't see how she goes from this, with her not being able to eat outside the home, not being able to eat in front of friends. How does she go from this to ever being able to go out the house for even half a day, let alone go to school?
She doesn't believe there is anything wrong her still. 
The only reason she eats is because we are lucky to live very very close to her treating hospital, and we have had to take her in every day on occasions to eat her meals there, as she refuses fortisip at home, so the threat of knowing that at the hospital they can 'make' her eat is the only reason she does eat. She has no motivation to eat for any reason other than not to have fortisip. 
She's on olanzapine 2.5mg, for a week now, but I still don't see any reduction in the stress she suffers at meals, and the increasing number of rules she has about meal times, and who has to say what, and what can't be said.
She's 12. I think the illness started 'gently' in September, with an interest in healthy eating, and escalated suddenly around mid-October half term with purging by exercise, and very very little food being eaten.
Sorry such a waffly post, just feel like I can't see an end. I read about Stage 1 FBT being 10 weeks till Stage 2, but I can't see us ever moving beyond this. If I look away during a meal she will try to drop food, hide food etc, so how can we ever move beyond this?
Sorry to be so negative, but I can't feel anything but negative. 

scaredmom

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Reply with quote  #2 

Hello future,

I welcome you to this forum where we all understand what you are going through. You are truly not alone. I am surviving this only because of the warm support I get here.
I wish to offer you the same. My D is 12 too and diagnosed a month prior to her 12 year birthday. This is just the beginning for you and it is HARD HARD HARD! But I am here to say that through your vigilance in helping her eat, it WILL get better. As her nutrition improves her mind will too. It just takes a long time. We refed for 6 months to get to weight restoration (WR) from March to Sept and then that is when I say things lighten up quite a lot. Right now just feed her. School at this point may be out of the question. That is ok. My D was out of school for about 4 weeks and did fine. It is ok that the hospital can "make her" eat. and she will learn that you will require her to eat too. What we found was that the hospital helped us establish that eating was never a choice at home or not at home. It was hard, violence and crying and I was so scared too. It took about 4 months for that to settle down for us.

As for her not understanding that there is nothing wrong with her, don't try to reason with her. She is malnourished and not well. Just feed, feed feed! Her mind will follow as her body heals with food.
 

Please search for high calorie foods here so that you may feed her smaller amounts but high calories. I like to say that we are trying to decrease the "food"print. It is scary to eat and if it is a lot of food that can be overwhelming. We started with ++ cream and oils in everything I could, so that the amounts were not too scary for her, then as her mind started healing, now I can really give a lot of food without her panicking.

Keep asking questions, there is always someone here to help you.

It is really hard for the siblings. My D has an older sister 19 yo and an older brother 16 yo. I found sometimes having my H deal with the Ed-D while I cooked helped me a bit too. Call in the troops if you have to, to help you feed or occupy the other siblings too. They need a break from it a times. As for the timing of stages, please don't focus on that, it takes the time it takes. Just one day at a time and one meal at a time helped me to just get through and not feel so overwhelmed.

As for your comment on her rules. Her ED is trying to fight you with the weird rules. Do not "listen" you can acknowledge and also add in that " in this home, we are all free to do/say what we need to etc.." something to the effect that she can speak for herself and others may speak for themselves but she cannot speak for others. My D said that I did not have rules in the house??? Always said that I was terrible etc..  So we let her rant and kept everyone safe and just fed her through it. It is so hard not to feel hurt by their words and behaviours and hard to not take it personally. It helped me when those here on the forum said "It is not your D it is her ED that is saying those things". I was told that she would come back to me and she did!! Your D will come back too.

I cried buckets of tears and these wonderful people here at FEAST kept me afloat and still keep me afloat with their knowledge and experience and hope.

XOXO

 

future

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Reply with quote  #3 
Thank you so much for your reply. I can't believe how hearing one voice that has shared this makes such a difference. 

What you wrote about the rules is helpful, and I will say that to her. I need a set phrase to say, because I find myself trying to argue with each rule, or follow some, and it is like that game where you hit things coming out of the ground, and for each one you hit, another one appears.

How is your daughter now? Thank you for being so honest and open in your sharing.

I dread in my heart being here a year from now, and no change. I feel utter terror at this.

Thank you x




sk8r31

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Reply with quote  #4 
Hi future,

Scaredmom has given you some great advice and support.  I can add that it does definitely get better with time and weight, and as difficult as things are at present, there is true hope for recovery and a life free of ED thoughts and behaviors.

This is the time to 'call in favors' from extended family, your closest friends or a faith community.  Perhaps you can have others take the siblings out for time away; fun activities or meals.  It helps for them to have a break from the challenges of meal/snack times at present.

Maybe you could have someone prepare some meals, or you & h can spell each other off from time to time to get a break.  Take some time each day for yourself....self-care is critical to maintaining your own physical and mental health, so you can manage for the long haul.  Even a short walk around the block, or a bath, a cup of tea or coffee with a friend...whatever will help to recharge your batteries.

I felt exactly as you do in the early days.  However, our d is happy, healthy and living a life that is rich and rewarding....it truly does get better with time and effort.

Hang in there; 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
scaredmom

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Reply with quote  #5 

Hi again,

You asked about my D. She is doing really well now but it was so hard and felt sooo slooooow. She eats all that I plate for her. We go to restaurants (since July when we went to a cottage for a few days) and she does pick her "comfort foods" Ie steak, or pasta but last week, I told her a few days prior to going to the restaurant, that I wanted her to choose differently ie pizza and she did it! My D seems to feel better when I tell her that a challenge is coming. Ie last weekend I told her " on Saturday or Sunday, you will have a grilled cheese sandwich for lunch". When Saturday came I just said that I was making it and she ate it!! I can still see some anxiety over different situations or foods, but she knows as I have told her so many times that "I will help you- it will be fine- I am here for you- you have done some hard things etc..." It took me a long time (I think 4 months) to get comfortable with the language I needed to use with her. Any time she says that she does not want a certain food, I make it and she eats it. In fact there is a running joke, that she knows when she says "no more" to a serving of food or drink I will add another spoonful or more juice to the glass and she goobles it up. It really feels good to see. 
You will get there too. 
Keep going. We are rooting you on!




seaglass

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Reply with quote  #6 
Hi there,
I could have written your post a few weeks after my d was diagnosed. It's so so incredibly hard and scary and never ending (or so it seems at this stage). We all get it and we're all here to support you.

First of all you sound like you have good support in place and the added help of being near hospital for meals when needed. That's great. Hang into that.

You are also doing what you need to do and requiring her to eat her meals and snacks despite her pain and anxiety. We all know it's tough on all of you.

I used to torture myself by trying to work out how many weeks/months we'd have to go through but found it easier in the end to just get through each day, each week and to try to find ways to keep on keeping on.

I swallowed my pride and social anxiety to
Call in the troops. I rallied family and friends and even though the support was not always with them being here helping with day to day the texts, phone calls, care packages and support kept me going. On dark days I used parent helplines from Beat and ABC (sometimes just to cry, rant and be listened to). All helped a little. Further down the line I had weekly counselling just as a space to talk and give me coping strategies.

It's hard as your d's 'ED voice' will be loud right now and doing all it can to resist eating and gaining weight. She won't admit there's anything wrong. I found it useless trying to debate or discuss any strange rules and asks. I just told my d I loved her, I would always be there.

I also built in little things to make our days easier. Lots of baths, tv, crafts, jigsaws... my d missed a year of school and is catching up fine now. Put that to the back of your mind until she's recovered enough.

Try not to second guess the path ahead. Things DO get easier with food and time and lots of perseverance. Keep going and just have hope and faith. You can sort everything as the time is right (e.g. Staged return to school, school lunches with you or a ed nurse etc, etc...). Try not to rush ahead worrying (know that she easier said then done) but take each day, each week and get as much suppprt as you can to keep going.

This is the hardest thing I've gone through as a parent. It's hero parenting, super parenting. It's so hard.

Have you read Eva Musby's book or watched her videos? They help.

Keep posting here. This forum is so supportive. We all understand. Xx
rose08

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Reply with quote  #7 
Hi Future. Huge well done on getting to where you are now.  The 1st few weeks can be so intense (and incredibly demanding on the entire family) and you are doing an amazing job. 
I am a mom of a 12 year old with anorexia, diagnosed in June this year, so we are only a few months in.  I too felt things would NEVER improve, she was adamant that NOTHING was wrong with her, in fact, we were just making her life so much worse by trying to feed her... and she didn't want and didn't need our help.  We were all just stunned, our happy, creative, healthy child was gone, and in her place was this irrational waif who felt that mortal rules (eating, drinking etc) just did not apply to her. 

A lot of it was cloaked in a "healthy eating" scenario, and wanting to be vegan and live a "clean" life with exercise suddenly being her most favorite pastime ever.   We are still working on food flexibility around fear foods (chips, white bread, pizza etc) however 3 meals and 3 snacks a day have brought her back to us again.  From being a virtual recluse, traumatic meal times, non-communicative with some pretty bizarre behavior at times, you would not know this was our child a few months ago if you were in our home today... 
It does get better.  Keep at it, it really works and the good days start to outnumber the bad days, and soon the bad days are fewer and fewer.  I was told by a wise person on this forum that this is a marathon, not a sprint, and to pace myself - it does take time and endurance and there are going to be "those" days... I am in the process of seeking help for myself now that my daughter is venturing into stage 2.  I still worry myself sick, and will always probably be hyper vigilant but I try to remind myself that this is a chronic disease as is diabetes or IBD,  but their medicine is food. The ultimate goal is for my D to live a full, happy and healthy life - my mission is to get her there with compassion (sometimes easier said than done) and a good dose of fierce mom determination which I only really discovered I had when this illness threatened our family... you have it too, we all do and it will get you through when you most need it.

They are still young, there is much to be hopeful for. xxx Sending love from South Africa, Rose xx   PS.  Please feel free to ask any questions if you need advice re meal ideas etc - this forum is amazing, you are in the right place.
future

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Reply with quote  #8 
Thank you all so much. I have cried reading all your replies, but sort of in a good way. 

I am so so grateful as pretty much all the time it feels so isolating, and then I pop out to go in a shop and chat and laugh away with the people in there, and act like my life is normal, and really my laughter is one step away from crying.

I have taken away from your messages that there is hope, and that I have to do it one meal at a time, but it will not always be like this. You've all said things that are so familiar to me - that I look at pictures of my daughter just a few weeks ago and her 'normal' life which was so full and busy and amazing, and then I see what her life has become now, and she is at times unrecognisable from the care free girl that she was.


The more she tells me about what has been going on in her mind for the last few weeks in the run up to when we realised there was a problem, the more I see that I had no idea that she had started creating exercise rules and food rules, and had started seeing herself as no good at stuff, when I thought our household and family ethos was all about never needing to be the best, being happy. 

Thank you all, I feel like I have some more fuel in my tank to remind me that others have been here before and have got through this. 

Thank you 



tina72

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Reply with quote  #9 
Hi future,
a warm welcome from Germany and sorry that you have to be here.
I remember well feeling like you did at the beginning. You think how can that ever get normal again and how can she ever live a normal life again. Be sure, she can. It will take a lot of power and time, but it will be better.
First: great that you found FBT and that you started refeeding. But forget these numbers of weeks on the FBT plan. That is very individual and it will take longer than you expect now. In our case phase 1 was about 3-4 months and phase 2 is up to now (12 months in refeeding). My d is 17 and we are doing 3 meals 1-2 snacks at the moment (depending on school time (2 snacks) or holidays (1 snack). She is plating 2 meals and the snacks herself (and that is working well) and I still plate lunch. We are working on eating outside (no problem if she knows when it will be and where and can look at the menu online before to choose something) and on fear food (not much left on our list). But she has still problems with portion sizes and quick changes in plan.

What helped me a lot was to mark the days on a calender. I marked good days in green, normal days in yellow and bad days in red. At first I thought there are only bad days but then I saw that there were some yellow days in my calender and then some green ones and I realized the progress. The first steps are so tiny you don´t see them with all that worry. Mark the day when she first eats a meal without complaining. The first fear food. The first day without body checking. The first ask for a second plate (yes, that will come).

The olanzapine might not work as long as she is underweight. Many medicines do not work in that state. The best medicine is food, food, food. With a big amount of fat because the brain is made from that and needs a lot of fat to recover.

When my d was in IP at the beginning of this last year they told me it could take 7 years and she may need to live in a closed psychiatric ward. She was not in school for 3 months and they told me she will not be able to finish school and to graduate. I didn´t want to believe that. I found FBT and these wonderful people here and now she is back in school (same class, no problems), she has a social life with her friends again (including eating outside home), she did her driving licence in summer and is graduating next spring and dreams of going to university next october. So please don´t give up. You will get her back and everything will be o.k. with her. It will take time because she is very young and still growing and you will need to feed her extra for a long term, but she can recover and live a totally normal life.
Try to believe that and look positive into the new year. You are her mirror. If she sees you are not afraid of ED, that will make her stronger. If she sees you have hope, she will get hope, too.
Keep on going. You are doing the right thing.
And yes, it totally changes everything to talk/write with other parents who know what you are talking about. This forum saved our lives.
Tina72
mjkz

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Reply with quote  #10 
Future, ten weeks in Stage I is ridiculous.  Most kids or YA are nowhere near ready in 10 weeks.  Maybe ten weeks from the time they are fully weight restored, tackled all fear foods and going out to eat in restaurants and with other people-now that I can see but my daughter had to double her body weight which took awhile and then had so many food rules and restrictions that we spent years in between Stage I and II.  Just focus on one meal at a time, one snack at a time and don't rush things.  This is a marathon and not a sprint so you get the food in however you can using whatever leverage and motivation you can and for now until she is weight recovered and starting to eat with  people and eating all foods-just plan to be plating it all and not looking away.  There is no one tried and true time course.

One of the things I did with my daughter right from the start was that she had to be emotionally in control.  We had a room where she would go when the melt downs started and the shaking, hair pulling, etc.  I know not everyone has that luxury but we made it a place to cut down on stimuli until she could control herself.  She never got out of eating by going there but it gave her a place where she could focus just on calming herself down.  It helped all of everyone's sanity.
Foodsupport_AUS

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Reply with quote  #11 
Welcome to the forum. You have made an amazing start on dealing with you D's illness. Seeing that it will get better when it is all so horrible at the moment is really hard. You probably don't want to hear this, but many people have found even with successful FBT that it takes way more than 20 visits, and phase 1 does take longer than three months, however you are in one of the worst phases right now. At some point, her brain will realise that no matter how much she protests you will insist on her eating. It will come slowly, so slowly that you may not even see that transition.

Olanzapine is a medication that some people swear makes the anxiety less for eating. For my D it didn't help at all, long we had to stop it because of day time drowsiness.

You are doing hero's work here. At the moment it feels thankless, but when you do see your daughter on the other side of this illness, you will know how far she has come.

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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.
Torie

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Reply with quote  #12 
You are doing a great job, Future!   It is hero's work getting the weight back on, but you are doing it!  It is exhausting, scary, miserable to go through this, but in the end it is so, so worth it.

Quote:
Originally Posted by future
her siblings have to share every meal listening to us saying whatever it takes, the timing, the threat of fortisip, the crying, the hair pulling out, the shaking...


Yes, it sucks for the sibs, too.  I wonder if there is a way to shield them from some of this - friends or relatives who can invite them for a meal or two, or maybe they can eat before or after ED-d.  One silver lining is that your non-ED kids get a superb demonstration of your commitment to your family.  I told my non-ED kids I would always be there for them, too - as long and intense as it takes.

In some way it is like having an infant - the same exhaustion and intensity; can't even take a shower without worrying what is happening in the other room.  But also the same is that it DOES end, you do power through, and - looking back 4 years later for me - you kind of wonder where all the time went.

You can do this.  You ARE doing this.  Keep swimming.  xx

-Torie

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

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Reply with quote  #13 
Just a quick note to say thank you to everyone - your words and wisdom and support powered me through another day.

Wishing everyone a good 2018. And I mean GOOD!!!!!!
FaithKeepsMeGoing

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Reply with quote  #14 
Hi future!  Your post really sounds really familiar- 8 years ago my daughter started with "healthy" eating and quickly descended into exercise purging and eating next to nothing.  Same time of year, even.  She was a small 14-year-old to start, and lost almost 20 pounds.    I was so scared when I realized how sick she was, and every day was so hard, I wondered how I'd keep going. She'd always been my bouncy happy girl, and I mourned for the girl she'd been. It took about six months to get past the danger point;  unfortunately, it took a much longer time to get her completely weight restored, but at least life was not so terrifying once her weight returned to where she'd been before the eating disorder began.

You can do this!  You're already doing a great job, and your daughter can get better.  It's just that the getting there is so hard.  [frown]  You've already found out that you can find a sympathetic ear, lots of understanding, and good advice here.  Please keep coming back - this forum was my lifeline when my daughter was ill.

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The Irish tell the story of a man who arrives at the gates of Heaven and asks to be let in.  St. Peter says, “Of course. Show us your scars.”  But the man replies, “I have no scars.”   St. Peter shakes his head and says, “What a pity. Was there nothing worth fighting for?”

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