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sunshine1974

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Reply with quote  #1 
Its been two weeks ( I think) since my daughters period has returned.  It had been almost a year since she had one.  I posted two weeks ago sharing how excited I was and her excitement was short lived.  To her it was another tie to the ED cut.  
Now two weeks later she is refusing to eat breakfast (first time in months and months).  Last night she came home in tears from her dads because she got a stain on her new pair of expensive shoes.  She also told me through tears that she cannot continue to go to school full time, that it is too much for her.  
She spent some time at her friends house on Saturday (three of her friends were there) and the group of girls decided to order out for pizza.  My d started texting me asking me what she should do, if she should come home or stay.  She wanted to stay because she was having a good time.  I let her stay but I am not sure if she should have.  She's been even more off since then.
She had pasta at her dad's house and started texting me immediately, panicking, shaking and crying that she just ate pasta. [frown]
I feel like she is slipping backwards.  I am at a loss. 
This mornings refusal to eat breakfast caught me off guard.  I still had to drive my other daughter to school.  I tried the 'we are not leaving until you eat' and of course she wouldn't eat.  Then I told her that I would get my mom to come sit with her until she ate so that I could take her sister to school.  But my mom wasn't home.  I then realized that my daughter just wanted to stay home... it felt like a battle of the wills.  I ended up sending her to school without a complete breakfast. [frown]  I feel like I failed her.  I was so stressed out in that moment, I did not say helpful things.  And she reminded me that I was supposed to be 'supporting her'. 
I'm not sure I have another year in me....we've been doing this since Feb and she is still not weight restored (basically because I was floundering and didn't have the info that I have now thanks to this site).  I feel disappointed and discouraged.
HateEDwithApassion

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Reply with quote  #2 
This disease is really hard. You will not do everything perfectly, every time. Goodness. You are human. Beating up on yourself actually takes away energy that you badly need to fight the ED - and it's just too hard on yourself. So please - be kind to yourself. 

As far as no breakfast, no school... that didn't work for my D either as she didn't like school or much else when really sick. Today's breakfast is done. You can't go back but you can prepare for tomorrow's breakfast and beyond. Can you have your mom on call to drive your other D and you stay home with your ED D?  Is there a possibility that full-time school IS too much right now? Would she be better served taking time out of school right now? Lots of families do that, so you could hear from others. We also had friends who enrolled their D in online school for anxiety reasons and she did very well and graduated on time. All that to say that even though, today, it seems that you want to stay with the program the way all other families do, you may want to explore other options. I wish we had when my D was younger - I was in such disbelief that her life wouldn't follow the normal path, even if it was more bumpy. It's ok if it doesn't. Believe me - health is most important.

__________________
17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
EDAction

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Reply with quote  #3 
Hi sunshine1974,

I agree with HateEDwithApassion.  Please don't beat yourself up.  We all make mistakes (hand raised right here as I sit at my computer).  Please be kind to yourself.  As I've often read on this forum . . . consider what happened "feedback, not failure".  Learn from it and think about how you'll prepare for or handle it next time.

It took us well over a year to get our D to WR.  The target goal changed a few times.  Looking back I wish we had gotten there faster, but we didn't.  It's been about 2.5 years since our D was diagnosed and we have been in a really good place for the last year +.  There is still work to do.  But we all have our lives back. 

Do you have professional support?  From scanning your previous posts it sounds like your D meets 1x/month with a psychiatrist.  Do you have an ED professional you trust who you can call on weekly to discuss how things are going and ask questions?  Someone with experience to help you formulate a plan?  Our D's ED psychologist has been helpful to me throughout.  There were times that I questioned her or got frustrated with her (she makes mistakes too [smile]), but overall she's been an invaluable support.  

Thinking of you.






EC_Mom

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Reply with quote  #4 
Agreed, no self-flagellation allowed here. I did some big blunders and said some unkind things. This illness takes us to limits, and beyond.

You might consider that this is a "setback" and not a relapse. Can you tighten up the holes here, as suggested above, buckle up for just a few weeks of difficulty in hope that things go back to where they were? Sometimes ED tests our resolve, and we have to recalibrate. School or no school, whatever works best for feeding. Same with everything else. You are focused on this one thing, all the rest comes later. 
tina72

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Reply with quote  #5 
Hi sunshine1974,
we all did things we regreted later and said things we shouldn´t have said. You are human and you are doing your best. Sometimes you have to set priorities.
The big question for me is why she didn´t want to go to school. Has something happened there? Has somebody said something to her or did she feel uncomfortable?
Or is it ED lurking back to see wether you are fit for fighting?
In that case it would be the easiest way to ask someone to get your other d to school and sit with ED d to have full breakfast.

In case of the first thing, that she doesn´t want to go to school you should ask her why. Can you make an appointment with her teachers to see if it is really too much? Can you get her schedule a bit down? My d went for half days a couple of weeks until she was fit to go full schedule again.
I think school is important, not for the lessons and the wisdom, but for social contacts. It is not good when they close themselves up in their rooms. And it is some time to breathe through for you when she is in school. Normally school seems to be an incentive. But maybe she is too weak to join school at the moment. My d is still often very tired and after 6 hours in school she often needs a nap...

The crying and the texting about food I remember, too. It was difficult to eat outside for my d and still today she prefers to eat at home where everything is locked in rules. But she is able to eat with friends when we talk about what she needs to eat before the date.

To get to WR is hard and takes time. I wished we had found this forum earlier and with all the good advices got her WR earlier. But you will get there, too. It takes some time to figure out what makes her gain weight and every patient is different. So keep on refeeding and don´t lose hope. It will ge better. You need to fight this battle to win the war. Do something nice for yourself and then put the big girl pants on. I´m sure you have some [biggrin].
Don´t give up.
Tina72
sunshine1974

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Reply with quote  #6 
Firstly, thank you for all of your kind and encouraging responses.  It means alot to me.  As I know you are all aware and have experienced, there is little to no support for us caregivers.  This forum IS that support. <3
Things seem to be unraveling quickly.  My d dropped 4 lbs at this weeks appt. She is more and more refusing to eat.  I had let my guard down because the last few months she has been very compliant and willing to work towards recovery.  Now she is not and does not want to.  This morning I could feel myself losing my patience (again [frown] ) and could
sense my d's sister holding her breath.  She finally did eat breakfast.  She had so much anxiety as I dropped her off at school.  She told me she doesn't want to go 
to school anymore, it is too much for her.  She felt like puking.
Keeping her home from school, doing online courses, sending her part time...whatever it may be opens a whole new can of worms...or stress I could say.
I am overwhelmed and don't know what to do.
I know there are many of you who have been doing this much much longer than myself.  Any advice is appreciated.  Especially if you can help me figure out a way to stop the anger/ no-patience avalanche that is threatening to crash ontop of me.
EC_Mom

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Reply with quote  #7 
Sunshine, I commend you for this long-haul work you are doing. It is exhausting and miserable work.

I got myself onto anti-depressants, the highest dose, and got a supply of tranquilizers to take (half-dose) before meals. It helped me feel calmer and maintain my cool while dealing with this monstrous illness. I also used Eva Musby's meditations before and after meals.
Torie

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Reply with quote  #8 
Quote:
Originally Posted by sunshine1974
She finally did eat breakfast.  She had so much anxiety as I dropped her off at school.  She told me she doesn't want to go 
to school anymore, it is too much for her.  She felt like puking.
....
I know there are many of you who have been doing this much much longer than myself.  Any advice is appreciated.  Especially if you can help me figure out a way to stop the anger/ no-patience avalanche that is threatening to crash ontop of me.


First: Yay, sunshine for getting the breakfast in!!!  Woohoo - that is AWESOME!!!

I agree with tina that full-time school might be too much for her right now.  Many here have had to pull their kids out altogether for a time (varying lengths of time depending on the family) or at least scale down the work.  It's like any other serious, life-threatening illness - health comes first and school second.  Cancer patients aren't expected to rush off to school in between treatments every day, after all.

As I just wrote on another thread, one of the things that helped me increase my patience was learning (here) that however awful this vile illness is for me, it is much, much worse for the sufferer.  We will never really know what's going on in their tortured brains, but it is clearly almost unbearable for them.  And on top of it they are so young, so inexperienced, and traveling through a phase of life that is challenging in the simplest cases.  One of the silver linings in going through this is that my patience has grown by leaps and bounds, as I suppose would have happened with any other serious illness as well.

Hang in there.  Your d is lucky to have you.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
sunshine1974

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Reply with quote  #9 
I guess I just don't understand why my d is suddenly going backwards. She was doing so well and was mostly compliant with eating.  She is now fighting every meal.
I talked to a friend yesterday who wanted to know how much my d weighed... she said "well thats not bad. I wish I weighed that.  My daughter doesn't even weigh that much..." Blah blah blah.  I was so ticked.  I don't even want to see this friend for awhile now.
I talked to the school and have decided to shave off some hours from her school week.  She will go a few partial days and only two full days.  The school agrees that recovery must be the focus.  If she needs to back away from school even more then we will do that.
Thank you all for listening and for the great support and advice.

Foodsupport_AUS

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Reply with quote  #10 
There is a great post by Irishup on extinction burst. Many people report an increase in anxiety and distress close to and around weight restoration. I remember for my D it was important to her to acknowledge that she was still ill. Any discussion or talk that implied recovery for her was distressing because although she was of normal weight her thoughts were far from normal. http://www.aroundthedinnertable.org/post/some-rather-long-musings-on-extinction-burst-relapse-and-recovery-6462360#gsc.tab=0

Another thing to think about is that if her period is coming back she is probably being exposed to hormone levels that are wildly variable at this point, puberty is a point of swinging emotions for most people, when you are ill as well it is likely to be adding to things. 

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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  #11 
Quote:
Originally Posted by sunshine1974
I guess I just don't understand why my d is suddenly going backwards. 


It's so unfair and frustrating that progress is not linear.  Ugh.  I think FoodSupport has made a good guess about why this is happening with your d right now, but I suppose that doesn't make it any easier to bear.   This vile illness is so weird - sometimes they take an inexplicable turn for the worse, and then other times they surprise you by having a good day immediately following a bad one.  All you can really do is take it one day at a time, one meal at a time, or on really bad days, one bite at a time.

Pleasea know that we are with you in spirit. Keep swimming. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Reply with quote  #12 
Hi sunshine1974,
please stop trying to understand that illness. It is lost time. You will never get an answer why she is sliding back at the moment. That is not important. You know how to get her forward again. Just take breath and than go against it.
About your friend: It is really bad that all the people say so stupid things. We struggle a lot with that (maybe you read my post about meeting my cousin this week) and my d often struggles because her friend is weighing less than her and she is not sick. My d has to eat and her friend says "oh, I am not hungry, do you really hve to eat that much?". Some people even say "I wish I could have a bit anorexia for some days" then I think they should have it for 2 weeks and they would never say that again. We have to stand that.
I decided not to tell anyone outside any more what my d is weighing and how much she must eat. If I need to vent I come here so that is an invitation [wink]
Great that you got her schedule down a bit. We had an open talk with all the teachers and green light for leaving her at home whenever it is necessary. School was a big help and she did join in after some time with no problems. Try to keep her in contact with her school friends so that she sees what is going on there.
Many parents are afraid of missing school but I can tell you in our case that was no problem. My d missed 3 months totally and had then a reduced schedule for another month and she is graduating right now without any problems. Health is more important than school.

Keep on going. This tunnel is long but there is light at the end. There is no other way than to get through it.
Please excuse me if I am using then and than in the wrong way, this is not my mother tongue as you might see and I think I have to look into my grammar today...[wink]
Tina72
toothfairy

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Reply with quote  #13 
Hi, I am sorry to read this. Recovery is not linear and it takes a long time,often - a few years.
What helped me was being told at the start by an experienced parent, that as bad as it is for the carer. it is 100 times worse for the sufferer. That kept me going and pushing for weight gain and a good state. 
The illness is bigger than her and it may help  to separate your D from the illness.
I advise you to add a lot of cream and butter to her meals as well.
Best wishes 

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) 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.
sunshine1974

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Reply with quote  #14 
Ok thank you.... I am taking all of this in and checking out the link Foodsupport suggested. [smile]
I need some advice.  What I am seeing and have been seeing (but afraid to change) is that I am not sure my d's weekly appt and weigh-ins are helping her.  The dr. stopped weighing her blind and it causes such anxiety every week.  But there are very few if not NO other options for her/us.  We don't have the typical support team.  She kinda had that in the hospital but when we decided to take her out of IP she was set up with weekly appts with a psychiatrist.  She hates going and gets so stressed out about getting weighed that it lasts for days.  Also,  if i decided to stop having her see this dr I am afraid social services will show up at my door.  They did when we brought her home from the hospital.  But it seems that all her psychiatrist talks about is food and weight....last week it was her period. I have so much anxiety myself going to these appts its ridiculous ( I do try to hide it).  It does keep us/her accountable and I know that we need to know her weight ...etc.  I just don't know what else to do. Something just doesn't feel right.
sk8r31

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Reply with quote  #15 
I know weigh-ins can be tricky, and deciding to move to blind weights can help if the anxiety is overwhelming.

We never had crippling anxiety around weigh-ins, but it was always uncomfortable.  As we moved forward, we ended up doing weekly weigh-ins at home, first thing in the morning, but with some unpredictability (ie not the same day every week).

My d created a chart which we filled in together.  My job was not to comment or show any emotion, but if there had been a drop or flat-line on weight, then it was understood that more food needed to go in, and portions would adjust.  This is just the way we ended up handling the weigh-in issue, and it worked for us.  Others should be around shortly to offer their own ideas and what worked for their families.

Hang in there.  This time frame close to WR can be quite tough, with increased anxiety.  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
tina72

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Reply with quote  #16 
Do you know why the dr stopped weighing her blind? I would suggest that you get back to that.
Can you have an appointment with the psychiatrist without your d and tell him that it is that difficult for her at the moment and that you want him to do blind weighing again? And ask him why he is always talking about food and weight with her?
Could you eventually contact social service and tell them that this is not doing good and if they have an idea how to change that?
Sorry that it is that hard for you at the moment.
It is so ridiculous what we have to fight against ED and the social/medical system...
Tina72
Torie

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Reply with quote  #17 
Some families find blind weighing best, but others do better with open weights.  I think manualized FBT does NOT use blind weighing; if that's correct, someone else can do a much better job of explaining the reasoning than I can.   I'm not saying this is (or isn't) better for your particular family - just that it isn't a black mark by the provider's name in my book.

That said, I think it's kinda odd that she's seeing a psychiatrist every time.  Is there a psychologist in your area who might be a better fit?  These appointments are stressful enough under the best of circumstances - I hope the psych is willing to work with you to lessen that as much as possible.

Please keep us posted.  Hang in there. xx

-Torie

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