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annabanana

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Reply with quote  #1 
Hi everyone, the last time I posted, I had said that my Twin 1 (T1) was driving me crazy because of her anxiety of eating separately from her twin sister and was having issues at every meal. She actually hasn't stopped crying and nagging and yesterday when she started screaming I lost it. [frown]   I wish she would just go to her room and throw things around instead of following me around the house!

I've come to the place where I think we desperately need a break from each other--not just for the girls' sakes but also for mine, as my sanity is starting to go and my will to deal with this alone is waning.   I was hesitant to send T1 to my s-i-l because of some things she had said that was triggering for the girls, but I don't have much choice right now as no one else is available.  And my non-ED daughter is willing to go with her sister to keep an eye on her so I am not worried as much.

My second Twin (T2) has gained so much weight that her body is riddled with stretch marks, unlike T1, who only has a little pouch.  In fact, she's been telling me that her 'rashes' were making her body itch and I didn't tell her until recently what they were, because she was crying every now and then about her weight gain and wanted her to be more stable emotionally.  As I've mentioned before, I separated the twins about a month ago so that T1 cannot see what T2 eats or drinks.  That's the main reason for T1's instability.

I am thinking of having T2 start feeding herself during this week of separation.  (I think this is Phase 2?)  She really is stable physically.  And the BDD tendencies were there years before ED, so it's not the eating that's the issue, in my opinion.  But how do I do it correctly?

I'm also thinking that after the separation is over, just let T1 face the horror of seeing her twin get her own food, while she is still getting plated.  I'm hoping that one week of mental break will help me to face the challenges better.   But I'm scared that I won't be able to be calm...

I really would appreciate your thoughts!   To have zero guidance from the hospital has been so discouraging, personally, but I understand that they have to priortize those that are worse off than my twins.  The girls' therapists are not dealing with ED at all because they also think it's not an eating issue, which only confirms my thoughts.

BTW, both of the girls told me that their hatred for their bodies were there waaaaaay before they started on their journey to AN.  So I guess they are comorbid.  Not sure if I'm using the terms correctly.   So I don't know if they have had mental issues before, would this change make their condition worse?   T1's gaining weight but her anxiety is so much worse.   (And I'm taking her to the GP for medication next week.)

Sorry I'm not able to think or write clearly.  





Torie

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Reply with quote  #2 
Hi annabanana -  I take my hat off to you for managing all this on your own.  Wow.  One ED-kid is way more than enough to deal with.

I agree that you surely need a break, or at least a partial break, but to be honest, I have to say the idea of T2 starting to take responsibility for her eating while away from home makes me very nervous.  It is such a tricky transition, and so very s-l-o-w.   One mom who used to post here started by  letting her d try to pour her own milk.  She wasn't able to pour enough the first time, so she was allowed to try again the next day.  And the next.  If she still couldn't manage to pour enough on the third day, that was OK; she just wasn't ready yet so they would try again in a week or a month.  So you get the idea that this is not a process that is accomplished in a week, especially in a household that isn't accustomed to ED.

So my suggestion is to see if your SIL can take responsibility for feeding while your d is there.  

I can't remember where you are located, but you deserve some professional help.  Good heavens yes.  I wonder if we can help brainstorm ideas to make that happen.

The formatting has gone wonky and it is beyond late here so I need to sign off.  Please remember that we're with you in spirit.  Your girls are so very lucky to have you.

Keep swimming.  xx

-Torie

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

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Reply with quote  #3 
Thanks Torie--I think I'm not clear.   T1 is going away along with my younger daughter, who knows how much she needs to eat for each meal/snack, and her twin sister, T2 is staying with me for a week.  I was thinking of letting T2 (the one staying, with lots of stretch marks) start feeding herself little by little during this separation and see how she does it, maybe like the mom and milk. 

T1 will have a major freak out when she sees that her sister can feed herself to the appropriate amount and she cannot.  I'm afraid of what will happen then, as T1 has threatened to stop eating if she can't eat the same amount/things as her twin.  Then what do I do?  T1 knows that we are stuck and that we need to do something.  But T1 is so fearful that if we make a change, her sister will start losing weight and that she will be the 'fat' one again.  So she's been fighting any changes. 

By now I had thought the hospital would help out (and unfortunately I've inquired at other places on my own and they have even longer waiting list) and my doctor is reluctant to give me more referrals. I guess that's how Canadian health system works.  When we were assessed in May, the hospital said to continue doing what I've been doing.  It's been 3 months now, and I do sense that T2 needs the next step, unlike T1. 

I just would like some guidance and don't know where to go with this.  I've inquired of other twin families but the only one I know that had both twins with ED never had to reconcile both kids in diff stages.  I can't find anything concrete in books/articles/even from doctors...









 
tina72

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Reply with quote  #4 
Hi annabanana,
I think Tories is right, that´s no good idea to switch her into phase 2 quickly and on her own. It neede 3 month at our home for our d to make good and enough choices on her own and even now we veto sometimes. D2 needs someone with her to take over when she makes no good decisions. We started with decisions between A and B and now after 3 months she is eating breakfast, coffee snack and dinner on her own but lunch is still plated. If you change too quickly into phase 2 you might see a relapse and that is what you need less at the moment.
I think its a good idea to separate them but she still needs help because her brain would not be able to make the right decisions.
Tina72
mjkz

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Reply with quote  #5 
AB, I think it is clear you all need a break from one another.  It sounds like you have a good plan and if you can get some down time while she is gone, that is great.

As for T1 deciding not to eat, it may happen but you know what to do.  Life stops until she eats and don't let her eat with her twin again because you are just reinforcing that if she stops eating, she will get what she wants or feels she needs (and I say feels she needs rather than it being an actual need).  Also don't be afraid to be a parent!!  If she is following you around the house, tell her to stop and that you need some time to yourself.  Also I'd be shutting down that screaming really quickly.  If she can't control her outbursts, remove her from the situation until she can.  I was lucky enough to have a room where  my daughter could go to regain control again (we modeled it on a room for someone who is autistic and needs to cut down on stimuli-dark with padding and soft things to help her regain control, music if she wanted it, weighted blankets, etc).  When she was in control again, she came out.

I think it is a great time to see how T2 does with food without the pressure of T1 there.  Did you ever get T2 into a day camp or anything?
toothfairy

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Reply with quote  #6 
Hi there,
So sorry to say this but....
I just think that it is too difficult for another person, your SIL to manage T1, also just in my opinion, I would not burden your younger Daughter with this enormous problem either.
Would it be an idea for T2 and younger daughter to go to SIL with her meal plan? And you work with T1 on her own?
Especially if she is starting medication, I would have her with me under close supervision.

Also, in no way would I give control back to T2 at this stage, this is a very very slow process that takes huge vigilance and it is like another dance.
Sorry this is not what you want to hear and is just my opinion.
Best wishes.
TF

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
berry75

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Reply with quote  #7 
Wow how incredibly over whelming your sistiation is.I am also a mother of twins my ed daughter was diagnosed nearly two years ago and my biggest fear has been that both of my girls would develop an ed as they are identical the genetic component has always been a worry.My ed daughter is doing well,it has been a slow process,just recently my non ed twin has lost weight and I must admit it sent me into a major panic. I barely kept my sanity the first time,I realy dont know how I wont lose it to have to go through it again.I don't have a lot of support so its on me either way.I understand your need for a break,and hope you can come back rested and ready to keep on fighting.What other choice do we have.
annabanana

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Reply with quote  #8 
That must be worrisome, berry75.  Sorry to hear that.  I know you will be vigilant for your other d.  [frown] 

mjkz, I am fantasizing about that 'quiet room' of yours.  I think my brains (and my health) would be quite different if we had a room like that!

I hear you toothfairy and tina.  I am not going to do anything different for T1 when traveling--she will be monitored by her aunt and her sister and her activities limited.  No medication during the trip, unless T1 really wants to try it, as the upcoming trip is giving her anxiety at every turn.  I think at this point, because she feels like she's losing control in food area, her anxiety is just transferring to whatever it can. 

I just wish I knew how the FBTs work just so I can start implementing the different phases at home, especially for T2, because I think she really needs to move on to the next step.  Letting her choose her own snacks for example.  I gave her a big slice of cake the other day and I felt bad because it was so big (and it was past 10pm) so I took a couple of forkfuls away, and she gave me a sheepish smile and took them back. [smile]

I would appreciate more examples of how to give food independence a little at a time, like the milk story.  I think the main reason why T2 doesn't eat more food on her own volition is because we have 3 meals and 2 snacks a day and she no longer enjoys the taste of food.  Her body doesn't even have the time to get hungry.....
Torie

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Reply with quote  #9 
Quote:
Originally Posted by annabanana
I would appreciate more examples of how to give food independence a little at a time, like the milk story.  


Hmmm ... I think letting her try to choose portion sizes is good in the early days - you could let her serve herself a snack item or one meal item.

Or choose between, say, an apple or an orange.  Nutella or jelly.  Rye or wheat. That type of thing.

Probably best to try one thing at a time; if she succeeds you can try adding another choice in a few days.  If she isn't able to make a good choice, no problem.  She can try again tomorrow.

Please keep us posted. xx

-Torie

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

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Reply with quote  #10 
AB, when does the separation start?  This may sound weird but I'm actually excited especially for you and T2.  This is going to give you a break and give T2 a chance to spread her wings and take flight.  Cheering all of you on.
tina72

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Reply with quote  #11 
Hi annabanana,
I think every family needs to find their own way to get from phase 1 to 2 or 3. I can tell you how we did it:
First we made choices like Torie said: 2 things for option, one to chose. When that worked, we allowed her to get her plate ready for snacks. Than when she was nearly weight restored we cancelled one snack (the morning snack) to give her the possibility to feel hungry again. That was not easy to stand for her at the beginning because she was frightened that she can´t stop eating when she was hungry. Shurely she could stop. We spread out the calories on the other meals and that worked well.
For some weeks we still plated breakfast, lunch and supper and she plated the afternoon snack. Than we allowed to plate breakfast and than supper. That means at the moment she is choosing on her own what to eat for breakfast, afternoon snack and supper and we still plate lunch. But we see what she eats and she is only allowed to have 2 meals out of the house a week. We have a veto and if she doesn´t choose good we tell her that and she changes.That works quite well since she is weight restored.
There are no rules that you have to do this or that in this or that week and you don´t do anything wrong if you chose another way. Mostly its try and error. And every child and family is different. Listen to your but.
Tina72
annabanana

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Reply with quote  #12 
Thanks Tina and thanks for checking in, MJKZ! 

I sent T1 off yesterday to FL with her younger sister.   The only direct flight from Buffalo to Tampa was at 5am, but we did it.  Now T2 just is so relaxed!  Tina, T2 has been weight restored (BMI ~25)for so long that if we had a FBT team, I think we would have been told to let her eat on her own some time ago.  After sending her twin sister off, we went to a donut shop for breakfast to celebrate...and I ate through my tears.  (Actually I think it was mainly from yawning....)

I've let her eat on her own for the last couple of days--she doesn't choose food as I'm the one cooking, but she can plate herself and she has no issues at all, which was expected.  In fact, it's as if we've never had an ED because she chooses more meats and carbs over veggies.  During the separation time, I'm trying to help her with her digestive system as she's been so uncomfortable for so long with bloating and constipation but I wasn't able to do anything with supplements because of her twin sister. 

Right now, MJKZ, T1's so anxious...she sent me a bunch of emails this morning asking me to make sure T2 doesn't move around unnecessarily, or dilute drinks.   I'm hoping that she'll calm down but even now she is very anxious and I think not being able to cry in front of her aunt (my kids are so good around other people!) is sort of adding on the pressure of stress.

I'm just wondering how I'm going to take the next step.  And when.  I need some serious guidance here.  Spoke with the hospital today and when I tried to ask some questions the therapist said that we'll discuss when we meet for the review!  That's at the end of Sept!!!!!   No help whatsoever.  I am so disgusted and disappointed with this hospital and its program.   GRRRRRRRR




Foodsupport_AUS

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Reply with quote  #13 
Great that you have been able to enjoy the time with T2, and that she is doing so well. I think it demonstrates the need for separation of them. T1's anxiety is clearly a sign of the strength of her illness. 

Hopefully she is able to keep eating whilst she is away, and does not go further backwards. Enjoy the break. 

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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.
mjkz

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Reply with quote  #14 
I can't tell you how happy I am for you that T2 is handling this so well and you get a break.  It sounds like your gut feeling on where T2 is is spot on (trust your gut!!) and I hope this week is especially nice for both of you.

Quite honestly I'd send T1 a text and tell her that you will not accept anymore comments on what you should be doing with T2.  You are their mother.  You know what needs to be done and you don't need any direction from T1.  I'd tell her you only want to hear about what is happening with her and her aunt. Nothing more about T2 and eating.  I'd continue that when she gets home too.
toothfairy

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Reply with quote  #15 
Hi there,
I am also so pleased for you and T2, What great progress you have made. 

So If I were in your shoes right now... I would get T2 back to school as soon as you can.

Also I would do all poss to get T1 weight up. hide bene calorie, cream, butter,canola oil where you can...

Regarding her correspondence with you - I agree with mjkz....
"
I'd send T1 a text and tell her that you will not accept anymore comments on what you should be doing with T2.  You are their mother.  You know what needs to be done and you don't need any direction from T1.  I'd tell her you only want to hear about what is happening with her and her aunt. Nothing more about T2 and eating.  I'd continue that when she gets home too.

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
annabanana

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Reply with quote  #16 

Well, we had a little incident this morning.  T1 checked email early this morning and accidentally went into my account and saw one of the ATDT replies and she clicked on the "visit topic" button.  I think this is relatively new.   She read all my posts on this topic and was crying all morning and I had to do some damage control over the phone.  Yikes.

Her anxiety is really high.  I am wondering if we should move onto anxiety therapy instead of ED therapy from this point on.  It doesn't matter what we do, her anxiety is just not going down.  (She now says she's not open to medication because all I do is lie behind her back.) The therapist we chose for her has had a lot of experience in dealing with youth mental health but she believes in dealing with core issues first, which I think is a good idea in a different circumstance. She wants to explore what might have caused T1 to have ED, but I feel that it's not practical in what we are needing.  In fact, I think this just perpetuates the blame game that nobody wins.  And I do believe there are genetics at play that's greater than the environment. 

I found out that there's an anxiety clinic nearby and I'm wondering if that's something we should try.  If her anxiety can be managed, I do believe moving forward (which we will attempt to do either way) will be so much more bearable.  Any thoughts?

toothfairy

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Reply with quote  #17 
Hi there,
The only place that I would send her is to somebody that uses evidence based treatment for eating disorders.
In your shoes now, I would also only take her to somebody that others with ED kids have used to their satisfaction.
As you found out before, some help can be worse than no help.
For example she could go to an anxiety clinic & be told to cut out junk food, eat healthily & exercise a lot!!!!
In your shoes my next move would be anti anxiety meds , get the weight up more , & get her a good ED therapist....
Best wishes

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
Foodsupport_AUS

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Reply with quote  #18 
One of the interesting things about FBT is that it is agnostic to cause of the ED and then looks at maintaining factors. The other therapies that have been shown to be effective for AN also don't specifically look at the "causes" but rather what is maintaining things now - anxiety, perfectionism, environmental stresses etc.. I agree this therapist is looking at a blame game, and if that is where she wants to go I would look for something else. 
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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.
mjkz

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Reply with quote  #19 
Honestly I think that is something you will have to judge on your own.  For instance my daughter has a trauma history so she has a therapist who specializes in both trauma and ED.  I believe as does her therapist and her my daughter herself that treating just the trauma caused the ED to spin out of control and vice versa.  The therapist we have now is extremely skilled at addressing both issues at the same time without searching for a cause or anything like that.  My daughter has depression premorbid.  I suffer from depression and both of us are on meds.  Her depression had to addressed at the same time.  That being said though, treating her ED and getting her to good weight was key as was continued nutrition.  I think DBT was more helpful than anything early on in recovery because it gave her skills to use immediately when needed. 

I don't think treating her anxiety alone is going to do much.  My daughter was on meds for anxiety and that did help quite a bit with anxiety over eating.  She has since tapered off those meds.

I"m glad that you didn't leave.  I don't know how much damage control you can do because I think you have been very honest and she is probably struggling to deal with the impact her anxiety is having on all of you.  You may just need to see how this plays out. I'd still be very firm about not discussing T2 with her, not accepting her comments about T2's nutrition, etc. and keeping the two very separated.  Over time her anxiety will diminish.
Torie

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Reply with quote  #20 
Quote:
Originally Posted by annabanana
Her anxiety is really high.  I am wondering if we should move onto anxiety therapy instead of ED therapy from this point on.  It doesn't matter what we do, her anxiety is just not going down.  


So sorry for the difficulty, annabanana.  I wonder what your options are for her treatment.  It's so hard to find someone good for anorexia OR for anxiety.  (I know because I have been looking for a suitable provider for 2 different d's in two different states, and also have read about all the unsuitable "help" people here have fallen into these years.)

Maybe do some research and see what the most promising help is, for either of the issues? (AN or anxiety).  It seems to me that an excellent anxiety therapist might be better than the typical AN therapist or maybe vice versa.  The issues are so interrelated that if you can find a good person for one issue, hopefully they would at least do no harm with respect to the other.  

You might want to take a look at my current thread about how to find a therapist.  It has a lot of helpful information and links.  So many locations don't seem to have any suitable therapists for either condition.  Ugh.  If it comes down to doing a google search, I suggest including the phrase "evidence based."  That helped sift out the riff raff, for me.

Best of luck and please keep us posted.  xx

-Torie

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

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Reply with quote  #21 
Thank you all for your input. I have a better idea about what to look for. At this time, I'm just reaching out for any kind of guidance to help T1 move forward, and the therapist talking about what could have happened to cause this is not very helpful.

We actually stopped sessions with T2 because her therapist felt that in order for T2 to hate herself so much there has to be some sort of a childhood trauma, and wanted to devote some sessions to trauma assessment. Both T2 and I said no there was no trauma--in some ways that would explain things--but she of course was doubtful. I know they're in a place to grope for an answer but I had hoped for some coping skills instead, which was not given at any of the sessions.

I will look at your post Torie. Thank you all as always, for your support!!!
toothfairy

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Reply with quote  #22 
Hi there,
I posted a podcast about treating the trigger V treating the Eating Disorder below, it may be of interest.

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
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