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annabanana

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Reply with quote  #1 
Hi everyone, I was blessed with many advises and suggestions in my first post and I've been trying some of them out, but most of them are not working for us.  I have had some parents with twins that have kindly replied but they have only 1 with ED.   I am hoping there's someone out there with a similar situation as us so I can ask (or even answer) some questions.

I haven't seen any recent posts with twins other than mine, but I'm hoping someone might have experience or knowledge about dealing with twins.  Thank you!!
Foodsupport_AUS

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Reply with quote  #2 
At present I think you are the only parent on here with twins or two children that both have an active eating disorder. We have had a number before. I am not sure being twins makes much of a difference. They both need feeding and care. Why don't you ask what questions you do have? 
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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.
berry75

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Reply with quote  #3 
I have identical twin girls,only one with an ed,at our clinic we were told an eating disorder can affect both twins due to the genetic component.To be honest its my worst nightmare.As my girls are very competitive with eachother.I am sure it must be incredibly hard especially if they are encouraging eachother.I would assume even due to the fact they are twins it would be the same treatment and techniques you would use for non twins siblings,either way, so much harder.Good luck,I wish i could offer more advice,please keep the forum updated on how things are going.
Sotired

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Reply with quote  #4 
I do remember that one parent here had twins with anorexia.the more willing one (they were 18 I think?) went for treatment away from home first.then a little bit later the other twin went,though I'm not sure if it was to the same facility.
She was on her own and had struggled for some time,so residential was the best option for her.
Would that work in your situation?could you send one and keep one,or send both?this is just an idea so please ignore it if it is not useful.

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berry75

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Reply with quote  #5 
Are your girls idential?? Just wondering.As i have been reading a lot about the genetic link .
mjkz

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Reply with quote  #6 
Quote:
but most of them are not working for us. 


Why not share what you have tried and what isn't working rather than searching for people in the exact same situation?  You may never find anyone in the same situation and treating twins shouldn't be all that different than treating two people with EDs.
annabanana

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Reply with quote  #7 
Thank you all, sorry we've been traveling so I just got the chance to check my email and saw your replies!!!   It's been so overwhelming to read so much of what everyone's going through and I feel very sad every time I log on to FEAST....

To answer some of the questions, my twins are not identical and they are not in the same place in their recovery.

I have twin 1 (T1) who has hijacked the recovery and she must do whatever twin2 (T2) does, even down to the number of bites T2 takes.    So we implemented plate A and B--where each twin takes turn and pick a plate so that the food they get is random--that I'm not purposely making one bigger portion for T1, like she thinks.   And we put a barrier so they can't see each other's plates.  But T1 'realized' one day that she tends to pick the 'bigger' portioned plate at every meal so she asked to see T2's plate and then her napkin after the meal. Then she studies the area underneath because T2 must be cheating by dropping food.

Initially I said no and then her hallucinations got so bad that we decided to let her have her way.  That's when I asked forum whether it was more important for the weight to be restored (which is) or for the anxiety to be reduced so she can actually eat.  I was getting physically ill from tending to her episodes that stemmed from anxiety of eating more than her twin.  (I have liver damage and severe anemic where pills don't work so I was already not well when this started.)

Many wrote don't negotiate with ED, which I felt I was doing by letting her check the other twin's plate and napkin, but her hallucinations were so bad that she couldn't move at times or even sleep.  She didn't sleep 3 days in a row and most of the time I didn't either because of that.   And everyone in the house was suffering during this time.

FYI, my husband is a source of anxiety for both girls so he hasn't been able to help out at all.  He is of course at loss for this.  He used to talk constantly about weight and being 'fat' that he triggers the girls at times.

Now it's not just eating, but even every single movement T2 makes must be copied by T1 or her anxiety explodes.  This is driving T2 crazy and her own recovery is being hindered because of T1.   This is difficult to explain, but T2's weight was restored months ago (as well as her mind), but she is forced to eat more now because if she doesn't eat, T1 won't--T1's need for eating is much greater than T2 because if T1's hungry, her anxiety increases as well, resulting in more hallucinations.  And she's so scared of what she sees and hears (loud screams usually) that she asks to eat as often as she can.   This has stressed T2 greatly as of late, understandably.

That's the main reason for my asking of what other twin families are doing.   If you have experience in something like this, I would be grateful for your sharing!!



Foodsupport_AUS

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Reply with quote  #8 
This behaviour you see from T1 is very common in eating disorders. Requiring/ demanding that others eat/drink the same amount and do the same thing. It really does need to stop. The fact that T2 is recovering herself makes it much harder for her too, as you point out. I know that you are waiting for a program, but is there any possibility given T1 has the added issues of psychosis, if she is not able to eat without T2 there then perhaps she needs a higher level of care. 

Ideally as we have all said let T2 eat separately and then if you are happy with her she can leave the table. If you don't serve plates prior to this then T1 has no way to compare. 

I also noted that mumto3 has been on recently. She does not have twins but she has been managing with two children with ED at the same time. 

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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  #9 
Hi annabanana - So sorry that you are struggling with your own health issues on top of it all.  Ugh.  Your h really needs to help out - if he can't help with the feeding, there are still lots of other things he can do.  I wonder if he could step up his game in other areas (laundry, cooking, cleaning, errands, playing games with girls if he has learned not to talk about weight / size / shape).

I think you said T2 is weight restored so I want to mention than many / most here have found that our ED-kids need to gain significantly more than anyone expected.  Pretty much everyone finds that they need to return to the weight they were before they started restricting (i.e., their previous high weight).  In any case, it will do no harm whatsoever to T2 if she gains an "extra" 5 or 10 pounds - it's prudent not to hang around at the lowest healthy weight because stuff happens and they lose weight unexpectedly sometimes.  So I would urge you to take that (i.e., "too much" weight gain for T2) off your list of things to worry about.

I do agree that T1 needs to be helped to stop following T2, for everyone's sake.  

The most important thing, I think, is still that T1 needs to keep gaining.  Personally, I would prioritize that above all else.

Hang in there.  You're doing a good job.  xx

-Torie

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toothfairy

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Reply with quote  #10 
Hi there,
Bearing in mind the girls age 17 , you have a very limited amount of time to get good evidence based treatment, before they are 18 and can refuse treatment.

Again my opinion is that Twin 1 needs a higher level of care.
You talk about treatment in May, but this is family therapy, although its better than nothing, I really think T1 NEEDS A HIGHER LEVEL OF INTERVENTION, especially if your H is not able to tow the line...

I know you mention in your older threads that you would have to pay and this is not an option.
Would  it help if we brainstormed what might be available in your area Toronto?? Maybe somebody here has experience of state funded programmes in Toronto??

At the present time, it sounds like you are you are dealing with ED and possible Psychosis in T1, who knows which came first the chicken or the egg, but she needs serious intervention....
She needs a higher level of care, maybe in an adolescent unit, she may well have a co-morbid like schizophrenia?? I really feel she needs a full psychiatric assesment.
In the meantime, I would not have the girls eat together. I would space them an hour apart and give them   entirely different meals.
Best wishes

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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.
loubay

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Reply with quote  #11 
Doubletrouble had twins: http://www.aroundthedinnertable.org/profile/1910038#gsc.tab=0
mjkz

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Reply with quote  #12 
I can only agree with what others have posted.  I hear you on how difficult it is but on the other hand you can't let either twin hold the other back.  It is not fair to T2 to end up stuck in back in a bad situation because T1 can't handle anything different.  This is life and death. T2 needs her own space.  Is there any possibility of getting T1 to a higher level of care?  Evaluated for medication?  Any family that T2 could go visit to give her some time away from T1?
annabanana

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Reply with quote  #13 
Thank you -- I left out a lot last time I wrote because I had written so much and even I was getting tired of reading it!  [smile]

So T2 has gained over her normal weight and her clothes no longer fit her, so she's where she's supposed to be.  T1, even though she eats the same as T2, has reached her healthy weight (she is taller) but has not gained the extra weight like T2, and this was also my dilemma.  T1 has this need to eat constantly but T2 doesn't so I've had to hold T1 off a little bit as well.  I don't want to, but if I have the girls eat as much and often as T1 wants to, then T2 can't handle it.

In the beginning, it was just T1 at home homeschooling because of her condition but I realized T2 needed my attention as well--her weight loss was not dramatic at all by the time we caught it, but she was struggling with body image and school became too burdensome after the 1st semester so I let her stay home as well starting in January.   That's when this need for food comparison started for T1.   

But T1's anxiety is another matter.  And when she's really anxious she just can't eat, so that's why I've let her do what she felt she needed to do, which is to check her twin's plate, which reassures her that she's eating the same amount.   When I tried to take that away her anxiety shot up and she wasn't able to function like I described the last time.   My GP heard of her hallucinations and suggested medication right away--but she had no idea on where T1 was physically or even mentally. She just wanted to start experimenting with drugs and that was not something I wanted to be the first thing, even before seeing ED doctors, even before getting her weight back. 

I am at this moment considering putting T1 in a private center if necessary--Some places help with financing so I am hoping we can get help that way.  We are waiting to see what the doctors have to say at the ED unit.   Sorry my mind is so muddled, it's difficult to write as clearly as I want to.  [frown]



toothfairy

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Reply with quote  #14 
Hi annabanana,
That detail makes more sense, So I sort of get the picture.
Gosh its no wonder you are muddled!!!!!
Uugghhhh
I really, really feel for you...
Its just so complicated, but you seem to have made good progress.
Have you tried adding butter & Heavy Whipping cream to T1 food?

Are you not under any ed team at all yet???
Quite honestly I think you need a multi disciplinary team for the 2 of them...

Personally I would not let my regular doctor dabble in trying psych drugs ...no way...you are very wise.

I would only let my kid see a specialist ed psych ....who would be experiencef in the appropiate drugs & co-morbids.
Can you get access to a good team??

Is there any way of getting them to eat in separate rooms?
Sorry for all the questions.
I really want to warn you though, all ed units /providers are NOT the same....
They can be like day & night......be very careful where you go.
Best wishes

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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.
annabanana

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Reply with quote  #15 
Thanks toothfairy--I feel like you and the rest of responders are guardians for those of us starting this terrible journey--I can't say thanks enough for all of your questions, suggestions and just your empathy.

Because we are doing random plates to ensure equal intake, I can't add to T1's plate once the choice of plate A /B has been made. This trust from her was earned from many many 'mistakes' that I had made. [smile] But I do utilize a lot of olive oil and cream for our foods in general. In fact, we are still doing Sundae Sunday, where we go get the girls' favorite Ben & Jerry's and have it as dessert each Sunday. It's an expensive habit to form, and usually there's some crying afterwards. (Once, when the girls felt especially courageous, they decided to have a pint party where each girl took one pint and watched a movie. There was a lot of crying the following 2 days!)

We are not under any team as we've been waiting for a spot for the past 7 months at this hospital and I believe they are going to have separate therapists so don't know if that means they are going to have a different 'team'

Yes, I've read some horror stories so I am prepared to seek other options but this hospital comes highly recommended so we are hoping for the best. In fact we are planning to move closer to the hospital since the girls will need to have separate sessions.

I am wondering if any of you can give me some insights to your own child's recovery, especially dealing with an ED unit--what are things that you wish you did differently--because they are professionals, I will trust them but there may be times that your instincts, knowing your child better than anyone else, may say otherwise. I would appreciate your feedback on that. Thank you.
toothfairy

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Reply with quote  #16 
Hi there ,
I am so angry that you are waiting 7 months to see somebody, in outpatients, just to try FBT, whilst you are at home with ED twins!
I think you said appt is in May, so hopefully things will start rolling to get them into recovery soon.

Some insight into my own hindsight now that my S is doing well-

- i believe in very aggressive inital intervention as a principle
I think that if good progress is not being made at home within a month or so , that an ed unit can be the kickstart required.

-I have absolutely NO REGRETS that my S Went straight to an adolescent unit the day after he was diagnosed (there us no dedicated ed unit in my country for teens).

-My kid"s stay (4 months) in the unit was instrumental in kickstarting his recovery. Ed quickly got the message that we meant business!

- IP is no picnic, there were many flaws in my S Treatment, and in the hospital, lots of the thinking was outdated, but the bottom line was that they believed in the Maudsley method, and they practiced a form of that treatment.
I believe in the Maudsley method of treatment for this illness.

-This is the big picture - I disagree with lots of practices & opinions there, but overall it got him re-fed to bmi 19 ,(taught us a lot)& then we took over.....& at home now,we have brought him up to a much higher more suitable bmi for him.

-To be honest, all the IP business is well and truly forgotton about at home,,,,we took the good part & we moved on!

- i doubt there is any such thing as a perfect recovery or solution!

- After my S was discharged we used & still use the same procedure for meals at home.
We stick to the same meal principles......
I cook & plate, he eats with us, 3 meals & 2 snacks.We are calm & consistent & vigilant still.
He has very few ed behaviours left...we are in a goid place,we are very lucky!

We are 1 year 7 months in since diagnosis.
Best wishes

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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.
annabanana

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Reply with quote  #17 
Thank you toothfairy, I will keep that in mind.   The main thing I've learned throughout all this ordeal is that nothing replaces a mother's intuition.   I am so glad to hear that your son is doing well.  Good job mom and family!
doubletrouble

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Reply with quote  #18 
Hi annabanana,  doubletrouble here. I haven't posted in a very long time but I do tend to visit the site once in a while especially each May as my twins (identical twin girls) were both diagnosed with RAN in May 2012. May is an emotional time for me but each year is better and better. My daughters were acutely sick for 3 years. Weight restoration was the most important factor in their recovery. They still struggle with anxiety, general mental health issues but they are in an amazing place right now, graduating high school, healthy and happy, socially active, eating completely independently, both are moving out of state to different colleges in the fall, and most importantly we know they are ready.

I don't have to tell you that having twins both with ED as you are experiencing complicates recovery a great deal (this is the main reason refeeding for us took about 3-4 times longer than average). I agree with other posters who are saying T1 requires a higher level of care. At this point you have to do what is best for her individually and it sounds like she may have additional co-morbid conditions that T2 does not share. One thing I find myself thinking is that if I had to do it over again I would have utilized an inpatient or outpatient program to help get my girls refed sooner rather than later. It was incredibly difficult and exhausting to refeed for so long. At our hospital (the best for evidence-based treatment and FBT) there were no inpatient or outpatient slots available so we had to do FBT at home only with a therapist visit once a week. We really could have used a lot more support! However while you are waiting for a spot I would suggest feeding the girls separately as much as possible, start with favorite foods, do you have anyone who could sit with T1 during meals and give you a break? I hope this helps. My heart goes out to you truly. I know how difficult this is and you are doing an incredible job. Your girls are lucky to have such a caring and devoted mom. It is incredibly overwhelming. Just get her weight up as soon as possible, in the meantime, the best you can. I had to get very creative so I relied on a special "smoothie" made primarily of canola oil and heavy cream with a little frozen fruit and carnation instant breakfast powder that really helped boost up the weight. We did smoothies for so long, I even took the blender on vacations and weekend trips, it helped so much to cram in the calories needed for weight gain. My girls couldn't even look at a smoothie for a long time after WR, but now they make them themselves (of course they are normal smoothies not the ones I made!!). XOXO Big hugs to you.

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Mom to beautiful ID twin daughters both diagnosed with AN May 2012 at 13, now fully recovered from ED. "Necessity, mother of invention." Plato
toothfairy

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Reply with quote  #19 
doubletrouble, great advice, and I am delighted for you xx
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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.
doubletrouble

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Reply with quote  #20 
Thank you so much toothfairy.
Another thing we did was try to go out to eat, it is a convenient way to separate the girls. Take one out to a store and then stop to eat. That could be a way to get her to eat seperately from her sister and stop the ED from being able to compare/know plates, calories, etc. my girls were tormented by ED about eating out (one time one daughter said she couldn't eat anywhere with a menu!) so that was part of our therapy. Plus a break from cooking for me!

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Mom to beautiful ID twin daughters both diagnosed with AN May 2012 at 13, now fully recovered from ED. "Necessity, mother of invention." Plato
annabanana

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Reply with quote  #21 
Thank you doubletrouble, for sharing your story and giving me encouragement tonight as I read your reply. I do rejoice with you for where your girls are right now. My girls have their assessment done at the hospital this week--we've been waiting for a long time. I might have more questions to ask the forum members as we start our therapy sessions! Thanks again, doubletrouble, and toothfairy, for sort of watching over me. [smile]
mumto3

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Reply with quote  #22 
Hi Annabanana,

I have two girls with ED and it is so hard.  One presented first and was inpatient.  I didn't recognize the signs in the other one till later...  Mine are several years apart.  

Things that have worked... both are in phase II, but because of their age differences (one is a young adult), I have approached it a little differently.

One eats very quickly (to get it over with) so I often call her down to the dinner table first, she finishes, and then I call the other one down (it usually takes her 2x-3x of me asking for her to come to dinner).  Don't know if it would work for your two...  

Also I tried feeding them different items on different days.  Dinner A and Dinner B go to twin 1 for two days and Dinner B and Dinner A go to twin 2 for two days.  You would have to cook two meals on first day but could just reheat second day.

I had to keep reminding my D's that they were different.  I'm not sure I would let the one twin keep checking on what the other did or did not eat - I would not let either D engage in a conversation about the other regarding food.  I just kept telling them it was my job and they needed to focus on themselves (repeat calmly about 1 million times to them...).

As much as you can, separate meals and snack times - I know it is exhausting... two years later I'm still exhausted and still feeding cause one is still growing and one lost a lot of weight at the end of 2016.  We are just clawing our way back up the cliff.

I'm not sure about T1's hallucinations - do they just have to do with T2's food?  If so, then I would keep her from checking T2's food - my kids are terrible at assessing how big a portion they have in comparison to everyone else at the table (their's is always HUGE and mine are tiny - never mind that I'm not an active, growing teenager...) when they are actually equal.


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annabanana

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Reply with quote  #23 
Hi, the main issue with the feeding time, is that T1's anxiety is directly linked to the caloric intake/outtake compared to T2.  So if T1 eats one crumb more than T2, or T2 gets to move around one more second than her, her mind starts to scream until she can't hear anything or move.  And because of the pain she's feeling, she lashes out.  This didn't start until T2 left school to recover at home in January this year and joined T1 who was already home.

T1's been able to handle eating so much better because of the system I have, and T2 is easy going enough to cooperate although it's not always easy for her as you can imagine.  But I do know I need to get them going on a separate recovery path.  I've tried to separate them before and the unknown was too much for T1 to handle in every way.  I am hoping that the hospital will tell me to separate them, and after last week's assessment, I should hear from them later this week.  T1 is greatly anxious because of that. 

I am mentally bracing myself for a few weeks or months of hell--we now at times can laugh together during meals and the twins are able to eat all their food within reasonable time frame but I do agree that these changes are necessary for us to move forward.   I just need to have the mental and emotional room to take all the freakouts we are going to have so I can stay calm and encouraging throughout.   Thank you all for your advises!!!





mumto3

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Reply with quote  #24 
To be honest, I am worried about T2... I refed my youngest while my oldest watched and supported, and then she fell down the rabbit hole...  T2 is in no position to help her sister, even passively, by letting her sister examine her plate.  

I would rip the bandaid off - not really fair to either sister.  

That being said, whatever is getting the weight on, is worth trying at least for a little while - it is soooo much harder with two and I thought refeeding the first was hard enough - there are days when I think I just don't have the energy to be calm and patient any more.

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annabanana

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Reply with quote  #25 
Thank you mumto3--I am hoping the hospital will say the same thing and that would reassure T1 that this is the right thing.  For the most part, she's cooperative but again, the anxiety is through the roof when it comes to her twin, but she knows herself that she's stuck.   She has been gaining weight steadily and I am trying to push her over the threshold so that she can handle the separation a little better once we hear back from the hospital this week, but unfortunately, it seems to be T2 that's been gaining weight and not T1 at this time.    

It must be so difficult to repeat this with your younger d.  I am not over what we've been going through the past 9 months and if I had to deal with it again, I think I'll just fall down and not get up!   I lost my cool a couple of times and I just apologized--I do think that I've become more patient because of ED.   Maybe that's a blessing in disguise!  
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