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annabanana

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Hello, I am new to this forum and in fact, this is the first time I've been on any forum.  I searched for twins and I see that Patsy is the only one with twins, and the last post was a year ago so I decided to start a new one since I am not sure if she's still 'here.' 

I also have twin girls (almost 17) who have eating disorders (although I suspect their ED is feeding off of something else).  We have not started therapy yet because the hospital we want to go to has a long wait-list here in Canada (Toronto area).  But the girls are in recovery and their weight has been restored for the most part.  My twins (I will call them 1 & 2) started their recovery in at the end of September 2016.  I had to focus on 1 initially, because her weight loss was very drastic for the given time.  My 2 lost some weight but we were able to intervene relatively early, thankfully.  However, 1 began having severe psychological symptoms several months after initiating recovery which include various types of hallucinations and has a very difficult time moving forward now that her weight is mostly restored. 

I was wondering if anyone has had experiences like ours?   I have not been successful in finding others who have not just auditory but visual hallucinations and would like to hear about them.   Thank you for your time.
berry75

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Hello welcome to the forum.You will get a lot of useful advice on here.My twins are identical,16 years old, both have severe anxiety but only one has an ed.My worst nightmare is both of them having it.As one is hard enough.Glad to hear things are progressing for you.We have not experienced hallucinations.I am sure someone with some helpful advice will be along shorlty
Torie

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Reply with quote  #3 
Hi annabanana - Welcome to the forum.

Just recently someone here mentioned that her Ed-kid is reporting hallucinations - I was looking for that thread and found this one first ... I'll go look for the other one, too.

https://www.aroundthedinnertable.org/post/hallucinations-7912631#gsc.tab=0

-Torie

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Torie

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Reply with quote  #4 
Another one:

http://www.aroundthedinnertable.org/post/long-time-reader-new-to-forum-ed-voice-the-ultimate-bully-7939629#gsc.tab=0

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Foodsupport_AUS

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Reply with quote  #5 
Welcome to the forum.  It sounds like you have done a great job getting your D's weight back up. Most of us have found the longer that weight is stabilised or going up the better our kids tend to be. There has been a number of sets of twins over the years, and quite a few parents have twins with only one affected. I think toothfairy has twins too. We also have a few with siblings who both have 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.
annabanana

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Thank you all for your encouragement and comments.  Thank you Torie for the links. 
Like berry75 both of my girls suffer from anxiety as well but it only translated into ED last year, and only twin 1 is affected by it neurologically.  The links Torie sent has almost identical descriptions of what 1 describes--first time reading about it anywhere!   Thanks again!

I wanted to ask what the next step should be, as I wait for the family therapy to begin in May and what we can try to help them fear food less. 
Twin 1 has really kept 2 from getting better because she cannot eat more than 2 for the obvious reasons.  In order to make our meal time manageable, I've done two things: Put a barrier so each cannot see what the other eats, and made them pick their plate randomly (plate A or B) at meals.  We've done this for about a month, and I feel that if I don't make a change, the girls will be stuck until May.

Should I continue to stabilize eating anxiety or should I expose them to their fear more regularly? I wouldn't do it every meal because 1 hallucinates more when she's anxious (and the voices are often deafeningly loud so it paralyzes her) and results in nightmares.
I see that many of you are walking ahead of me in this journey, and I can't say thank you enough for sharing your thoughts with me!

 
annabanana

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I forgot to mention that we call the 'voice' Wickham because he's wicked. (it's a male voice)    Usually it's Wickham that talks/screams although she says sometimes it's her own voice.

And we try to laugh about her hallucinations if possible.  One time we went to see someone and after we rang the door bell, I said, listen for the dog because that's what comes to the door first if she's home.  We all stayed quiet for a couple of seconds when 1 says, "I hear voices."   No one was home.  But we all started laughing.
Thank God for these moments!!  : )
Torie

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Reply with quote  #8 
Quote:
Originally Posted by annabanana
I wanted to ask what the next step should be, as I wait for the family therapy to begin in May and what we can try to help them fear food less.  


What I have learned is that the only thing that really matters is getting the weight back on ... and the sooner the better.  I think it's very clever how you are offering Plate A and Plate B and putting a barrier between them.  Great ideas!

Most here have found it's best to keep them out of the kitchen and grocery store - it's your job to plan, shop, prepare, and plate - their only job is to eat what you serve.  The other thing is keeping the serving as small as possible while packing in the most calories you can.  For that reason (and also because brains are made up largely of fat and need plenty of fat for brain healing), we add canola oil, butter, heavy whipping cream wherever possible.  It amazed me to find that if you stir canola oil in vigorously, it doesn't change the flavor or texture - you can experiment to see how much you can add, but generally at least a tablespoon or two per cup of soup.  And full fat milk, yogurt, cheese is also important.  Grind up nuts and add them to all kinds of things.  For grilled cheese, butter both sides of the bread.

I have no idea, of course, if the hallucinations are AN related or due to something else.  I was surprised to learn that hallucinations are much more common than I previously realized, which may give you some comfort.  Still, I'm sure you will want to have her assessed to see if there is something else going on ... but be aware that many here have received diagnoses of all manner of mental health issues that magically disappeared when the weight was restored.  Whatever remains can then be treated more effectively.

Please feel free to ask all the questions you like, and please keep us posted on your girls.  xx

-Torie

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annabanana

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Thank you toothfairy and Torie--thank for some great questions and tips.   All my girls are home, doing online school and my 3rd one (14 yr) has sort of designated herself as her older sisters' nurse, so she helps me with setting the right portions, menu ideas, and check to make sure everything has been consumed and not in anyone's pockets or bras. : )     Of course, this is all due to my twin 1, who feels that everyone, including twin 2, are out to make her fat, so we do this to show her that there's a quality control in place to make sure I'm not intentionally giving her more, even though she cries about it every night. 

Last week, I ordered a chicken skewer and divided equally between the twins, and 1 thought I gave her more but she bravely started eating it until 2 dropped a part of her chicken on the floor and 1 just balled up in the middle of the food court area and cried and we stood there for about 40 minutes waiting for her to calm down. 

We have not had any therapy for the twins yet, so I am only going by what I've read in books, online, and good ol' common sense and a mom's intuition, which I find to be the best source!  XD  The most discouraging thing though, I heard was a ED psychologist tell me that there's no program in place for twins because of the complexity of having 2.  But at night, I do ask the girls to tell me what they are feeling--I am so ugly because I am fat, my thighs are getting so fat, I want to kill myself, etc--and I have them write them down and we talk/cry about it.  It's the same thing over and over again.

I am hoping to challenge my girls to be okay with eating different foods soon.  Any thoughts would be appreciated! 

 

Foodsupport_AUS

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Reply with quote  #10 
It sounds like you have been carrying on bravely with little support. Have you read the FEAST brochures yet? Look for the Family Guide Series  This explains much of what is going on with your D's. It helps to not expect things to make sense at the moment. There is only one thing you need to be doing with your Ds at the moment, and that is to be feeding them as much as possible. It sounds like from what you are saying that they may still have a significant amount of weight to gain. It is normal for someone with an ED to have the thoughts your Ds are expressing, but to be honest I am not sure that asking them to express this is particularly helpful. Recognising their distress on the other hand and empathising how hard things are for them can be helpful. I am also not so sure about involving your younger D in this. 

FBT generally assigns the role of caregiver only to the parents. Siblings are encouraged to be neutral agents, able to give empathy and support but not tasked with the role of helping to restore weight, make sure food is eaten. 

Have you thought about doing meals separately? Feeding less ill child first then feeding the one who is struggling more? The complaint about someone having less is again a typical ED ploy. For me my D always compared my food intake to her own. Learning how to not respond to this, and encouraging that we each have our own needs, and you will feed her what she needs is the thing to aim for. More easily said than done. 

I would also not fuss about the absence of therapy for twins. They need treatment individually not as a pair. They have their own needs, their own thoughts, their own concerns. 

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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 Foodsupport_AUS
There is only one thing you need to be doing with your Ds at the moment, and that is to be feeding them as much as possible.  

  
Yes.  It took me a long time to realize that the only thing that really matters is getting their weight up.  

Unfortunately, that's also the hardest thing - it seems like the hardest thing in the world, I bet.

Try not to engage in conversations about portion sizes, relative portion sizes, ingredients, calories, anything at all related to eating/weight/size/shape.  They aren't rational about those things - they. just. aren't.  And there is nothing to be gained in trying to have a rational conversation with an irrational person.  Something like, "I'm sorry this is so hard" is about all you can do for them.  And then change the subject.  

I can't remember if I already posted this for you or not, but this video by forum member Eva Musby was a huge help to me:



Sending strength and hugs, xx

-Torie

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Torie

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Reply with quote  #12 
P.S. Forgot to say I share FoodSupport's reservations about involving sibs as feeding helpers.  I wonder, though, if she  (younger sis) could help out by distracting one twin while the other eats or, especially, after they eat?  Sibs are often great at getting a (non-food) conversation going and thinking of little activities to pass the time. 

Keep swimming. xx

-Torie

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mjkz

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Reply with quote  #13 
Quote:
The most discouraging thing though, I heard was a ED psychologist tell me that there's no program in place for twins because of the complexity of having 2. 


I think too it is because they need to be treated separately as two different people rather than twins.  I agree with TF that maybe looking at getting the Twin 1 into an inpatient treatment facility and splitting them up so they can each focus on their own recovery would be an important thing to consider.
Playball40

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Reply with quote  #14 
I have fraternal twins b/g, but only the girl has RAN.  The boy, however, is very much like me in that he only eats a limited number of things and is adverse to trying new things.  Interestingly, my daughter with RAN eats a greater variety of foods than he does.
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Caroline
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Reply with quote  #15 
Hello and welcome to the forum.

My d experienced visual hallucinations during re-feeding. I will never forget the day she stopped eating her lunch and just stared at her pizza and said "I see a fat lady sitting on my pizza". I was floored.

I really believe it is so important to find some humor in all of this. A good laugh helps relieve stress and is a nice change from the constant worry and tears that come with caring for our children who are suffering day in, day out.

You will find valuable information, experience and support here on this forum. Good luck and keep us posted.

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14 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and now chasing growth and taking one meal at a time.
annabanana

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Reply with quote  #16 
Thank you everyone, again. So much to learn!

We've established a routine that my twin 1 is satisfied with (most of the time), but I have a feeling we will be here in the same place with the same issues (you gave me more than twin 2) rising until we push to try something different.

But is that necessary as long as she is continuing to eat well (her metabolism seems to be kicking in because her weight has stabilized and she's not really gaining more weight)?  In other words, what is more needed: Challenging fears or Consistency?

I am not sure whether I should be happy with the fact that she's eating what I'm giving her (as long as it's same amount as T1) or I should be thinking of ways to conquer fear foods like juice and fries.  Our first family therapy is 2 months away still.

IF we need to push her to try her fear foods, how would that play out?  Is that something we should wait until the therapy starts?

Also, inpatient program is not an option we have currently unless we go farther to a private institution which we can't afford. I know some of you are in a similar situation--we are not only supporting our own family but our aging parents and it's something we can't 

Thank you.
annabanana

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Reply with quote  #17 
Thank you everyone, again. So much to learn!

We've established a routine that my twin 1 is satisfied with (most of the time), but I have a feeling we will be here in the same place with the same issues (you gave me more than twin 2) rising until we push to try something different.

But is that necessary as long as she is continuing to eat well (her metabolism seems to be kicking in because her weight has stabilized and she's not really gaining more weight)?  In other words, what is more needed: Challenging fears or Consistency?

I am not sure whether I should be happy with the fact that she's eating what I'm giving her (as long as it's same amount as T1) or I should be thinking of ways to conquer fear foods like juice and fries.  Our first family therapy is 2 months away still.

IF we need to push her to try her fear foods, how would that play out?  Is that something we should wait until the therapy starts?

Also, inpatient program is not an option we have currently unless we go farther to a private institution which we can't afford. I know some of you are in a similar situation--we are not only supporting our own family but our aging parents and it's something we can't 

Thank you.
annabanana

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Reply with quote  #18 
Thank you everyone, again. So much to learn!

We've established a routine that my twin 1 is satisfied with (most of the time), but I have a feeling we will be here in the same place with the same issues (you gave me more than twin 2) rising until we push to try something different.

But is that necessary as long as she is continuing to eat well (her metabolism seems to be kicking in because her weight has stabilized and she's not really gaining more weight)?  In other words, what is more needed: Challenging fears or Consistency?

I am not sure whether I should be happy with the fact that she's eating what I'm giving her (as long as it's same amount as T1) or I should be thinking of ways to conquer fear foods like juice and fries.  Our first family therapy is 2 months away still.

IF we need to push her to try her fear foods, how would that play out?  Is that something we should wait until the therapy starts?

Also, inpatient program is not an option we have currently unless we go farther to a private institution which we can't afford. I know some of you are in a similar situation--we are not only supporting our own family but our aging parents and it's something we can't 

Thank you.
annabanana

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Reply with quote  #19 
Thank you everyone, again. So much to learn!

We've established a routine that my twin 1 is satisfied with (most of the time), but I have a feeling we will be here in the same place with the same issues (you gave me more than twin 2) rising until we push to try something different.

But is that necessary as long as she is continuing to eat well (her metabolism seems to be kicking in because her weight has stabilized and she's not really gaining more weight)?  In other words, what is more needed: Challenging fears or Consistency?

I am not sure whether I should be happy with the fact that she's eating what I'm giving her (as long as it's same amount as T1) or I should be thinking of ways to conquer fear foods like juice and fries.  Our first family therapy is 2 months away still.

IF we need to push her to try her fear foods, how would that play out?  Is that something we should wait until the therapy starts?

Also, inpatient program is not an option we have currently unless we go farther to a private institution which we can't afford. I know some of you are in a similar situation--we are not only supporting our own family but our aging parents and we can't choose one over the other at this time. 

Thank you.
Torie

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Reply with quote  #20 
Quote:
Originally Posted by annabanana
In other words, what is more needed: Challenging fears or Consistency?


What is needed is more nutrition.  End of.   That's how I would frame it.  How can you get their weight up the most, the fastest?   

As ToothFairy said, you're doing brilliantly.  Really.  This is a long, tough war, and you have already won some key battles.  

Can you add more fats, more calories to their meals and snacks?  xx

-Torie

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Foodsupport_AUS

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Reply with quote  #21 
I would agree with Torie, what is going to be needed is more nutrition. I would again also suggest trying to separate out meals so no comparisons can be made. Keep pushing as much food in as you can. When you do get to therapy, don't expect much to change. Eating disorders change with the slowness of  a glacier. The most important thing to happen is that food is going in, their weight is going up consistently. If you are meeting high resistance I think getting anything in you can is the most important rather than looking for challenging foods. You are managing amazingly well on your own. I assume that if your D's were becoming more medically unwell you would be able to access treatment earlier, but that because you are "managing" is the reason for the delay?
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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  #22 
Different meals for different twins like Foodsupport_Aus has suggested.  That way there is no comparing and no eating just as much or as little as the other twin.  If you have to do the same meal, I'd feed them at staggered times in different rooms too so that they can't compare and make sure they are eating the same amount.  As for fear foods, etc., you know your daughters the best.  With my daughter, I just started Magic Plate and she got everything all at once.  Others here have taken a more gradual approach of making a list of fear foods and challenging one at a time and repeating that fear food until it is no longer one. 
annabanana

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Reply with quote  #23 
Thank you all for sharing.  Sorry I've not been able to get a decent internet for the past few days to reply.

I will see how I can implement your suggestions to try and see if they will help the girls.  

re: refeeding--I am wondering when do you know to 'normalize' the amount of calories?  Both twins' weight has been restored for over a month (2+ months for twin2) and now they carry a little pouch from eating more than they used to before.  They are crying about it at times, but I figured this is normal. Do I keep increasing their caloric intake even at this point?  And for how long if I need to?  What are some things I need to keep in mind?  
Torie

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Quote:
Originally Posted by annabanana
Both twins' weight has been restored for over a month (2+ months for twin2) and now they carry a little pouch from eating more than they used to before.  They are crying about it at times, but I figured this is normal.  


Yep. Normal. Unfortunately, the weight first goes to the belly and the face ... after a while it does redistribute. xx

-Torie

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Foodsupport_AUS

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Reply with quote  #25 
Annabanana since you mentioned before that you have not yet received treatment, are you sure that your D's are weight restored? It is common as Torie has said for kids to get some bulges initially, including before they get to full weight restoration.  Stopping to soon with weight gain can be an issue. Many of us have felt that worry as we have watched our children gain weight. It is hard to put on too much. Increased calories are generally required for at least six months after weight restoration, and for some longer than that. 
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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.
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