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mjkz

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Reply with quote  #26 
I'm so sorry Francie.  I do agree it is important for families and clinicians to give the same message.  My advice would be:
1.  Do things in writing if you can. 

2.  If you do call, keep meticulous records of who you spoke to at what time and what he/she promised.  I actually recorded all calls I made to insurance companies. 

3.  Be brutally honest.  I would describe what life was like going into residential and what is happening at PHP, how you see her slipping back to what was going on before residential.  It seems obvious that they stepped her down too quickly. 

4.  You are going to run into problems if your daughter is not telling her clinicians what is going on and being honest about her symptoms.  One word of advice I always give people when seeing their doctor is describe your worst day and what that is like for you even if you are having a better day because your team needs to know what your worst days look like.  Until your daughter stop minimizing her symptoms and comes clean though, you are fighting a truly uphill battle that you have little chance of winning. 

5.  Ask her to keep a diary of what she is eating or not eating in this case, any purging, etc. so you have factual proof.  Her clinicians can only share what she shares with them so I wouldn't hesitate to offer to share what is really going on so they can help you make the best case possible. 

6. Tell your daughter the only way anyone can help is if she is honest and stops minimizing. Offer to talk to her clinicians if she truly cannot be honest.  I would write a letter to the clinicians and show my daughter beforehand.  Often times she too couldn't be honest about how much she was struggling but reading my letter she would often offer suggestions that really clued us all in as to how hard things were for her.

7.  State very clearly what your goals are.  She needs more support and needs more time in residential.  Repeat often and include this in everything you write and every call you make.

8.  Document, document, document and when you are done with that, start over.  Insurance companies want to save money and you need to keep at them with as much proof that your daughter is not doing well at the lower level of treatment.  Make sure you know what her weight and vitals are doing.

9.  Keep clinicians up to date on what you talk to the insurance about.  I met on a weekly basis with the team to share what I was getting and to enable them to help as much as possible.  Be brutally honest with them too about what you see happening, what your daughter has not shared with them and let them help you fight.

10.  Good luck and take care of yourself.  Your daughter is lucky to have you in her corner.  If ever you need help with writing stuff to the insurance, etc. drop me an email. I have a medical background and have fought this battle too many times with my daughter.  I love to help people fight and win [biggrin]
Kali

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Reply with quote  #27 
Hi Francie,

Sorry that your daughter got moved too quickly. The insurance companies really don't understand this illness and that is _______(fill in bad word of choice).

Since she has Sundays off is it possible for you or your husband to go up and plan to spend those days with her and eat those meals with her? That could cut down on the skipped meals. There are lots of fun things to do in Boston, maybe you could plan some things with her. I don't know what your work situation is but I think you mentioned once that you work from home? Would it be possible for you to go up and stay somewhere in Boston for awhile and have those meals with her that she is skipping during the week? Maybe it is too early for her to be eating on her own. Also let the therapist know when you have a family meeting that she is finding it hard. Perhaps based on that, they can get permission for her to go back to residential? How is she doing with weight restoration?

There is also this option:
http://eatingdisorderspecialists.com/services/meal-support-coaching/

Which I have also considered, and I know they work up in Boston. They have meal coaches who can meet clients for meals, where ever they want, and be additional support. I think it is a really interesting concept. Perhaps if you cannot spend more time up there and the insurance company will not reauthorize more residential stay, your daughter could meet a coach for some meals every week? I spoke with the woman who started this service a couple of years ago and thought it was a great idea.

Our insurance company also told us that our d. would be authorized for 19 days of residential treatment, which was certainly not enough.

Kali

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Francie

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Reply with quote  #28 
Hi HateED, mjkz, Kali,
Thank you all for your support and ideas, it is all very helpful.
My h and I will meet by phone with our d and her t in a few hours. My h has planned a very good way of bringing up our d's struggle without embarrassing or 'outing' her, so he will take the lead.

HateED, Lining up the USCD program for yourself and your d sounds like a good idea. We are sort of in the same place at the same time with our d's so we are going through this together. 

Mjkz, Thank you. With your background and your experience you have given me some wonderful ideas to bring to our meeting today and in further conversations with insurance. Do you think it's true that the insurance co would be kinder if we were using a contracted ED facility? 

Kali, we are in Boston for some meals on Sunday, and certainly I can drive up there for some others, but we are still super wimps when it comes to getting her to eat all of her meal and to eat snacks. I'm embarrassed to say that my only way of supporting her during meals is to overeat because I know she doesn't like it when someone eats less than her at meals. So, I have called the service you recommend since I think that is a good idea for us.


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byebyeED

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Reply with quote  #29 
Francie, I'm so sorry you find yourself in this situation.  A couple of things that helped us was to request a case manager through our insurance company.  She was really able to give us suggestions of what to say and do to keep our daughter in treatment as long as she needed.  Another thing that we did was to request an "out for in" (used to be called a single case agreement), which is an agreement with our insurance company that even though our treatment provider was out of network, they treated it as "in network".  We had to have her doctors write a letter, as well as provide proof that what we were doing was necessary.  We wrote a letter too, telling all the treatments that we had tried up to that point.  We were fortunate that our insurance company was agreeable to FBT, and we didn't have as much of a fight as we expected, but we were willing to do whatever we had to to get her the help she needed.  She is thriving now because of it.
mjkz

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Reply with quote  #30 
Quote:
Do you think it's true that the insurance co would be kinder if we were using a contracted ED facility?


I can honestly say I've not noticed a difference beyond admission.  It is harder to get admitted out of network but insurance seems to be just as stingy and pig headed about length of stay in an in-network as it is with out of network.  My daughter has had more admission than I truly want to count and it has been pretty evenly split between in-network and out.  My experience with fighting with them has been the same.

One thing I have learned is to include all diagnoses besides the ED.  Depression, self injury, suicidal ideation, OCD, etc.  All help with length of stay.  One place my daughter was at, the insurance company gave her a month more due to depression and suicidal ideation rather than anorexia.

Sometimes you have to be creative too.  For instance my daughter is on a Concerta for depression.  Concerta is slow release Ritalin and not FDA approved for depression so when we have to do an prior auth and ask for an exception (which is pretty much 100% of the time because she is over 18 and I guess insurance companies don't realize that people over 18 do have ADHD), we have to make sure we justify that Concerta to help with concentration problems brought about by depression.  The prior auth sails through that way but we can't get it if we list it as an antidepressant.

At one place, my daughter had gained 5 pounds (and she needed about 40 to enter the lowest rung of a health weight range) and the insurance company decided she was okay to be discharged to PHP.  PHP refused to admit her because they knew as we all did that she was not ready and it was going to be a disaster.  My daughter wrote a letter to the insurance company and we included that. She did one heck of a job of listing her treatment goals and the steps she could take only inpatient to reach those.  I don't know if your daughter is in any shape to do that but unfortunately mine never lost the ability to do that even at a low weight.  I think the fact that she could function at such a low weight made getting her to gain so much harder.  Even if you wrote a letter and took direct quotes from what your daughter told you, it can be helpful.  Mine told me point blank at one place if they discharged her, she would kill herself and you better believe that was in my letter and all my phone calls along with a promise of a wrongful death suit if she followed through with it if they discharged her.  It sounds horribly manipulative on one hand but unfortunately needed on the other hand.

Another thing I have found immensely helpful is finding a good case manager at the insurance company.  We had one that we worked with for years and she was so damn good at getting what we needed.  She would send things back to the hospital with "suggestions" for recoding and worked behind the scenes to help.  She talked to my daughter and took her seriously.  A good case manager can be your best friend!!
Francie

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Reply with quote  #31 
Mjkz, Your letter above is brilliant, thank you. So helpful. It is interesting that the case manager at our insurance is the one I talked to, but your idea of adding additional diagnoses to her issues (which would be truthful) is a very good idea. Thank you!
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mjkz

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Reply with quote  #32 
No problem.  I also emphasized how all the issues needed to be treated at once which could be done on an ED ward but not in general psych because most general units don't do anything much with eating disorders.  We had plenty of factual evidence that treating one diagnosis without treating the others just led to trouble.  I hope you can get them to listen to you and get her more time.
Francie

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Reply with quote  #33 
Hi Friends,
I hope this finds all of you doing well, and your loved ones, too.

With mjkz's advice, my husband wrote a brilliant, all-encompassing letter to the insurance company which bought her more time at the php she's at with supported housing: Monte Nido's Eating Disorder of Boston. We are going week-by-week with insurance now. She's been there since Sept. 18.

She's doing well, though there have been a few hiccups:

We've had some issues with the prescribing doc there but we are riding it out and letting her handle as much as possible. I learned not to criticize treatment team but rather to simply listen to my d as she complains. I allied with her one too many times in her complaints against providers resulting in discontinuation of treatment so I'm not going there again. 

She continues to skimp a little on the food she prepares for herself but I hear her tell me that she's working on it, and I see evidence of that. For now I am letting treatment team handle that one.

We recently spent an overnight together home and it was good and bad, but overall went well and was a learning experience for all of us. For the first time in a long time I was able to say 'snack time' and 'lunch time', and she responded by eating with me. Even though it is more food than I like I am matching her eating bite for bite right now even though she says I don't have to. I feel I have to.

I am attending Al Anon meetings and working with a sponsor for my own self-support and it is helping me gain strength, confidence and courage.  There are no rules in Al Anon but this one suggestion: 'take what you like and leave the rest', and I am doing that.

And there are moms I met on this forum who have helped me immensely. Either you responded to something I shared or inquired about, or you shared your own story, or provided a helpful link. There are so many of you who are helpful there are too many to name but I am grateful, XO.

I still don't like some of the choices my D is making while she's living away, but I am addressing what I can as as it comes up, and I'm letting go of the ones I have no control over. It's like I'm finally learning how to become the tough but loving mother I always wanted to be (and that she needs me to be) but couldn't figure out how to do it before.

I feel like my d has a competent T and D at home when she gets back here, so I am feeling pretty good about her plans for a step down. 

Again, I hope everyone is doing well. Thank you for 'listening', thank you for caring. XO

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mjkz

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Reply with quote  #34 
Francie, I can't tell you how happy this post makes me.  I have learned the hard way that I may not agree with the decisions my daughter always makes but as long as the decisions won't kill her in the long run, I can live with them.

Go hubby!!!  Glad you were able to find a way to get through to the insurance company and get more time.  You got a huge cheering section in my house.
Francie

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Reply with quote  #35 
Hi, I have to reach out to you experts as I am feeling very, very distressed and angry at the moment.

To recap: after trying for over 3 years to get our d into a proper level of treatment she agreed to go to residential treatment at Monte Nido Laurel Hill at the end of August. Insurance gave her 19 days then required her to step down to PHP. In the days prior to moving to PHP my d said "I'm not ready" (meaning she didn't have enough time in residential). The clinician at residential told insurance 'She's not ready". Her dad and I told insurance "She's not ready". Insurance stepped her down anyway. When the step down to PHP happened, we encouraged her to give it her best shot. 

Shortly into her stay at PHP (away from home in supported housing) she told us "This is not getting easier, it's getting harder". We sympathised and asked her again to give it her best shot. After about 5 weeks in PHP she was basically kicked out due to issues with her medicines and her not complying with recommendations from her T. We brought her home.She had been referred to an IOP in state. They saw her for 1/2 a day and got insurance to approve PHP. She went again for another day, came home and announced "I'm not going back" (my d had issues that 10 out of 12 people at table didn't finish their food - she did. I told the in-state PHP that but they were not willing to change the way they do things.) Two days later we had a family appt with her outpatient T (the one who helped our D over the summer prior to residential) and the T told our d "I'm not seeing you anymore because you're not agreeing to enter into recommended level of treatment, and neither is your dietician going to see you anymore until you go through PHP, IOP and are recommended for outpatient".

Our d has been home for about 3 weeks and the b/p behaviors have not been curbed much at all. She confessed that while at PHP she did engage in b/p behaviors. I am so very angry at the insurance company for pulling her from residential prematurely I would almost wish that those responsible would experience a loved one with an ED but I wouldn't wish that on my worst enemy. They gave her another reason to not want to recover.

I really just don't know how to handle this. Yesterday after seeing that food I needed was missing I locked most everything up and told my d that if she wants anything she just needs to ask. I said it nicely. This has not worked in the past as my d has always figured out ways to break in. I told her that if she removes food from the lockup I will take her phone away from her for 1 month. I HATE doing all this. I HATE locking up the food. I know it makes my d feel like a criminal and the level of controlling just can't be healthy, can it? Our food budget when she's home is double what it is when she's gone and my H complains about it although to be honest we can afford it but it is frustrating to reach for something and see the package on the shelf is empty. I also hate locking up the food because it may encourage that restriction/binge cycle. I really really don't know what the right thing is to do. I have been trying to be compassionate and understanding and not take a tone of 'so there!", and I think I am doing a fair job of it but I am just so very, very, very angry at how unfair, insane and illogical this all seems. I mean, who locks up food in their house?? How controlling is that??!! I fear I am feeding one aspect of her eating disorder (restricting) in order to keep food in the house. A part of me wonders if it would be better to let her have access to all the food all the time as we have mostly been doing and just require her to drop everything and run to the grocery store to replace, with her money, everything she abused.

Another part of this is, I can't help but feel this, is the thought that 'what you resist, persists', and by us in our household focusing so very heavily on trying to control the symptoms/results/discomfort of the ED just strengthens it. It's like she's become - in my eyes - the eating disorder. I so very much want to trust what she says and give her another and another and another chance and I so didn't want to get to this place. 

I work from my home and just sharing the house with the illness is so very distressing and distracting. I literally can't function at times because always in the back of my mind is the question of what's she's doing.

Next week we'll be going to Thanksgiving at relatives house and last year my young niece said to my d 'you use the bathroom a lot', so how do I prepare for this? When D appears to eat at the table but excuses herself repeatedly to 'use the bathroom'? Do I tell her she's restricted from using the bathroom at their house? Do I tell her she needs to stay in my eyesight all day? Do I just tell my family we're not coming? Again this would put the focus so heavily on managing ED symptoms and contorts our family's behaviors and interactions into something so far removed from what 'normal' people do that I doubt how healthy and how helpful it would be. That controlling her for that day would get us through the day but would inadvertently breathe new life into her ED because I think she enjoys the challenge when we try to control it.

Now my d has a seasonal retail job and soon she'll get her first paycheck. I told her that if she needs binge foods she can use her own money to buy them. Even though I said it in a non-judgemental tone, I am afraid that remark could breed a resentment and feed the ED, too.

I have an Al Anon sponsor who is trying to help me parallel food abuse with alcohol abuse. Yesterday she said 'if the alcoholic drinks all the liquor in the house would you go out and buy more?' Well of course none of us would do that but is that what I've been doing all along when I replace the cereal and sugar and you name it that disappears? My d said that what would be helpful would be to make her go out and buy and replace what she's used, and not ignore what's been eaten.  And one day this week she did that. I said 'dinner time' and she said 'i want to go out for 1/2 hour' and I said 'no, eating is more important' and she said 'i binged and purged today and i want to replace the food' and I said 'go ahead'. (but in retrospect I should have said 'eat first, go to the store later'). And in all of this how do I know it's her talking and not the ED talking to maintain free access to all the food?

So today I am calling the 'Eating Disorder Specialist' at my insurance company and suggest that she and the doctor who decided 19 days was enough residential care should find a new line of work because they are obviously not qualified to do their jobs and how do you possibly sleep at night when you make decisions that effectively ruins people's lives by keeping them sick? And I will ask 'now what do I do?'. 

Thank you for allowing me to rant. I hope you can see past my anger and give me some good advice. I feel like giving up on my d but I won't. XO

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Kali

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Reply with quote  #36 
Hi Francie

I just want to send a big hug for you.
It is appalling that treatment providers fail patients and ask them to leave when in fact it is the illness that is making it so difficult for them to comply. 

But that being said, you are in a very tough spot. Since you work at home you are, however, able to "supervise". 

What could you do to tighten up the situation at home which could help your daughter? I know you are sick of this and it is difficult but wondering if we can help you brainstorm that with some practical ideas about how to handle the everyday things which come up.

When my d. came out of treatment I was in touch with this group, Eating Disorder Specialists as a possible support. The co-founder and executive director who started it recovered from many years of bulimia and I spoke with her and quite liked what she had to say. They make house calls and cover a wide range, geographically. I think it sounds like a helpful and supportive service to bridge the gap between a higher level of care and being at home. Maybe you could talk to her and see if she has any ideas about a way forward for your family and your daughter.

http://eatingdisorderspecialists.com/services/meal-support-coaching/

warmly,
Kali

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Optimistic

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Reply with quote  #37 
Hi Francie,

Since your d is willing to go residential I would recommend the program at New York State Psychiatric Institute/Columbia.

It is a research facility so treatment is free. No insurance restrictions. They will keep your d as long as necessary.

You can read more about it on my & Kali's posts. 

One caveat. The patients cannot be on any meds bec. it would change the research results.

Good luck. This is all so hard.


Kali

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Reply with quote  #38 
Yes, Francie, I agree with Optimistic, call Columbia. I think they gave my daughter back her life. They were very good about not allowing bathroom visits after eating and that helped interrupt her purging. 

Kali

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Francie

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Reply with quote  #39 
Thank you, Kali, and Optimistic. In addition to no therapist, no dietician, no psychiatrist, but my d now has no motivation to get better at the moment. But I have reached out to both providers, so thank you both!




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Francie

Torie

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Reply with quote  #40 
Hi Francie - There have been some good posts about dealing with insurance companies - if you would like help finding them, please let us know.  One thing that helps, I think, is explaining that they can a) buck up and pay for whatever length of treatment is needed or b) pay for the same treatment over and over and OVER, which actually costs them more.  I can't remember the name (case manager?) for the person who is sometimes able to help sort this out.

A few random thoughts:

Quote:
Originally Posted by Francie
Next week we'll be going to Thanksgiving at relatives house and last year my young niece said to my d 'you use the bathroom a lot', so how do I prepare for this? When D appears to eat at the table but excuses herself repeatedly to 'use the bathroom'? Do I tell her she's restricted from using the bathroom at their house? Do I tell her she needs to stay in my eyesight all day? Do I just tell my family we're not coming? Again this would put the focus so heavily on managing ED symptoms and contorts our family's behaviors and interactions into something so far removed from what 'normal' people do that I doubt how healthy and how helpful it would be. That controlling her for that day would get us through the day but would inadvertently breathe new life into her ED because I think she enjoys the challenge when we try to control it.


Hmmm ... I'm not sure I understand what your options are.  If you take your d for Thanksgiving, she will purge, right?  And if you stay home, she will also purge?  I feel like I am missing part of the equation, but if the result for your d is the same both ways, I would go if that is what works best for everyone else, especially you.  But if it would be simpler / better to stay home, well, that sounds like the better option.

I wonder if there is any way  you could do your work in the kitchen or near enough to see what's going on in there.  

I also wonder if it would be possible (at Thanksgiving or other) to seat D in between you and someone else who agrees not to move out of the way, thus pinning your d in and preventing visits to the bathroom.

I'm not sure where this quote came from: 'what you resist, persists,'  but in my 3 1/2 years on the forum, I would say it is quite the opposite with ED.  When you DON'T resist ED, it persists seems to be the rule.  Keep fighting the bastard.

Hang in there.  xx

-Torie

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mjkz

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Reply with quote  #41 
Francie, can I make an observation?  She is repeating the same pattern again with finding something wrong with a treatment program, deciding not to go and you are supporting that decision which is not a good decision I don't think.  She might be the only one eating everything and no one else but so what?  She is losing her outpatient team because she won't follow through on treatment and things are back to the way they were before she went.  I think you really need to enforce some rules about her attending the IOP that she was referred too because you are running out of options here.  I'm sorry if I'm missing something but it really seems that she is making bad decisions and rather than enforcing that she follow through, you are instead looking for another provider for her to go too.  No provider is ever going to be perfect and she is always going to find some reason not to go.  I hope you can get into Columbia but that would mean she has to come off all her meds and if she has any comorbid diagnosis other then ED, then they won't admit her (they were my treater of last resort and wouldn't take my daughter due to her PTSD).  I ran out of options with my daughter and had to do it at home.  I think you are approaching that yourself right now and it is horrible.

I'm so sorry you are going through this again.  I can only encourage you to take a step back and reevaluate whether supporting your daughter quitting this IOP/PHP program is really a good decision for her or you.  Please know I am only saying this because I've done it myself and I don't want you to end up where we ended up.

Quote:
 'what you resist, persists,' 


What you allow persists, not what you resist.
Francie

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Reply with quote  #42 
Thank you for your response, mjkz, I needed to hear that. XO
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mjkz

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Reply with quote  #43 
Quote:
Thank you for your response, mjkz, I needed to hear that. XO


Thanks for hearing it like I meant it.  Strength and good thoughts coming your way.
HateEDwithApassion

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Reply with quote  #44 
Francie,

Oh, you have been so supportive of me, and yet, you are going through an equally difficult time. I'm sorry. We seem to be doing parallel things - with Ds who resist treatment, refuse to go, etc. I can see why you are frustrated and having trouble separating your D from the ED.

I think mjkz makes an interesting observation. There does seem to be abe a pattern. My D exhibits the same one. I too share your frustration about having treatment lengths too short for true recovery. Columbia is an option - and one I am still considering for us, too, if needed and they would take my D. What about the UCSD or CBL program? As a jump start? 

I'm here - not always with brilliant insights, but to listen and let you know you are not alone.


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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.
Francie

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Reply with quote  #45 


I'm here - not always with brilliant insights, but to listen and let you know you are not alone.

Back at you, HateED. What a kind thing to say. I am hopeful for you and your d. XO

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Francie

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