F.E.A.S.T's Around The Dinner Table forum

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caporegon

I’d really appreciate advice from seasoned AN carers on a tough decision we face.

Our 14 year old daughter was diagnosed with AN in mid-Feb (3-4 weeks ago). We discovered it early, before she became gravely ill and underweight, so she is not in great medical danger currently, but the eating disorder is digging in and fighting hard against our struggle to keep her from losing more.  I am a professor and we have a sabbatical year planned. We have plane tickets to leave for Oslo, Norway in mid-July, staying there for the school year. We have to make important housing decisions this week if this sabbatical is going to happen. Decisions are upon us. Should we still go?

On the one hand:

  • We don’t yet know where things will go with our daughter, of course. It is a huge risk to make a bet about the situation four months from now.
  • The sabbatical year will also mean moving away from most of our friends/support network. 
  • She would have the stress of a new school setting.
  • We are actively building a care team for her (and for my wife and I), which has been far from easy, but so far we have a great ped and dietician, and the possibility of a FBT therapist who lives an hour away.  We will be considering a residential program, though it is 2 hours away. No partial inpatient is available for teens in our town. 
  • We want to signal to her that we will do anything necessary to help her through this. 

On the other hand:

  • We have four months. She may well go into residential soon. Then we would presumably have a couple/few months to stabilize our family-based routine before we leave.
  • Taking her out of the setting where her anorexia developed could be beneficial.
  • Sabbatical time will also be intensive family time, where all of us have more time to be together and fewer distractions.
  • She has spent a year in a new school abroad before (in France in 1st grade) and did very well; she isn’t thrilled about going to a new school for 9th grade, but hasn’t seemed overly concerned about it.
  • We haven’t yet researched this, but Norwegian health care (and mental health care) seems likely to be at least as good as American. Plus we can probably keep ties with some of the team here by Skype.
  • Does altering this giant family plan early on in this struggle send an undesirable signal that the ED has power over everything?
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scaredmom
Hi caporegon,
I welcome you to the club that no one would willingly join. I do hope you get the support and information you need to help your d.

It is a hard question to answer as it is such a big decision and huge move. She has only been diagnosed recently and it is so, so early. It is a hard battle and many of us have had to take off work to feed our children. As for time lines, it took me 4 months to get good weight on my D and it took a really good routine. We went away twice for 4 days first and one week later in the first 4 months as I needed a change. It was not easy, the first 4 day holiday we took. D was comfortable at home in her routine and so was I to be honest. It was OK but I think at 4 months it was too early for us. Now you would be moving for a year and so will be stable when you get there, so that will be helpful. It seems too, that you have good medical support where you would be going.


No matter where you are, refeeding is hard. I think having a plan for all eventualities (like you have above) is really helpful. 
There is no way to predict what will happen. As you say you will have more family time and that is a good thing, overall. 

Just a question: would you be able to take the sabbatical a bit later to ensure that your D is a lot better overall? 4 months is a short window in terms of ED.


Others with similar experiences should be here shortly. 

Please ask all the questions you have. 
XXX

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Ronson
Hi - we went for a 4 day trip after about 4 months - d was eating well and officially weight restored - it was ok - but stressful - she was out of routine - food was different - I was worried it wasn’t enough, that we couldn’t find anything she would eat.  

I don’t think we could have coped with a year away - I personally have needed my support network to vent and cry and walk.  D has needed the stability of her friends and school and routine. 

Once we got d eating well she was fairly reliant on particular foods - this is improving now but only about 8 months in.  In Norway the foods will be different; there will be language barriers with any type of therapy (I assume).  She may thrive with the change or it may be hugely stressful.  
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caporegon
Thanks, Scaredmom, for a quick and thoughtful reply.

We are trying to figure out how long we can postpone going over there, to leave us that margin for maneuver if we feel we need it come July. The stressful thing right now is some pressure to pull the trigger right now on renting our house and renting lodging there. We found dream renters who are willing to take care of our beloved cat. Once we confirm that, we'd have to be out of our house by August 1. In principal our daughter will also start school over there in the teens of August, so we'd presumably want to arrive a couple of weeks before that. So one possible route is to say now: yes, we're going to take a risk and stick with the sabbatical plan overall, but change our plane tickets until early August to buy us one more month to get on a more stable track.

The other possible route is to back off from the renters and the house in Oslo. Then the only time constraint would be her school in Oslo, though we could also back off from that to home-school if need be. We will probably be able to rent out our house, and will definitely be able to find something in Oslo. This is stressful, though, because renting our house well helps pay for the sabbatical (which is very important when going to such an expensive place), and because the house we've found in Oslo would be extremely comfortable and seems like it would make the whole stay over there easier for all. So in this scenario, we loosen the constraints on time to deal with the ED, but magnify uncertainties and stresses about what happens next year and how comfortable the sabbatical will be. 
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caporegon
Thanks, Ronson. That makes tons of sense. I suspect language barriers with caregivers might not be too bad---educated Norwegians generally speak ridiculously good English---but what you say about sticking to your support network is obviously a huge consideration.
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mimi321
I would say it is a bit of a gamble. Is she gaining regularly now? Is so, by how much each week? How much weight would she need to gain to get at or above her historical growth curve? It took us two months to get into a pattern of regular weight gain, and from there, four months to get to a good weight and state. Prior to that a major trip or transition would have been a no-go. It is best to dedicate your resources to this illness early and for a sustained period wherever possible for good outcomes. I would be concerned that she might not be recovered in time for the move, that would add a lot of pressure to an already highly stressful situation.
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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scaredmom
If you go, please be aware that your d may not be in a state to go to school. That needs to be factored in too.
You really have thought about all the details.
I tend to think about contingency plans too.
I prepare for the worst scenario and hope for the best.
When you get there is there an option if d needs to come home, is that doable? 
This is not easy, I know. I do feel you are very able to see all the options available to make the best educated decision about your circumstances.

 I wish we had a crystal ball to see the best future and make that choice.

XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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tina72
As far as I know there are no FBT therapists in Norway and your insurance will probably not pay for therapy, treatment or hospital abroad as it is a psychological disease and often insurances do not pay for that.
You will be completely on your own there in a foreign country. No friends, no relatives that can help you.
To be honest, 4 months is nothing with this disease. You will take a sick child with you.
New school, new friends, new food, that is a lot of stress in addition.
Sorry to be so blunt, but I would try to postpone that for at least next year.

If you decide to go, make sure you can change that decision if needed within a week or so. It might be necessary that you go home if it does not work.
Keep feeding. There is light at the end of the tunnel.
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caporegon
I appreciate the bluntness! Thanks---really.
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tina72
I am sorry for you. But we did not even dare to go on holidays for 10 months and that was only a 3 day trip. First normal holidays were 1 year after weight restoration (1,5 years after diagnose). Changing places is a very hard thing during refeeding. You take all the negative things with you and often lose the positive ones. Our first 3 day holiday was mostly stress.
Keep feeding. There is light at the end of the tunnel.
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caporegon
That makes sense. It is really tough, though: we can't postpone to next year, when I won't be able to leave my work here. Might be able to postpone to December and still go then, which would give us a lot more time.
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tina72
Most of us needed to give up work for some time during refeeding and maybe this sabbatical is just be good to use for that. You will need to supervise your d 24/7 and meals will take hours and it is very exhausting for a long time. We say here it is a marathon and not a sprint. So maybe just not to need to work will be very good.

All things with AN take MONTHS. You need weeks/months to get her into IP when you are on a waiting list. Then she might be probably for weeks/months in IP. After IP you need weeks/months to get her to eat at home. To get her eat all things again. To work on fear food and bad ED behaviour. That all takes a lot of time. My d was diagnosed in 01/2017 and brain recovery started about 10/2017. The fear food list was done in 10/2018. She started University then and looking back she was in good recovery then. So I would say it took us at least 1,5 years to see her in good recovery.
This is just our personal timeline but shorter ones are rare.
Keep feeding. There is light at the end of the tunnel.
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Ocras68
Hi caporegon, I’m sorry you are in this situation.  My daughter was also 14 when diagnosed last summer.

ED causes stress, and moving to a foreign country and starting a new school causes stress, and it may be far too much in combination.  

It sounds like you have the advantage of your daughter not being seriously underweight, and therefore weight restoration hopefully won’t take as long as for some, but I would still say that four months is a very short time in the life of treating this illness.  It requires many many months/years of structured re-feeding and a regular routine, because even when weight is normalised, the behaviours and thoughts lag behind, and you have to keep things on track.  This is going to be difficult.  It’s almost certain that your d will still need supervision for meals and snacks by the time you go to Norway.  How will that work in a new school with teachers you don’t know and she neither knows nor trusts?  And keeping her out of school is not the best start for building friendships.

The food will be different.  Although many people in Oslo speak fluent English, all the labelling on foodstuffs in supermarkets will be in Norwegian.  This may sound like a little thing, but it will be huge when you’re getting to grips with finding high calorie foods, making familiar dishes (one of the aspects of treatment is to ensure that what was eaten before ED can be eaten again), dealing with what your daughter will eat without resistance, and tackling fear foods.  

Don’t underestimate your need for your support network.  I know from experience that living in a foreign country is a great adventure when everyone is healthy and happy, but the need for “home” is huge when things aren’t well.

This is not to scare you but just so you are aware: If the ED is fighting back hard and your daughter is placed under stress by the change in her surroundings, you need to consider the risk of her starting to purge.  How will you remove bathroom locks/bedroom doors etc in a rented house?  

When I read your post first I thought “oh maybe they can make it work”.  And maybe you can.  If you are on sabbatical that is a big advantage as you will be there on hand rather than out at work.  But this is a hard, horrible illness.  My daughter was one of the “easy” ones - no physical resistance when we took over feeding, no purging, no need to even consider IP, although she was very underweight and had an exercise compulsion.  And knowing what I know now, I am glad we were settled at home with no life changes going on.  Dealing with ED was more than enough.

I’m sorry this is probably not the news you were hoping for, and I’m sorry you’re in this position.  The opportunity to live abroad is so exciting (I miss those days) and everyone’s situation is different.  I wish you strength in making your decision, whatever it may be.  And of course, if you do go, you can still access this forum for help and support.

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caporegon
Thanks for your very relevant experience, Ocras68. Much food for thought, as it were. I'm extremely grateful to this group for such quick responses. What a resource!
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HopeNZ
So sorry you had to find us here, Caporegon.

I'm very much of the same mind as Ocras68.  My first thought on reading your post was that it may well be do-able.  In fact, there are potential advantages to a spell away from her current environment (my d did really well on short trips away during refeeding, as she seemed to want to demonstrate to everyone - including herself - how well she was doing).  And it would be so good to show that evil monster ED that it won't control your lives!

But I'm sorry to say that for the next wee while (and it's impossible to say just how long that will be) your whole focus really needs to be on kicking that cur to the kerb.  I think the practicalities of shopping for high calorie groceries, and finding day-to-day support for you as parents shouldn't be underestimated.  And I also hear what you say about demonstrating to your d that you're determined to do everything you can to help her recover.  Also, will you really be able to make the most of the  experience of being there if you're still in the trenches of refeeding?

As frustrating as it may be to forgo your dream tenants, could you possibly delay until December?  If all goes well (and with the proviso that recovery isn't a straight, predictable line) in a few months' time you may have a much better idea of how things will be at the end of the year.  I wonder if this might also give you an opportunity to investigate FBT options and back up medical options in Norway, and perhaps make contact with people over there who can offer on-the-ground advice and support (as opposed to the in-the-ether kind you can always find here on this forum!)?

Whatever your decision, we'll do all we can to help.
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Ronson
Just another thought, when d was at her worst we had to have a quiet chat with the neighbours as she had such loud tantrums.  This was embarrassing but manageable for us as we have understanding neighbours; even simple things a like not knowing your neighbours could be a consideration.  

Also during the first few months my d had real difficulties maintaining friendships.  I had to step in a bit (almost organising play dates).  This kept d friendships going so she has a social network.  It would be so hard for your d to make new friends at this time; with initial refeeding comes such anger and depression.  It would be hard for her to function properly and may give a really untrue first impression 
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teecee
Welcome but sorry you find yourself here. I have to say I agree with Tina (as always!) my AN D is 17 having been diagnosed just after her 16th birthday. It’s been the hardest thing I’ve ever had to deal with in my life and up to being 47yrs Old I’ve dealt with the most horrible things people wouldn’t dream of in my work life. I used to need to take holidays as they were such a pleasure but having tried two (one to Portugal and one in the U.K.) we decided the stress wasn’t worth it and prefer to stay at home. 
Having a support system certainly helped us get through this horrendous time. I like Ronson had to speak to the neighbours as we called out emergency services a couple of times. I couldn’t imagine what it would be like in a foreign country having to navigate all we have over the past 17 months. 
Even now my D is in strong recovery and back in college (initially she couldn’t actually deal with the physical and mental exhaustion of school for a whole term) we are still delaying thoughts of a ‘holiday’ abroad until I am 100% confident that a relapse is a thing of the past permanently. 
For what it’s worth my advice is to delay the trip. Her health and well-being is the priority. The nice to do things in life get sidelined and life ends up completely different in the long term to what it is at the start of this journey. 
Its a marathon not a sprint. 
Take care whatever you decide. 
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Mamaroo
Welcome from me as well. Like Morpheus said to Neo in The Matrix: "Neo, sooner or later you’re going to realize, just as I did, that there’s a difference between knowing the path and walking the path." You can read all the books and articles and web resources about anorexia, but that 'theoretical' knowledge is a drop in the ocean of what you would need to know to get your d better. I also read a lot of books, but although helpful, means nothing unless followed through in practice. Even if you get good professional and medical support, getting her to recover is still going to be 99% on your shoulders and doing that in a foreign country (in my opinion) is just too hard. 

We went on holiday when we suspected something was wrong with my d, she wasn't eating dessert and exercising a lot and she lost some weight, but I told myself that during the holiday she would dig into the all-you-could-eat-buffet, but I was seriously wrong, AN came with us on holiday. We were gone for less than two weeks and she nearly stopped eating during that time. I couldn't wait until we were back home. Worst holiday ever, I still can't look at the holiday photos. The first time we went on holiday (same state) after that was 4 after WR and it was still touch and go. Only after a couple more months of brain healing was she in a much better place and we went on an overseas trip to visit family, which was a great success. 

So, my advice would be to postpone your sabbatical for a couple of years (since brain healing only starts to take place after 6-12 months after WR) and relapse in the first year after WR is very high. I know this is not what you want to hear, but tackling this illness hard now, would mean that you have your d back in a year's time. 

Good luck!
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her.
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caporegon
Many, many thanks for this outpouring of helpful (if sobering) advice. What a community! Due to this input and also some other conversations, I've already reworked some of the issues that I was thinking prevented us from postponing for a year, and that is what we're going to do. I'm profoundly grateful to you all for helping us get to that decision so quickly. It is clearly the right way to go.

So that is set aside for now, and our future interactions with the group will be more directly on the ED terrain.... 
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scaredmom
caporegon,
I think you made the right decision.  
All the best,
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Kali

Hi Caporegon,

Welcome to ATDT. I'm sorry you find yourself in this predicament. I can understand how exciting it is to take a sabbatical year and how you have been planning for it. And Norway is beautiful and interesting. I'm going to weigh in as someone who lived in Scandinavia for 8 years. I know you have decided to postpone the year away and think that is the right decision but just thought I'd throw these comments in.

1. Norway and all the Scandinavian countries have truly excellent health care systems. However as an American I am not sure how you would access the system or how payment would work. An eating disorder can be a costly medical condition and you would want to make sure you can get medical help for your daughter if she needs it.

2. It gets REALLY DARK REALLY EARLY in Scandinavia in the winter and the sun comes up late. And winter lasts for a really really long time. It can be rather depressing and cold. Like imagine that the sun comes up after 9 am in the morning and goes down before 3:30 in the afternoon. The rest of the time it is dark. And cold. And sometimes wet. And imagine that it is cold most of the year except for June, July and August. I am not sure how this might affect your daughter if she is struggling with an eating disorder. Has she shown signs of depression?

3. Although most people in Scandinavia speak excellent English there will be times when your family and daughter do not understand what people are saying (unless you have all studied Norwegian) and I'm not sure if this might make your daughter feel left out or lonely at a time when she is already vulnerable and ill.

warmly,

Kali

 

Food=Love
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tina72
caporegon wrote:
Many, many thanks for this outpouring of helpful (if sobering) advice. What a community! Due to this input and also some other conversations, I've already reworked some of the issues that I was thinking prevented us from postponing for a year, and that is what we're going to do. I'm profoundly grateful to you all for helping us get to that decision so quickly. It is clearly the right way to go.

So that is set aside for now, and our future interactions with the group will be more directly on the ED terrain.... 


This is indeed a great community here and we are looking forward to help you with all other decisions on your way!
These great parents here saved my ds life and my own sanity and I can honestly say I would not have got her where she is today without these great people here. So we welcome you in this community and we hope we can help you with the next steps soon.
It is not always what we want to hear what we get here but looking back it was always the right decision to follow the advices of those who are at the other side of the tunnel. Nobody understands better what you are going through then someone who has been in your shoes.
Keep feeding. There is light at the end of the tunnel.
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teecee
I also think you’ve made the right decision and been very brave in doing so. It’s so hard to understand the path you have to walk with this illness unless you’ve experienced it. 
I made things difficult for myself as I wrestled and tried to control what I now know was uncontrollable instead of rolling with the waves. Self care is something I forgot and I tried to carry on with my ‘old life’ and fight to keep hold of it. The new life I have is different but I’m genuinely grateful for it. It was a tough journey to get here....look after yourselves and do not allow the illness to ‘split’ you as a family. 
I think you will look back as I have done and be grateful that you made a decision to make the journey that bit easier for yourselves. Good luck and keep swimming 😊
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mimi321
Yes, health before everything, because without that...Just wanted to add that although our D got to a better state after six months, the work did not end there and as a carer I began to feel the effects of 6 months of intense care-taking. It was definitely worth it, but self-care and quiet was what I needed after, and calm waters. We look forward to helping you however we can with the next steps, this is a great forum, I wish I had taken advantage of it in the early days, as we may not have struggled as much as we did early on. Take care.
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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MargieMom
As caporegon's wife, I just wanted to chime in to say how incredibly grateful I am to all of you for taking the time to advise us.  While I am sad about the havoc e.d. is having on our lives (and could let myself get resentful about), honestly, with the decision to not go abroad, I can now take a huge sigh of relief (in a time when there is little relief) knowing we no longer have an unrealistic and unattainable time limit on our d's recovery process.  I love the "marathon not sprint" motto -- this is going to become my mantra.  I can tell this forum is going to be a lifesaver for us.  This is hard, hard work.  Thank you again, everyone.
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