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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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db
Hi,
Just found this forum and thought I'd reach out as I'm feeling hopeless, panicked, confused and anxious about everything right now, and don't know where else to turn.  Our 17 year old daughter (turning 18 this summer) was diagnosed with AN in February by our family doctor. Looks like her food restrictions started maybe last fall.  When we caught it, her BMI was 17. She has been skinny for a while since stretching into puberty, but 17 is obviously clinically low.  She insists that she doesn't want to lose more weight - just wants to stay around where she is (between 106 to 108 pounds, at 5 foot 6") as she likes how her stomach looks at this weight.  And she has maintained this weight - more or less - for the past two or three months.  When she goes above 108, she gets distraught and dark - and determined to get back down to that 'ideal' range.  She basically skips breakfast, has a small morning snack, light lunch (we assume, at school), but then eats a normal dinner.  She eats everything - breads, olive oil, Nutella, nuts, curry, pasta, you name it.  And she has a huge sweet tooth (loves candy).  But her only good meal is dinner and dessert.  Rest of the day she eats like a bird.  Gym was up to 5 times/week before we caught this - she's dialed it back to 3x/week but will run for 20-25 mins then do ab workouts for another 20 mins.  She's supposed to start college this fall.  We live overseas (Americans living in Europe), and there are scant ED resources for us in-country.  We have two therapists on board right now who are not ED specialists.  They are both American, but general therapists living in our European city.  We have a local nutritionist we found who apparently specializes in ED, but she has been prescribing head-scratching things (iron, even though our daughter is not iron-deficient, salt - not sure why).  At times, our daughter seems to have 'mild' AN, if that's a thing - but when we reached out to an ED therapist in the college town where our daughter is supposed to be this fall, she said a BMI of 17 was "alarming" and could qualify her for resident treatment centers.  Blood work came back normal, as did EKG, and she is menstruating.  That said, she completed a questionnaire for one therapist that reflected very high levels of anxiety, lack of confidence, dissatisfaction with body parts, etc.  And we have caught her lying about when/what she ate during the day and about going to the gym.  We've also noted some withdrawal from friends and social activities - not completely, but less than before. Questions for anyone patient enough to indulge me: 1) is 17.0 to 17.3 'alarmingly' low for BMI? Should we be looking at getting to the US quickly for intensive therapy? 2) are general therapists capable of bridging us until we get to the US/college town where there are several ED specialists available to intervene?  3) Is it 'normal' for an AN sufferer to eat everything but just not eat a lot?  4)  Should we be insisting on three square meals a day and three snacks (she's almost 18, so no longer a 'kid', which makes those kinds of rules tough to enforce, 5) is college even a good idea right now? she thinks the change of scenery will be helpful; we recognize the stresses of moving may be overwhelming and make this much worse, so a gap year is on the table. But there are therapists/dieticians/health unit there that can be engaged.  It's all a mess - partly because we're overseas, partly because we have no idea what we're supposed to do, and partly because of her age and stage in life right now.  Any advice or helpful experiences from others is greatly, greatly appreciated.  Thanks in advance.
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tina72
Hi to sweden and a very warm welcom from Germany!
I am glad that you found us although I am also sad that you need to be here. This forum is a lifesaver.
Before I answer your questions I want to give you some hope:
my d was diagnosed at age 17 two years ago. She was in ER and nearly dying because she refused to eat anything and even to drink water. She is now due to FBT and the great parents here in very good recovery, is maintaining her weight for more than 1,5 years now, is a happy 19 year old woman and off to university now. Recovery from ED is possible, most important is to get good information and help how to do it and you found both here. We can help you, you are not alone, the parents here are great and there is always someone available 24/7.
Keep feeding. There is light at the end of the tunnel.
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sk8r31
Welcome to the forum db, though sorry you have a need to be here.  Glad you have found us, and hopefully the evidence-based information and peer support will be helpful.
To answer your first question...yes, a BMI of 17 can be fairly alarming.  For context, my d never went below a BMI of 19, yet hospitalization for medical stabilization was necessary.  It is an individual thing, and also depends on the rapidity of weight loss, among other things.  
And secondly, college is for those who are in robust good health.  The transition from home to school at this stage is a stressful period, and someone not in strong recovery really shouldn't be going.  I know that as parents we are supposed to 'let our kids fly' at this stage of life, but when in the grip of a life-threatening illness, it is just not possible.  School can wait; health cannot.
If I were in your shoes, I'd be heading back to the states, and finding the best possible evidence-based care asap.  A gap year to regain health is a terrific idea.  Look into the 5 Day programs at UCSD, UCSF, or the Center for Balanced Living in Ohio.  They all have very good track records, and may be a good fit for your d and your family. We went to the 5 Day program at UCSD with our then-17-year-old, and it was a game-changer.  She was able to go to a competitive school out-of-state (with a strong safety net) a year later.
Sending warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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tina72
db wrote:
Hi,
Just found this forum and thought I'd reach out as I'm feeling hopeless, panicked, confused and anxious about everything right now, and don't know where else to turn.  Our 17 year old daughter (turning 18 this summer) was diagnosed with AN in February by our family doctor. Looks like her food restrictions started maybe last fall.  When we caught it, her BMI was 17. She has been skinny for a while since stretching into puberty, but 17 is obviously clinically low.  She insists that she doesn't want to lose more weight - just wants to stay around where she is (between 106 to 108 pounds, at 5 foot 6") as she likes how her stomach looks at this weight.  And she has maintained this weight - more or less - for the past two or three months.  When she goes above 108, she gets distraught and dark - and determined to get back down to that 'ideal' range.  She basically skips breakfast, has a small morning snack, light lunch (we assume, at school), but then eats a normal dinner.  She eats everything - breads, olive oil, Nutella, nuts, curry, pasta, you name it.  And she has a huge sweet tooth (loves candy).  But her only good meal is dinner and dessert.  Rest of the day she eats like a bird. 


She needs to eat 3 meals and 2-3 snacks and YOU need to take over and serve all meals and snacks. YES, she is 17, but she cannot see how sick she is and she cannot make good food decisionsso you must help her with that until she is able to do that again.

Gym was up to 5 times/week before we caught this - she's dialed it back to 3x/week but will run for 20-25 mins then do ab workouts for another 20 mins.

No gym. You do not need an exercise compulsion in addition. She is to sick to lose precious energy at the gym at the moment.

db wrote:
She's supposed to start college this fall.  We live overseas (Americans living in Europe), and there are scant ED resources for us in-country.  We have two therapists on board right now who are not ED specialists.


She will need to have a gap year or at least start at a college that is near home and she can have half schedule and still eat at home. No college when she is not in a really healthy state or you will see a relapse soon. Normally we say here they should at least be weight restored and eating everything for 6 months. Better 12 months. Recovery from ED is a marathon, not a sprint.

db wrote:
At times, our daughter seems to have 'mild' AN, if that's a thing - but when we reached out to an ED therapist in the college town where our daughter is supposed to be this fall, she said a BMI of 17 was "alarming" and could qualify her for resident treatment centers.


This therapist is a good one, you cannot have a light version of ED, as you cannot be a bit pregnant. All signs you describe are alarming and the earlier you catch it the better is the outcome. She may not need to go IP, you can also help her at home, but she needs to get back to regular full size meals without any restriction (no low fat, low carb, low sugar, vegetarien or vegan) asap.

db wrote:
Blood work came back normal, as did EKG, and she is menstruating.  That said, she completed a questionnaire for one therapist that reflected very high levels of anxiety, lack of confidence, dissatisfaction with body parts, etc.  And we have caught her lying about when/what she ate during the day and about going to the gym.  We've also noted some withdrawal from friends and social activities - not completely, but less than before.


Blood work can be normal although they are nearly dying (seen here). Periods is a sign when its off but many patients do never lose periods although they are severly sick. All you describe would make all alarm bells ring of a mother who has experiences with an ED.

db wrote:
Questions for anyone patient enough to indulge me: 1) is 17.0 to 17.3 'alarmingly' low for BMI? Should we be looking at getting to the US quickly for intensive therapy? 2) are general therapists capable of bridging us until we get to the US/college town where there are several ED specialists available to intervene?  3) Is it 'normal' for an AN sufferer to eat everything but just not eat a lot?  4)  Should we be insisting on three square meals a day and three snacks (she's almost 18, so no longer a 'kid', which makes those kinds of rules tough to enforce, 5) is college even a good idea right now? she thinks the change of scenery will be helpful; we recognize the stresses of moving may be overwhelming and make this much worse, so a gap year is on the table. But there are therapists/dieticians/health unit there that can be engaged.  It's all a mess - partly because we're overseas, partly because we have no idea what we're supposed to do, and partly because of her age and stage in life right now.  Any advice or helpful experiences from others is greatly, greatly appreciated.  Thanks in advance.


1) YES. The way down the rabbit hole can be fast. She can be at 17 today and at 15 next week.
2) Best evidence based therapy is doing FBT at home. You do not need to go back to the states I think. There is an australian therapist living in Aarhus/Denmark that does FBT and Skype sessions. You find her with "searching treatment" on maudsley parents org. I will send you her homepage later.
3) Everything and nothing is normal with AN. You see all varieties with this disease.
4) YES. NO matter if she is 14 or 34. It is needed. The faster you start before she is 18 and can refuse treatment the better. She can be in a better state in summer and then she will see why this was needed. She cannot make good food decisions at the moment as her brain does not function well. The old rabbits here told me to get my d weight restorated asap before she gets 18 and can refuse treatment and I listened to them and brain recovery started about 2 months before her 18th birthday and she was totally compliant about everything at that point. Best advice ever.
5) NO (see above). College only with weight restoration, eating everything and a contract in very good recovery.

Sorry for being so short but it is coffee time here now and I will be back later 🙂.
Keep feeding. There is light at the end of the tunnel.
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db
Thank you, tina. If you could send me that site for the FBT person in Denmark, that would be great. I appreciate your response. db
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db
sk8r31 wrote:
Welcome to the forum db, though sorry you have a need to be here.  Glad you have found us, and hopefully the evidence-based information and peer support will be helpful.
To answer your first question...yes, a BMI of 17 can be fairly alarming.  For context, my d never went below a BMI of 19, yet hospitalization for medical stabilization was necessary.  It is an individual thing, and also depends on the rapidity of weight loss, among other things.  
And secondly, college is for those who are in robust good health.  The transition from home to school at this stage is a stressful period, and someone not in strong recovery really shouldn't be going.  I know that as parents we are supposed to 'let our kids fly' at this stage of life, but when in the grip of a life-threatening illness, it is just not possible.  School can wait; health cannot.
If I were in your shoes, I'd be heading back to the states, and finding the best possible evidence-based care asap.  A gap year to regain health is a terrific idea.  Look into the 5 Day programs at UCSD, UCSF, or the Center for Balanced Living in Ohio.  They all have very good track records, and may be a good fit for your d and your family. We went to the 5 Day program at UCSD with our then-17-year-old, and it was a game-changer.  She was able to go to a competitive school out-of-state (with a strong safety net) a year later.
Sending warm support,
sk8r31
   

Thank you for this.  We will look into the 5-day programs you referenced above.  Really glad to hear that the UCSD one worked well for your d.  Much appreciated.
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tina72
The 5 day family program at UC San Diego or UC San Francisco is a really good idea to get started. If you can afford that, go there and then you will be prepared to do FBT at home. If you need to wait for that get started tomorrow (I mean as fast as possible) on your own because you should not lose more precious time.

These people offer skype FBT support in central Europe:
Kelly Pacheco, Aarhus https://www.talkingworks.dk/
Eva Musby, GB https://anorexiafamily.com/

Eva Musbys book is the "bible" to get started with refeeding. She also has great videos on Youtube.
Another really important book to understand what ED does in your ds brain and why she cannot make good decisions for herself at the moment is Carrie Arnolds book "Decoding Anorexia". Carrie is a former patient and now a biochemist and she describes all the changes in the brain very good.

You do not really need a special ED team if there is none available. What you need is a GP or pediatrician to have her health monitored and for the weighings (best is to do blind weighings and let her not know her weight at all). Some had help from a dietitian to know what to feed them but to be honest you can learn that here too. Your d may not need any dietitian and no special psychological therapy at the moment because AN is a brain metabolism disease and the most important medicin and therapy is regular well nurished food.
http://maudsleyparents.org/workingwithanonmaudsleyteam.html

I understand that you have problems to get the idea of taking over with food and do all that is needed to be done now because your d is nearly adult. I understand that because mine was same age when we started. It helped me to compare AN to cancer. AN is the most serious illness in young people - more kids die from AN than from cancer. So it helped me to think about it like my d had cancer: if she needed chemotherapy, I would not have thought "oh, she is nearly 18, she must decide herself wether she wants chemotherapy or not". I would have done ANYTHING NEEDED to make her get that chemotherapy. Same here. We need to do strange things to fight this strange illness. But the outcome is important. The goal is to get our kids back to a healthy weight and to enjoy eating. And FBT is the way to get them back to that. It is gold standard in many countries in the world and best evidence based therapy available. And it is prooved that it works even with young adults from 17-25.
Keep feeding. There is light at the end of the tunnel.
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db
Thank you.  We have looked into FBT but incredibly there are no certified FBT therapists or resources in Stockholm.  I'm getting the clear sense that we need to treat this with great urgency.   We will look into all of the resources you have suggested and act quickly.  The UCSD or UCSF programs sound like they are highly recommended by many.  Thank you, again.
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tina72
FBT is not very popular in Europe (except GB), I cannot tell you why but I work very hard to change that at the moment (at least in Germany). But you can learn the most things you need to learn here and in books. You can even buy the FBT treatment manual and hand it out to the team that is available for you. Most important thing for you is to get started asap, to find your big girl pants and have the courage to do that and to find a team that supports you and does not tell you old fashioned treatment ideas like "your d needs to want to recover" or "your d must decide herself what and how much she wants to eat" or "it is all about control in dysfunctional families" or "there must be underlying issues for that behaviour".

It is called family based treatment because most work is done in the families...🙂

I know that the crown pricess of Sweden had Anorexia some years ago. She was living in Stockholm then I think. Can you maybe find out who helped her?
Keep feeding. There is light at the end of the tunnel.
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sk8r31
Hi db...hearing you say that you are in Stockholm, one of the most respected ED researchers in the U.S. also spends half her time at the Karolinska Institute in Stockholm.  She is Dr. Cynthia Bulik, and she is on F.E.A.S.T.'s Advisory Panel.  Her contact info is listed there.  She is incredibly supportive of parents and FBT, and recently gave a presentation on her current research at our F.E.A.S.T. of Knowledge Day in NYC on Mar. 17th this year.  I would reach out to her to see if she might be able to point you in the direction of possible clinicians in Stockholm who are up-to-date with current evidence-based practices.
As an aside, our family was in Stockholm on sabbatical many years ago, and we loved it.  That said, being abroad with an ill child is extremely stressful.
Wishing you all the best,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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db
Wow - fantastic to know about Dr. Bulik! Thanks. I will look into contacting her to see what she recommends in Stockholm. Karolinska is an impressive facility; she must be good. It’s just such bad timing with our d only having two or three months left here before we are supposed to be heading toward college. We really need to unscramble now the timing would work for all of this. How long does FBT usually take/last? (I know there are no definite answers to that question, but is it possible at all to make a generalization? Months? Years?). After the 5-day intensive programs, what next? Could we do the UCSD program for 5 days next month then continue the program with video therapy from Stockholm and over the summer? So many questions. Thanks to everyone on here for weighing-in. We are so very grateful.
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sk8r31
Best to contact the intake specialists at UCSD and/or UCSF to see first whether the 5 Day program is a good fit for your family.  It's possible that with compromised health your d may need PHP or IOP instead.  I can tell you our experience, which was that our d was 'borderline' in terms of health when we went to UCSD.  In other words, her medical workup meant that medical stabilization could possibly have been necessary prior to attending.  However, we were able to go and never looked back.  We left with a contract in place, and d was able to gain weight through the following 10 weeks (it was summer) to reach what we had determined was a minimum range of weight restoration for considering university a year later.  She/we continued with FBT throughout most of the year in our regional area...beginning with 2x/week sessions and gradually lengthening to 1x/month.   The summer before she started at university, we worked on skills and strategies for eating in dining halls, dealing with disordered eating of students around her (there is LOTS of that at uni), and other social situations.
So, it was a solid year of recovery before our d went away for university, and we had a very strong safety net in place.  Hope that gives you a sense of time that might be involved to get your d into a strong place of recovery.  General rule of thumb...don't consider university until 6-12 months after nutritional rehabilitation. 
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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db
Extremely helpful. Thank you. Good point about disordered eating abounding at universities. Another consideration to take into account and prepare for. Glad to hear about your daughter’s timeline. I can only hope that we would see results that quickly.
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debra18
You may think it's bad timing but it's good you caught it before she went to university. She could have gone off to university and really been in danger.
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db
Yes - good point. Thanks for putting it in perspective.
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Kali

Dear DB,

You have gotten some excellent advice here but I wanted to add a few things. First, there has been a parent, Pettelly, who is from Denmark and is very kind. I believe her daughter was treated near or in Copenhagen. I believe her daughter is doing well. Perhaps if you email her (look up her profile) she can point you to some resources in Scandinavia.

I also wanted to say that my daughter was also diagnosed at 17 and is now 21. She went through very intensive treatment and then I prepared every meal for her that I could for a long while after and she is doing better after a long struggle. She did take a gap year to be in treatment after we sent her off and had to bring her home again because she didn't eat enough.

The first thing is that your daughter needs to be eating more and stopping the exercise. Even though she is 17 you can prepare her food and sit with her to make sure it is eaten. Here are some answers to your questions:

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1) is 17.0 to 17.3 'alarmingly' low for BMI?

yes

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Should we be looking at getting to the US quickly for intensive therapy?

It depends on whether you can get her to eat more and whether you can find resources in Stockholm. Sweden has an excellent health care system.

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2) are general therapists capable of bridging us until we get to the US/college town where there are several ED specialists available to intervene? 

When you say we, does that mean you are going to be living in the college town with your daughter? I would advise against sending her to college thinking that ED specialists can help her without her having family support and meal support in her living situation.

3) Is it 'normal' for an AN sufferer to eat everything but just not eat a lot? 
It can be that your daughter has just been eating in front of you but not eating elsewhere or eating very little elsewhere. That is what my daughter did for a long time. I later found out that dinner was her only meal.

4)  Should we be insisting on three square meals a day and three snacks (she's almost 18, so no longer a 'kid', which makes those kinds of rules tough to enforce,
YES YES and YES. I sat and ate with my daughter until she was 19 and ready to go to college. You can start refeeding today. You don't have to wait until a professional tells you to do that.

5) is college even a good idea right now? she thinks the change of scenery will be helpful; we recognize the stresses of moving may be overwhelming and make this much worse, so a gap year is on the table. 

College is best when a person is well. It can be very stressful and the classes can be challenging. 
If your daughter has already been accepted to college, and she is not well enough to go, the college will allow a student to defer and she can go when she is feeling better.

Perhaps you could reach out to the eating disorder center in Stockholm and inquire about options for treatment there as well:

http://slso.sll.se/en/our-healthcare-services/stockholms-centrum-for-atstorningar/

Hoping for the best for your daughter. Please feel free to reach out and ask any questions you might have.

warmly,

Kali

Food=Love
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scaredmom

hi db,
I am glad you found the forum. You have been given great advice above.
I just wish to ask if she gets medical assessments regularly. Those would need to include Blood pressure lying and standing as well as heart rate while lying then standing too. This is called postural blood pressure/vitals. 

If there is a drop in systolic by 20 (top number) and an increase in heart rate in compensation. Or an overall low heart rate. (less than 60) she may be in physical danger and urgent hospitalization may be needed.
I would suggest the medical assessment be done weekly by your GP. Here are some guidelines for your GP to look over. It may help to determine  if your d requires admission.

http://cedd.org.au/wordpress/wp-content/uploads/2014/09/Guidelines-for-the-admission-of-children-and-young-people-with-an-eating-disorder.pdf

https://metronorth.health.qld.gov.au/rbwh/wp-content/uploads/sites/2/2017/07/guide-to-admission-and-inpatient-treatment-eating-disorder.pdf

We had to stop exercise completely. My d was much younger though, I can appreciate how hard it is for a young adult. 
I agree with everyone that said  that college can wait- she is too ill right now. 
Also unless you see it go in and stay in,(food that is) it may not have. Sorry but it is just what many of us seen. (My hand is waving at you as being fooled that she was eating when she was not)
Is she in school and can you give her 100% supervision of eating? I know it is not easy but it may help her.
What are you struggling with now? what is she eating and we can help to increase the calories.

But as I mentioned before, please make sure she is medically stable. ECG may be normal but if there is a slow heart rate, that is concerning.

Please know that we understand how yucky it is right now. Please ask all the questions you have, we really wish to help.
Thinking of you.
XXX


When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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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ingrid

Hi DB, sorry to hear about your daughter. You have found the best place for support and questions in this forum. I live in Stockholm and have a daughter who is 17 (very soon 18) and who unfortunately is going through a relapse at the moment. She was very ill with AN from ages 14-16, WR and in a good state for two years but relapsing at Christmas and now struggling her way back with our help. I just wanted to make some suggestions for help in Stockholm, the ED-care here is actually very good compared to many places I have read about on this forum, although the waiting time is horrible. Have you been in contact with SCÄ (Stockholm center for eating disorders)? They offer FBT, Multi family therapy, meal-support in the home for the first weeks of FBT, IP – where the whole family is admitted to help and support the parents as well as the child and day care where the patient comes every third week and does not have to quit school. They work closely with Karolinska Institutet for research. They answer questions via phone every weekday between 11-12 (08-12344100). I would also warmly recommend “Frisk och Fri” a support and advocate organization for sufferers and family members: https://www.friskfri.se/ they offer phone support, mentors and open support groups for parents, siblings and sufferers. I hope you find the help you need for you and your daughter

Best regards Eva

 

 

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tina72
db wrote:
It’s just such bad timing with our d only having two or three months left here before we are supposed to be heading toward college. We really need to unscramble now the timing would work for all of this. How long does FBT usually take/last? After the 5-day intensive programs, what next? Could we do the UCSD program for 5 days next month then continue the program with video therapy from Stockholm and over the summer?


It is a good thing that you caught it early before she went to college and to be honest 2-3 months until then is not enough for recovery and a gap year would be the best idea. If you work hard you can get her into a healthy state in this year and she can start college next year in a much better state. So forget college for this year.

How long does FBT take? Forget all time lines that are given in the manuals. It depends on so many things. First on how much weight your d needs to gain and how long it takes to get her to eat what you serve. Then on how many food items she restricts (we call that fear food here) and how long it takes to work that list down (you need to re-introduce all fear food and she needs to get used to eat it again - some parents rip the band aid off and serve them all at once again, we introduced one a week and it took us nearly a year to work all the fear food list down). She must learn to eat in restaurants and cafeterias again. She must learn what a good meal and snack is again. She must learn what a good portions size is again. And and and...
To give you an example, my d was diagnosed in 01/2017. IP until 03/2017. WR in 07-08/2017. Brain recovery started slowly at 10/2017. She graduated from school in 06/2018 and started university in 10/2018 (but only half schedule and still living at home - she would still not be able to move out at the moment). She still needs help with meals now and then. She can eat in the cafeteria 3-4 times a week but needs to eat at home the rest of the week to get the right amounts of food. I still plate lunch (biggest meal here) at home. She is about 90% recovered but still not out of the woods. She still needs supervision and needs to stick to the contract in year 3 of recovery. So it is a really long way to go.

What would happen after the 5 day programs? You will learn what is important to know and how to refeed her there and then you will go home and practise what you have learned and help yourself with help of skype-therapists and this forum here. You will need to do 95% of the work yourself at home. That is hard but that is why FBT is so successful. You will learn how to do it and what works for your family and what not and you will get all the power that is needed to fight that disease out of the house. You will see small and bigger struggles on her way to recovery and you will know what to do and get it early. That is the best relapse prevention that is possible. The first year is the hardest, then it is "only" keeping them on track and watch them like a hawk 🙂. In year 3 our life is completely normal now compared with 2 years ago but she is still not 100 % recovered. If she would skip a meal or a snack is delayed we would see ED walking into the house again very soon...
Keep feeding. There is light at the end of the tunnel.
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Stephanie144
Dear db,

Sorry to hear of your situation.

The BMI is an indicator and my daughter's BMI, she is 26, is now hovering around 12 and still they do not want to admit her. Yet, I've also read of people who have been admitted at higher BMI than my daughter. And I'm in the UK.

With hindsight it was all rather hidden when my daughter was the age your daughter is, and I can now see that the stress of university, and even before that the two years to gain the qualifications required for university contributed to the overall anxiety. This is not a time to be away from home I feel, and I wish I had known.

With that said though would she have agreed to stay home rather than go to university. Somehow I doubt that.

But you are away from your home country and so that presents an additional stress for all of you.

My daughter's dad is from Sweden, Stockholm, and I have lived there and visited many times. It is a very different culture and outlook from the UK and I should imagine even more so from the US.

The Karolinska Institute in Uppsala is highly respected outside of Sweden too. 

Swedish people and their institutions in my experience are not given to emotional displays, everything is very logical, very rational. It can seem as if they don't care or are taking time. Again in my experience Swedish people can be quite hard to get to know, and it may be you and your husband are part of a US community there and perhaps it might seem that there is not much resource in Sweden. And I can't say for eating disorders but there are many medical 'areas' that Sweden has been pioneering in.

So maybe investigate further if you can.


From being in the UK I can tell you it is not 
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db
Thanks to all of you my wife and I have reached out to UCSD and UCSF to inquire about their programs.  Are there thoughts on which may be "better" or are they both more or less equal?  Anyone have experience with the Maudsley intensive family treatment program in London?  Thoughts on 'cultural challenges' of an American family going through the program in the UK with British families (sometimes it's the little things that matter when it comes to communication).  Lastly, we keep reading about other forms of therapy, especially for older teens (ours will be 18 this summer): CBT, Individual Based Therapy, DBT, etc.  Are they as effective as FBT for older kids given level of independence at that age (esp. with re-feeding)?  Many of you have pointed out that Sweden has good AN and ED programs and clinics.  It's true - but since we aren't citizens we don't have access to the public healthcare system, and private practices are few and far between.  The one renowned center here that we checked with had a 4-6 months wait list.  Thanks again to all of you - immensely.  Still panicked and confused, but at least starting to dig through all of this to find a possible way forward. 
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scaredmom
The UCSD and SF programs will be similar as were cofounded  by some of the same people.
I think if you get  into any one of those soon, take it! 
All the best! 
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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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Foodsupport_AUS
I agree with a choice either UCSD or UCSF would work. Given you are originally from the US this would be a good step forward. The goal of this program is to empower you as parents to help you and your daughter move forward. It is common for many parents to think that their older teen should not be treated by FBT "because they are nearly independent". All of the evidence so far suggests that this may be exactly what is needed and their are a number of families where FBT has worked brilliantly as a 17 year old. The other treatment that has some evidence with it is AFT (adolescent focused therapy) . Its long term success seems to be similar but FBT seems to get weight restoration much sooner and apparent recovery sooner in most papers. CBT-E has some evidence for adults. 

Some of the parents have elsewhere discussed the Maudsley intensive family program. It is also a skills based program but I don't think there has ever been a comparison between the programs. I am struggling to find the threads but will give you a link if I find them. 
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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blondie
Stephanie144 - that's dreadful - what justification/reasoning have they given for your daughter not being admitted somewhere as an inpatient?
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tina72
db wrote:
  Lastly, we keep reading about other forms of therapy, especially for older teens (ours will be 18 this summer): CBT, Individual Based Therapy, DBT, etc.  Are they as effective as FBT for older kids given level of independence at that age (esp. with re-feeding)?  


CBT, Individual therapy and DBT are not that effective as FBT as they normally work only with the patient and they require that the patient wants to get better (which AN patients often cannot do because of anosognosia - they cannot see that they are sick at all) and they mostly want the patient to decide what to eat or give no help with refeeding and that is most important part in recovery.
These therapies are sometimes helpful in stage 3 when recovery has started but many patients do not need any therapy once they are weight restored because most symptoms of AN were only due to malnutrition of the brain.
If you decide to do FBT a therapy that does not support you with taking over with refeeding because they think your d is nearly adult and must decide herself what she wants to eat can damage all your effords with refeeding so please be careful with that and talk to all therapists alone before you see them with your d.
Refeeding is most important. FBT is evidence prooved and also great with young adults 17-25. It is called FBT-tay then.
https://anorexiafamily.com/family-based-treatment-young-adult/
https://cfe.keltyeatingdisorders.ca/news/caring-transition-age-youth-using-new-form-family-based-therapy-young-age-group
http://www.lisageraud.com/FBTFBTTAYforEatingDisorders.en.html
Keep feeding. There is light at the end of the tunnel.
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