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

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nancytaps
  1. my daughter has had AN for almost 5 years now. She was diagnosed when she was 11 and is now almost 16.  She was a competitive swimmer Up until September of 2018.  We have a team at the hospital near us in Hamilton, Ontario, Canada. They use the FBT method, which I am finding now is not working.  Our daughter would cooperate with us and eat but until last summer when the onus was put more on her, she started to cut out sugar and her weight plummeted and she ended up in the hospital for the first time in September.  No more swimming.  When she was discharged from the hospital after 2 1/2 weeks, she quickly started hiding food from us until I found it.  At that point it had been 3 moths of weight reduction and I took her to Emergency on the 23rd of December.  She was admitted again.  She was discharged on the 11th of this month (January) and in the first week I saw her hiding food up her sleeves and in napkins etc.  We caught her, and explained that this cannot keep happening.  Since then, in the last week, she has decided that she is not following our rules to a T anymore.  She refuses sweets and treats, and leaves parts of her sandwiches and cheese etc that she decided she isn’t eating. I will offer meal replacement as we have done in the past, but to no avail.  She will eat more of something else instead, such as extra meat, or more fruit etc.  I feel like a hostage!  What should I do?  Please give me advice!  Anything!!
Nancy 
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Foodsupport_AUS
Welcome to the forum, sorry that you have had to find your way here. Five years is already well into this illness. I am not clear from your post what methods you have been using prior to FBT nor how well your daughter was up till September last year when she was competitive swimming. Sports can be a huge risk factor for relapse and most would recommend not doing competitive sports until well into recovery. 

When you say FBT is not working do you mean you are having trouble taking charge of re-feeding because she is resisting? That  is normal and expected. Our job as parents with FBT is to not give their ED the option not to eat.

The general recommendation for FBT is to use it in the first three years of illness as after that time it is much more entrenched and it is thought that it is less effective. Unfortunately there is no other truly effective method either. 
If you haven't already please read our FEAST family guides which give some good up to date information about eating disorders.  https://www.feast-ed.org/family-guide-series/
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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scaredmom
Hi nancytaps,
I am sorry that D is not doing well. I do think that you need to plug the holes and stop her from hiding food. Many have had to have rules for ED ie no sleeves at the table, no pockets, no napkins, no dogs to eat the dropped food, no hoodies to hide the food. etc...
I know you have tried to explain this to her but she is still quite ill and cannot do what you ask, as it is ED that is making her do this. Many have to watch their child in the washroom to0 and no toilet for one hour after the meals to ensure no throwing up etc..
I kept the home routine the same as the hospital. Are you able to do that?
I agree with Foodsupport_AUS about this being typical ie her resistance. You will likely need to regroup and feed her and ensure there are no loopholes not to eat. How is your team supporting you? The Hamilton people are good and would likely have advice on how to handle certain behaviours too, so please let them know what is going on at home. 

Is she still in school? Do you have a plan if she does not eat, do you take her to the hospital, NG feeds etc... 
Also are there incentives ie school, friends, cell phone that she can "have" after eating her meals.
I know you are "offering" meals supplements, how can we help you to get them in and stay in? What exactly happens at meal times?
Also, I am in Ontario and the Hamilton program is very good. My D was admitted there at diagnosis and now we see our local ED clinic. 
Are there co-morbids (ex depression) that may need support too? 
And I too, wish to know, what have you done so far in the past? Maybe there is something you did before that could work now? Please ask all the questions you have. 

Please note this is a public forum and you may wish to use a pseudonym only and not your full name.
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
Hi nancytaps,

a very warm welcome from Germany and sorry that you have to be here. I am also without words that your team in hospital allowed her to stay a competetive swimmer for so many years although she was not recovered from ED. Sports are a huge trigger for ED and often cause relapses and they should have known that.

So at the moment she is doing no sports?
Is she in school? Are meals supervised there?
What did you already try to do against the food hiding? Many parents here ask their kids to stay with them after meals at least for an hour. If food is hidden in clothes or sleeves it is a good idea to ask them to wear shirts without sleeves for meals (or if needed a bathsuit). It sounds crazy but you must try to do everything that is needed to make sure the food goes in. My d feared wearing a bathsuit more than eating...
What are you doing for consequence if she leaves food or refuses to eat things?

Has she ever been truely weight restorated in these 5 years? Was she ever at a healthy weight and free of ED behaviour? Does she have fear food left? Give us some more information please so we can help you better.

If you like to delete your name in the post click on the red arrow on the right side and there is a pencil. If you then click on the pencil you can edit your post and delete your name. Last thing you need at the moment is seeing your d reading what we write here.
Keep feeding. There is light at the end of the tunnel.
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nancytaps
Thank you all for your prompt responses to my post.  To give further detail:  My daughter kept swimming with the ED for a year and a half.  At which time, the outpatient team at the Hospital determined that she was "better" and discharged her from therapy.  She continued to see the pediatrician of the same team for a year and a half while her weight and height grew in accordance with each other and it appeared that she was not having any difficulty.  In hindsight, I don't know whether she was really over it, or if it was that she was just good at hiding it.  Regardless, after a year and a half of not seeing a therapist, my daughter tried cutting and that brought us back to the therapist again.  It has been almost another year and a half since "relapse".  Even after the relapse happened there was never a time in which the Doctors were telling us that she should not swim.. They would say "it can be done with treatment, but it will just be more difficult".  Call it stupidity on our part - If we had to do it over again, we would have taken her out from the very start - the guilt will be with us forever.  It really went downhill this past summer of 2018 when the therapist was telling me to back off and to try to let my daughter take more control over her eating.  (By the way, as long as she was swimming, she would eat.  She was even able to go to training camp without us for 2 weeks each March and swim 3 hours a day and come back having GAINED weight! The swimming was keeping the ED happy and quiet).  Anyway, by the end of the summer, my daughter was experiencing dizziness one evening.  Luckily, she had an appointment scheduled with her therapist the next day, as when we went to the appointment, they took her vitals and admitted her (low heart rate).  She had been trying to give up all sugar over the course of the summer...  That brings us to the first admission and finally our first appointment with the psychiatrist on the team.  The psychiatrist diagnosed her with Generalized Anxiety Disorder and suggested she start Zoloft.  My husband and I had to think about the medication as we were not prepared to hear such a diagnosis.  The psychiatrist also said "no more swimming".  This was like a death sentence for my daughter (i know, some wouldn't have any sympathy as this is just a sport, but it was her life - she had friends, was well-liked and admired etc etc).  She was discharged from the hospital after 2 1/2 weeks.  Again, in hindsight, we didn't know what we were in for.  Taking swimming away was like forcing us to start back where we were 4 years ago.  She dug her heels in HUGE.  After six weeks of watching her weight go down and me being so naive as to why we started Zoloft.  Six weeks later and 14 pounds lighter, I found food in her crawl space that she had been sneaking away (at this time, she was still going to school and eating lunches and snacks on her own - or so I thought)  I was not prepared for her to start doing this.  I wish I had had the heads-up warning.  On top of all of this, our daughters thoughts of suicide “suicidal ideation” had slowly been increasing.  This was terrifying for us as parents.  We had never heard her utter those words before.  We didn’t know whether this was the ED talking or the Zoloft.  It kept getting increasingly worse and we were really scared.   On December 23rd, with divine intervention, we managed to get my daughter to the ER and after 10 hours and many Doctors later, I insisted that she be admitted. (the ER Dr. eventually called the pediatric eating disorders specialist that was on call and they confirmed)  She was discharged on the 11th of this month (January) only because there were bed pressures. The psychiatrist weaned her off of Zoloft, and now on to Cetalopram or “Celexa”.  Since her discharge, she has not gained any weight.  We have caught her putting food down her bra and down her pants.  Since being caught again, she is refusing to eat everything we put in from of her.  Believe me when I tell you, that we have tried everything to get her to eat.  We can't physically force her or restrain her.  When a 15-year-old girl decides that she isn't going to do something, its pretty hard to convince otherwise.  All privileges have been revoked. No phone anymore (especially since we discovered that she was going on to Pro-Ana websites), and she doesn't want to go out with friends anyway.  It just seems to be at a standstill.  We have another appointment tomorrow with the therapist (weekly visits with her right now - and seems to be the maximum we are allowed).  She has had her exams exempted and is just finishing up her assignments for now.  As of today, she will have one week off of school (torture for both herself and me).  (By the way, since she was last discharged, I have been picking her up from school to eat lunch at home).  I am doing everything I can think of to keep the upper hand.
If anyone can relate and give me any advice, that would be greatly appreciated.
Nancy 
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scaredmom

Hi nancytaps,
Many here can relate and big time. 

So at this time, closing loopholes with be a priority. Getting rid of the apps on phone, taking away phone etc.. no more exercise. ( I had to take gym away too) adding more calories to the food she does eat. Having consequences for not eating. Ie no school until you eat., Following her around with the food until she eats, repeated ER visits etc....
Some have had to "pat down" their child after all meals to ensure they were not hiding food. It is to keep her safe and not because you don't trust her. I think deenl did it that way. It is ED you do not trust. You still have authority over her. She is dependent on you for her food, money, life, really.
I would recommend that you watch every morsel of food going down to ensure it stays down and she does not eat in "private" where she may dump. 
So now to get the calories up, have you added oils, cream, butter cheese to everything you cook for her? A high cal smoothie (oil, cream, juice fruits, ice cream (Hagen Dazs or Ben and Jerrys 540 cal per cup the rest are only 150-200 cal per up). 
The weight going up and finding all the other "ED tricks" she is doing and getting control of those starts the process of refeeding. 
I understand how difficult it is for you being home and feeding. It really sucks. And there is way through... food and weight gain. Now you know what has happened. It is not a failure on your part, it is feedback. It was too soon to hand back any control to her.- I have seen that here so many times over and over again.  And some have found their children cannot return to their sport, ever. Sorry, but that may be a big trigger for her ED. Yes for many, their sport is their life... so now we need to show them a well-rounded life that may not contain their sport. Hard as that is. Health is the priority here. 

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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sk8r31
Welcome nancytaps, though sorry you have a need to be here.  Scaredmom has offered you some good suggestions....and this is most definitely hard, hard work.  We all get that.
I also had a d who was a competitive athlete, and for whom taking that sport away involved grief.  At first, we tried to use that beloved sport as motivation, but it was simply too difficult to maintain the energy required to be active, even if she was eating more.  The caloric requirements for growth through puberty, coupled with what was necessary for nutritional rehabilitation were enormous.  Exercise was finally cut out completely. 
We did need to have the kickstart of the multi-family 5 Day Intensive program at UCSD, and learning how to use a contract effectively, to be successful with our d.  She had been ill for 3 years before we were able to get to that point, and tap into good peer support and good evidence-based resources.  No magic wand....and we needed continued FBT for a year afterward that involved travel 90 min each way...BUT, we were successful in getting our d into strong recovery.

Sending you warm support, as you navigate next steps.
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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debra18
Did you look at Eva Musby's website? She has a book and videos that are very helpful. She also does coaching over Skype that might help you
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tina72
nancytaps wrote:
Regardless, after a year and a half of not seeing a therapist, M***** tried cutting and that brought us back to the therapist again.  It has been almost another year and a half since "relapse".  


Think about removing or changing the name. This is a public forum. You can do that with the edit pencil on the right when you click on the red arrow there.

nancytaps wrote:
Even after the relapse happened there was never a time in which the Doctors were telling us that she should not swim.. They would say "it can be done with treatment, but it will just be more difficult".  Call it stupidity on our part - If we had to do it over again, we would have taken her out from the very start - the guilt will be with us forever.  


No need to feel guilty for YOU. You have just listened to the professionals. It is there fault, not yours. Sad enough that it happened.

nancytaps wrote:
It really went downhill this past summer of 2018 when the therapist was telling me to back off and to try to let my daughter take more control over her eating.


Typical mistake: Changing to phase 2 too early. We had that too. If I had earned a dollar for every time a therapist told parents to back off too early I would be rich now. AGAIN: not YOUR mistake. Listen to your gut before you rely on "professionals" the next time. And ask for help here 😉.

nancytaps wrote:
The psychiatrist diagnosed her with Generalized Anxiety Disorder and suggested she start Zoloft.  My husband and I had to think about the medication as we were not prepared to hear such a diagnosis.


I do not want to question the meds here but ANXIETY is a very common symptom of malnurished brains in EDs and normally fades away slowly with better nutrition and weight gain. Most ED kids are anxious by nature and have been before ED moved in but here the anxiety was on top of the roof in the dark days and always increased with weight loss and was better with weight gain. Today 1,5 years WR my d is in best state with anxiety ever since she was a toddler. So normally anxiety is a symtom of ED.

nancytaps wrote:
Six weeks later and 14 pounds lighter, I found food in her crawl space that she had been sneaking away (at this time, she was still going to school and eating lunches and snacks on her own - or so I thought)  I was not prepared for her to start doing this  I wish I had had the heads-up warning .  


Again, that was not your fault, no one of us was prepared for what they do with their malnurished brain and they do really crazy things and food hiding is common with that. Somebody here said "this was not in the baby books". You did not know that she is doing that now you DO know and you can do something against it and close that loophole.

nancytaps wrote:
Since her discharge, she has not gained any weight.  We have caught her putting food down her bra and down her pants.  Since being caught again, she is refusing to eat everything we put in from of her.  
Believe me when I tell you, that we have tried everything to get her to eat.  We can't physically force her or restrain her.  When a 15-year-old girl decides that she isn't going to do something, its pretty hard to convince otherwise.  


I know it is much harder to insist in eating with an older teenager than with a younger one but I think it is possible at any age when you found out how to do it. My d was 17 when we started refeeding and believe me, it was not easy.
First ideas: What are you actually doing when she refuses to eat what you plate? Can you give us more information what is happening there in your rooms? Do you have any consequences like tube feeding in hospital that you can get back to? Some parents here drove their kids to hospital to get tube fed when they refused meals and many kids started to eat in the hospital car park.
Keep feeding. There is light at the end of the tunnel.
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deenl
Hi Nancytaps,

scaredmom wrote:
Some have had to "pat down" their child after all meals to ensure they were not hiding food. It is to keep her safe and not because you don't trust her. I think deenl did it that way. It is ED you do not trust.


Yep that was me! When we discovered him hiding food, we used a very matter of fact and calm voice to say 'We can't have this. It's not safe for you so we will keep you safe and check that you are not hiding food' And we frisked him after every meal. The first few days were nasty but we kept our tone calm and matter of fact and he could see that we were deadly serious about this. After a few days he would turn his own pockets out and pull up his sleeves, all with plenty of attitude. We still checked in the jumper and socks and waistbands. After a few weeks he would remind me if I forget and a few weeks after that we could let it drop.

nancytaps wrote:
Since being caught again, she is refusing to eat everything we put in from of her.  Believe me when I tell you, that we have tried everything to get her to eat.  We can't physically force her or restrain her.  When a 15-year-old girl decides that she isn't going to do something, its pretty hard to convince otherwise.


I know my son was younger that your daughter but he has always been a very independent person. The thing is he is to this day still not convinced he is/was sick. We were still able to get him 90% better without having to convince him of a thing and we are still working on the rest. We were simply dogged in our determination to achieve our goal of nutritional rehabilitation and a happy life. But we were flexible in how we achieved it and we had lots of trial and error. We still do as our approach has to change as he achieved different levels of wellness and grows older. Here is a thread I started that has so many ideas from parents who kept going and going and eventually found an approach that worked for them. Mostly the parents were the motivation and drive for kids who could not find it themselves.

We found what worked for us by looking back at what had worked at other stages in his life and adapted it for the current situation. We also had certain things that we never, ever compromised on like medical supervision and working towards health. I considered all the ideas on this forum as a sort of menu and I picked the ideas that I thought suited the situation, some I adapted and some I kept in the back of my mind and used at a different time. It takes time but us parents do know our kids best. It is hard because we are so scared and panicked and we would love the professionals to work their magic. But this is a tough illness and much of the work happens at home. 

The absolute best tool in your toolbox is information. I used books to get a good overview of the knowledge I needed and refined that with detailed questions here. I was so well informed that I could argue for and against certain medication and demand that he take a full break from sport even when he eventually went back to school. The books I found most useful are:

When Your Teen has an Eating Disorder by Lauren Muhlheim. This is a very clear straight talking guide for parents. I am well through the traumatic refeeding but I have still found lots of ideas to keep us in recovery. It is really great for giving you the framework and detail you need fast but lacks some of detail that Eva's book has.

Here is the link to Eva Musy's website. Eva is a mom who has been through the AN journey with her daughter. Her book 'Anorexia and other eating disorders' is great with absolutely loads of information. When I was screaming out for the answer to BUT HOW this was the book that helped me.

Another book I loved is Carrie Arnold's Decoding Anorexia. Carrie is a science journalist and had Anorexia for over a decade. This book combines the biology of the illness (in a way us non-scientists can follow) with her own story of recovery. Fascinating read that helps you understand all the strange symptoms of the illness.

The website I found most useful was the Kartini Clinic blog.

This is an online educational tool that has lots of info too.

And naturally the holy grail of this forum which gave me emotional support, lots of ideas, the courage and knowledge to be a full partner in my child's care and a cheering section for each positive step we took.

Wishing you continued strength and courage,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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nancytaps
Thank you all again for the words of support and advice.  I will check out Eva’s website and videos.
yesterday we had an appointment with my daughters therapist.  My husband came (very rare), and for the first time I as long as I can remember the two of us sat down together (without D) and discussed some very important issues and came to conclusions.  This was progress!  In the end, the biggest decision that came out of it was to change our approach somewhat.  We (or mostly me, as I do 99% of the meals) are going to prepare and serve all of the snacks and meals and make it clear that our expectations are that she is to finish it all.  If she doesn’t finish, or refuses etc. we are to encourage as much as we can but not chase into another room, not hover and get cross, and not let it turn into an argument.  If in the end, she does t eat, then we will focus on the next snack/meal.  We are doing this because the relationship with my D and me is somewhat toxic now.  She hates me and is trying to use my other three kids as pons to get to me and to hurt me emotionally.  It is becoming toxic and harmful to the rest of the family.  We seem to be dragging her through treatment.  She doesn’t think she is sick and doesn’t think that she needed to be i the hospital the last 2 times.  She will end up there again, and we have to accept that but still support her along the way.  This is going to be very hard.
Nancy 
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scaredmom
She cannot see how ill she is. That is how sick she is. 
So how can we help you increase the calories? I am just thinking that if she does not eat a meal or snack, if the caloric intake was higher,she would not “get behind”. And then things hopefully will get better. It is so common to hate you and make life difficult. It does get better it take time and so much food. So please keep hope. Just because there is so much tension now doesn’t mean it won’t get better. It can be a function of her illness and not at all your parenting. 
My d hated me and said and did a lot of hurtful things and she does not remember it all. So please hold onto that!
what is she eating now? We can help.
p.s. I am glad you H came to the appointment. 
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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scaredmom
Hi.
How is it going?
I hope things are going well.
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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