GREETINGS, F.E.A.S.T. Community. As of July 1, 2018 you can access this forum directly without logging in at the main site. If this is your first login since that date please reset your password by using the "lost password" option. We apologize for the inconvenience. We are preparing a new website and services for the parent community to be rolled out soon! If you have questions or concerns, or trouble resetting your password, please contact us at admin@feast-ed.org



Custom Search of F.E.A.S.T. and Forum Content:
F.E.A.S.T's Around The Dinner Table forum
Register Latest Topics
 
 
 


Reply
  Author   Comment  
iwillfightforher

Caregiver
Registered:
Posts: 4
Reply with quote  #1 
Hi. I have never done anything like this before and feel a bit vulnerable. We are heading into our second year of FBT for our 16 year old with anorexia. And I am struggling. Wondering if FBT even works and wondering if I can actually keep doing it. We started out great initially and had great weight gain, but once we moved into phase 2, my daughters weight has continued to go right down and she is determined to keep it under 50kg because it means that I will have to keep caring for her. So we have had to start all over again and it isn’t going well. In round two, she has decided that she will not have anyone else care for her other than me, she stands all the time and refuses to sit at all, will not eat food prepared by anyone other than me, and has started to have such sever panic attacks that they require medical attention. The severity of round two has been overwhelming and I not coping well. My husband is very willing to help but she spirals into such a severe panic attack if it isn’t me. She has started to become much more violent and is constantly destroying things in her frustration. Although I have read all the the evidence that FBT is what is needed, I am beginning to feel a sense of hopelessness and questioning if it works. We are constantly told by her lead doctor that “parents know best” and every time I ask a question they assure me that they are confident that as parents, we will make the right decision for our daughter. The trouble is, I have no confidence to make any more decisions regarding her recovery and I have no idea what the right decisions are. I did everything that I thought was right and now we are heading into our second year, worse than before, with the anorexia is battling us with a vengeance.
I am probably not looking in the right section of the site, I am sure there are many stories of hope and recovery on here in regards wit FBT, so please point me in the right direction. I would be incredibly grateful.
OneToughMomma

Avatar / Picture

Moderator
Registered:
Posts: 1,191
Reply with quote  #2 
Dear iwillfightforher,

You are in the right spot, for sure.  I'm just sorry you have to be here.

FBT is the only evidence-based treatment for ED's, and it does give our kids the highest odds of recovery, but sometimes it just doesn't work.

This. Is. Not.Your. Fault.

Sometimes ED is just stronger than FBT.  Each person and each disorder is unique, and sometimes we just have to tweak the system.

It might help us if we knew where you were, as the quality of care varies across the world.

It sounds to me like you and d need more support.  Are her team saying anything other than 'you know best'?  Are they talking about next steps? 

Is she eating what you prepare, despite the violence and standing?  How much are you managing to get into her?  and how tall is she?  

If you give us a bit more information we will do everything we can to help.

Sending you a big hug

xoOTM


__________________
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
Kali

Avatar / Picture

Moderator
Registered:
Posts: 913
Reply with quote  #3 

Dear Iwillfightforher,

Welcome to ATDT. I hope you will find support here and I'll try to point you in the direction of some posts you can take a look at to see if they resonate with you and the situation you find yourself in. This is a very discouraging illness and it can seem to take forever before seeing improvement. I can feel your fatigue and despair and want to encourage you to hang in there. If possible take some time for yourself and try to find some things you can do to reenergize even if they are simple things you can do between mealtimes, like taking a walk in a beautiful place or a warm bubble bath or a good book or having someone else clean your house. The truth is that it takes a very long time. I remember heading into our second year of my daughter's treatment and her still ever persistent obsession with losing weight and feeling hopeless and thinking that it was never going to be over and my daughter was never going to get well. But it did get better and she is doing well now. We are a little over 3 years in since I knew there was a very serious problem and 2.5 years in from formal diagnosis. It took time and food and more food and meal after meal after meal....but heading into that second year was pretty dismal. I can hear that you wish your husband could help and relieve you of some of the stress. Is it possible that you could have him do the shopping for example? Make a shopping list together? Have him help with some of the never ending dishes and cleaning up after mealtimes? 

If she isn't gaining what she needs to now, you can close up the loopholes and increase her calories. There are some small footprint and high calorie options in this thread:

http://www.aroundthedinnertable.org/post/high-calorie-suggestions-696425?highlight=high+calorie+thread&pid=1303668194#gsc.tab=0

Here is thread about stages of fbt and how long it can take with a great post from Mamabear.

https://www.aroundthedinnertable.org/post/stages-and-timelines-and-how-they-set-us-all-up-to-fail-7917698?highlight=stages+how&trail=25#gsc.tab=0

and there is the stories of hope thread:
https://www.aroundthedinnertable.org/post/road-to-recovery-%E2%80%93-stories-of-hope-5720828?pid=1302645541#gsc.tab=0

and the learning center:

http://www.feast-ed.org/?page=LearningCenter

and the hall of fame posts:

http://atdthalloffame.feast-ed.org/

and if you haven't already, please check out Eva Musby's website. She has lots of practical suggestions; has some videos you can take a look at and has written a really helpful book:
https://anorexiafamily.com/

Please feel free to ask questions and I'm sure other parents will be along soon to welcome you to this club that none of us ever wanted to join, send along virtual hugs and throw in their two cents.

warmly,

Kali



__________________
Food=Love
deenl

Moderator
Registered:
Posts: 989
Reply with quote  #4 
Hi iwillfightforher,

And welcome. My son's recovery was very slow, rocky for the first year but then we started getting steady weight gain and eventually physical remission and massive improvements towards psychiatric remission. He is back at school and social again. All the emotional chaos is history. BUT FBT is not available where we live and my son was not at all responsive to the techniques.

So I took the principles; parents in charge of food, no recovery is possible without nutritional rehabilitation, nothing is more important than food and getting to FULL WR (a constantly changing target with a teenage boy!) and 3meals/3 snacks day in, day out. We had to cobble together a team to help just enough and it took quite some trial and error before we developed the skills to support our son.

I was a huge challenge and I was at times desperate, confused, overwhelmed and uncertain how to refeed. The real game changer was finding this site and using all the ideas on here to figure out the next step, and the next, and the next. I started a thread (link here) asking for all the ideas parents had for kids with very strong ED, additional complications or for whom standard FBT techniques did not work. It is a hugely diverse collection that resonates with 'parents know their kids best' and 'where there is a will there is a way'. If you come accross a story that strikes a chord with you, you can click on that persons name to the left and then in their profile click on 'Find all topics started by ...' and you can read more about their journey (if you're using a computer, I don't know about on the mobile)

It was difficult at the time and I was desperate for a professional to tell me what to do and/or to do it for me. Having come through it, I see that there has been a silver lining. ED has tried to creep back a few times and I am on it like white on snow. I have become the expert, not only on ED but on the combination of ED with my son's character. No external professional could have done it.

Please keep coming back and posting the particular issue of the moment. Parents will reply with all their wonderful ideas and you can choose which one suits best. If it doesn't work, try the next best idea. In my mind, family based treatment of ED can only have guidelines and principles but the details need to be discovered be each family themselves because the patient, parent and circumstances are all individual. The beauty of this forum is that you get a selection of ideas to get you started. There is no avoiding the trial and error. Feedback, not failure is one of our mantras. And it takes time to develop the SKILLS needed to kick ED's butt.

We're here for you. Ask away.

Warm wishes,

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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Mamaroo

Caregiver
Registered:
Posts: 462
Reply with quote  #5 
Hi, I know it's an awful feeling seeing your d struggling so much. As the other have said you can tweek FBT to suit you and your situation.

My d didn't want anything to do with her dad. She would walk out of the room when ever he walked in. She couldn't eat if anyone else except me was present. Now they are very close, so there is definitely hope for you.

Since she couldn't eat with others it was up to me to refeed her. Having said that, my h still played a big role; he would support me, tell me if ED is pulling the wool over my head (because sometimes I'll be so busy refeeding that I get lost in the details), distract our other daughter and made my life as easy as possible so that I can concentrate on getting the food in. So, it can be done if your d only wants you to be involved.

You are not stating at square one, you've been able to refeed her before and you'll be able to do it again. First you need a mealplan. Aim for 5 or 6 meals/ snacks a day. Print out a mealplan for the week, showing all meals and snacks, what will be served at each meal/snack time and at which time each meal/snack will take place. This will greatly reduce her anxiety. Place it on the fridge where all can see it.

Secondly you need a carrot (incentives such as time on her phone, meeting up with friends etc.) and a stick (bedrest with a book, additional medical appointments etc.). After each completed meal, give her a small insentive (our d could play on her ipad) as well as a longer term insentive (we gave points when the meal plan was completed each day, which added up to itune cards). See what leverage you have.

Rinse and repeat. It took my d 7 weeks before she could complete her mealplan and 8 months before she could eat without any incentives.

Eva Musby has a great book on how to refeed your child. This is her website, her videos are also great https://anorexiafamily.com

My is now wr for a year and apart from her picking a snack, we don't do phase 2, I've read too many times of children relapsing. Just focus on putting on the weight and getting her into the habit of eating. It takes a long time before they can feed themselves.

Best of luck and sending you plenty of hugs 🤗🤗🤗🤗🤗🤗

__________________
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. Now working on intuitive eating.
tina72

Caregiver
Registered:
Posts: 1,204
Reply with quote  #6 
Hi Iwillfightforher,
a very warm welcome from Germany and sorry that you have to be here.
What you tell us about your d I would like to add two points.
First: Many carers start phase 2 too early. Did you wait until she was fully WR? Did you gave her freedom back slowly or in a big step?
Maybe you need to go back to phase 1 for some time because:
Second: so much ED behaviour left points out that she might not be WR at 50 kg. How tall is she and did you figure out target weight by her former weight percentiles? If she always had been 50% she needs to go back to at least 50%. If she was 75 %, the same. Many teams set target weight too low. At 16 she is still growing and developing a female figure and that takes a lot of power.
So she will need to gain more weight I think. In our case there was a weight range when my d felt much better and most ED behaviour left.
If she tries to keep herself under 50 kg that is ED behaviour. Try to get her blind weight. That was a big change for us. My d does not know her weight any more and now it isn´t that important any more. If you let her stay underweight, she cannot recover. Her brain cannot recover.
Tina72
Foodsupport_AUS

Avatar / Picture

Lead Moderator
Registered:
Posts: 3,653
Reply with quote  #7 
Welcome to the forum. Sorry that you have had to join us here. 

You have received some good advice and thoughts already. Being a parent of a kid with AN is a horrible and thankless task for some years. We do it because we love our children, and no one loves our children more or will go to greater lengths for their recovery than us the parents. FBT is great, and yet it is not. It is the most successful treatment for anorexia in adolescents, but that doesn't make it wildly successful - just a lot better than many other options. Despite that there is hope and the majority of adolescents who get ill will make a substantial or full recovery. Working hard at FBT gives you the best shot a full recovery, and it takes a lot of work. That being said, even if you can't make FBT work for you, FBT has many principles that are essential to give your child the best chance. Full nutrition is number one. Maintaining this for a prolonged period of time to help her brain to recover. Supporting her to allow that to happen and then looking at any other co-morbids. She is not doing this to be dependent on you, her illness is in control and she needs you to help her. 

As she gets back to eating insist on her accepting food from elsewhere as part of her recovery. My D could not feed herself at all for the first four years of her illness. She needed every meal supervised, never requested a bite, everything had to be required. We could not get formal FBT to work because she was initially unable to eat outside of hospital for the first 18 months. She is now doing so much better. She is not fully recovered but she is studying at university, feeding herself, working on nourishing and caring for herself. Our journey has taken 8 years. A good outcome is 3-4 years and you have a great chance of that. There is light at the end of the tunnel. 

You may like to read our recovery thread. http://www.aroundthedinnertable.org/?forum=136439#gsc.tab=0

__________________
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.
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 2,212
Reply with quote  #8 
Hi,
I just want to drop by and tell you that there is hope. FBT can definitely work , I have a 16 year old in strong recovery living a normal life, doing great.
There is hope. We will try and help you. 
What country are you in? 
What does your treatment team consist of?
Best TF

__________________
Food is the medicine. Recovery is possible.
Torie

Avatar / Picture

Caregiver
Registered:
Posts: 4,991
Reply with quote  #9 
Quote:
Originally Posted by iwillfightforher
We started out great initially and had great weight gain


AWESOME!!!

That's the key right there.  THe first step is the weight gain, and you know how to do this.

Once she has regained all the weight she needs, we can help you along through Phase 2 and beyond.  The trick is to go s-l-o-o-o-l-y with handing decisions / responsibility back to your d.  Sounds like you didn't get good advice about that the first go round.  Ugh.  I hate reading that.

Would you like help brainstorming ideas to get her weight up?  If so, the first thing I would suggest is to add canola / rapeseed oil wherever possible so that the needed caloric intake has the smallest possible footprint and also to give her brain the needed dietary fats as the brain is made up largely of fats.  Most find it best to keep ED-kid out of the grocery store and the kitchen, and out of the food preparation / serving business.  Her only job is to eat what you serve.

I'm so glad you found us although really sorry you needed to.  PLease feel free to ask all the questions you like. xx

-Torie

__________________
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
iwillfightforher

Caregiver
Registered:
Posts: 4
Reply with quote  #10 
Thank you! Thank you! Thank you! I so appreciate all of your input and support. Just being able to connect with others on this journey is such a huge relief. I already feel deeply encouraged by what you have all shared.
Our daughter is 163cm tall and the healthy weight range we have been given for her is between 52kg and 55kg. Lately she has been trying to hover between 48 and 49kg. So not severely underweight but still not healthy. She was WR for 6 weeks at 54kgs and we were advised to start phase 2, and you are right, it was too early and too fast. Once we started that things just kept going downhill. Her care team think it is because she has no confidence in herself to be able to feed herself but I see reading many of your comments, that it isn’t uncommon for phase 2 to be difficult. She is refusing to eat snacks but has started to accept afternoon tea. Wage has managed to go to school throughout this but I see that we may have to either stop that or as she hasn’t been able to eat her lunches or morning tea. When we first started, I would go in everyday and she would eat lunch with me there, but as part of phase 2, she became responsible to eat her lunch on her own. Does anyone have any input on whatever to do for school? I am wondering if we should pull her out until she is able to maintain her weight but my concern is that she will just become really depressed if we do that because the only interaction she hasn’t with people outside the house is at school. She is also a part of a performing arts group that she really enjoys and as part of the preparation for different shows, they have quite a lot of overnight stays. In the past I have been preparing food and taking it for her to eat but this is difficult because people are asking why I am there and why she isn’t eating the same food as everyone etc. I have tried to keep life as normal as possible but I am wondering if I am just just enabling the ED. Does anyone have any recommendations for what I should do? I am feeling like I have made a mistake by trying to help her stay at school and continue performing. She has recently started on some medication to help with her crippling anxiety. She is not sleeping well because she is having at least 4 panic attacks a night so we are hoping that it may provide a little bit of relief for her.
Thank you again. I am very grateful. I have another daughter who is younger and I feel like she is bringing herself up as our entire focus has been on dealing with the ED. Any ideas on how to protect younger siblings from this? She tells me she hates her sister because of the constant stress in the household. The ED demands all attention to itself. It has targeted me for constant attack and I can feel it trying to burn me out, but every now and again I catch a glimpse of my daughter and it is so those moments that drive me to continue to fight for her.
tina72

Caregiver
Registered:
Posts: 1,204
Reply with quote  #11 
Hi,
just a short answer to throw my two cents in because of short time today (sorry for that):
1. She needs to go back to healthy weight range, if she is not able to do that on her own (phase 2), you need to go back to phase 1 at least with lunch and dinner.
2. Same with school. I would keep her in school for distraction but lunch is important. If she does not eat it there (any possibility to get that supervised at school?), you need to join her again or take her home for lunch and then bring back. My d is WR for 9 months now and is still eating lunch at home.
3. If she is refusing snacks, back to phase 1. Phase 2 is only possible if you are working as a team. Snacks are important because she needs to keep her blood sugar level constant. She needs to eat at least every 4-5 hours, better every 3-4.
4. Siblings: Try to tell her sister that she is not doing that to annoy her and that this is a serious disease. Try to seperate her if possible at hard times and ask a friend or family member to do some nice things with her.

Phase 2 is a dance. Two steps forward, one backwards. If it is 1 step forward two steps backwards you need to change something and go back. She needs to see that she is only allowed to make decisions if she can make healthy decisions.
Tina72
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 2,212
Reply with quote  #12 
Hi 
Here are some notes from another parent that I think are helpful, shared with permission.
1. You prepare meals

2. Do not allow your child in the kitchen during meal prep

3. Your child should not go grocery shopping.

4. Toilet before meal and no toilet for at least an hour afterwards.

5. If purging is suspected, use an open door policy in the bathroom, or have them count or sing whilst in there. And no flushing

6. Do not negotiate - whatever you serve has to be eaten

7. Use whatever leverage you have - phone, Internet, tv - whatever they hold dear is to be removed if they refuse to eat, until they have eaten. If they're older and are not financially independent, this is your leverage

8. Separate the two - Your child is not the ED

9. Detach yourself from the situation during meals. Do not get drawn into emotional discussions. THIS IS NOT UP FOR NEGOTIATION

10. Remember that your child wants to recover - the ED is stopping them

11. Your child needs your permission to eat. They need you to stand up to ED as they do not have the strength to do so themselves

12. 3 meals and 3 snacks per day (supervised) - do not deviate from this. Add time limits to the meals (as a guide/goal!). Ours (and the hospitals) was 30 mins for meals and 15 mins for snacks. In the early days this could extend A LOT. I made my Ds meal times the same as they'd be at school so that when she transitioned back to full time it would be easier and less anxiety provoking.

13. High calories are needed throughout refeeding with lots of full fat dairy. Some need as much as 6,000 cals with hyper metabolism, but the norm would be minimum 3500-4000 cals (for you to track not your child)

14. When they know you will not negotiate, I promise you will see the weight lifted from their shoulders... If only for very short periods

15. BE THE CAGE that keeps ED away from your child

16. When food is eaten be mum / dad again and have cuddles if they'll let you

17. 24/7 supervision - I slept with my D for 4 months - this will protect against them purging through vomiting or exercise. Many patients will exercise alone at night for hours on end when nobody else is awake.

18. All sport may need to stop in the early stages, and for those who compulsively exercised this could be long term.

19. Be consistent, consistent consistent!

20. Don't congratulate them after a meal or say 'well done' - just cheer inwardly! Likewise when (for girls) their period returns!

21. Learn from others. I found this website with stories of other parents journey through recovery to be extremely helpful - http://www.maudsleyparents.org/familystories.html

22. Recommended reading: 'Brave Girl Eating' by Harriet Brown

23. Be prepared for resistance, and lots of it! You will find your own way to manage this, but NEVER back down. Any compromise is a win for ED. Remember, you have to see the beast to slay beast!

24. Making decisions / choices is extremely difficult for them (painful to watch). This is true in areas outside of food too. If you've tried to hand over some control of a meal or snack and notice that they are struggling, that is an indication that it is too soon and that you need to be making those decisions for them.

25. Sometimes distraction helps during meal times. That can come in the form of games,TV, music. Whatever it is you control it and it only continues with eating.

26. Lean on us - you have 24/7 support here as FEAST/ATDT  is international

27. In some cases FBT isn't an option, generally if there are comorbids such as ASD and BPD (Borderline Personality Disorder) . It may just be that FBT needs to be tweaked, or that a different approach is needed. There are many here who have found ways to work around those comorbids or who can advise on an alternative approach which worked for them.

Hope this helps! Best of luck!
 

__________________
Food is the medicine. Recovery is possible.
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 2,212
Reply with quote  #13 
Her weight is really quite low.
Her bmi is just over 18. Food is the priority, Food is her medicine.
This may be of interest.

__________________
Food is the medicine. Recovery is possible.
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 2,212
Reply with quote  #14 

__________________
Food is the medicine. Recovery is possible.
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 2,212
Reply with quote  #15 
Eva Musby has a great book that I would really advise you to buy. 
Her website is also excellent with lots and lots of information.

https://anorexiafamily.com/

She also does private telephone coaching as another option for you.


__________________
Food is the medicine. Recovery is possible.
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 2,212
Reply with quote  #16 
Laura Collins also has excellent books and really great information on her podcasts.
She also  does telephone coaching for parents as another option.

http://www.circummensam.com/

__________________
Food is the medicine. Recovery is possible.
Torie

Avatar / Picture

Caregiver
Registered:
Posts: 4,991
Reply with quote  #17 

Quote:
Originally Posted by iwillfightforher
She is refusing to eat snacks but has started to accept afternoon tea.


She doesn't get to refuse snacks.

Quote:
Originally Posted by iwillfightforher
 When we first started, I would go in everyday and she would eat lunch with me there, but as part of phase 2, she became responsible to eat her lunch on her own. Does anyone have any input on whatever to do for school?


Sounds like you need to go back to what was working.  If she can't eat lunch at school without you, well, you need to be there.  Some here have had ED-kid meet them in the parking lot to have lunch in the car, or whatever arrangement works.

Quote:
Originally Posted by iwillfightforher
I am wondering if we should pull her out until she is able to maintain her weight but my concern is that she will just become really depressed if we do that because the only interaction she hasn’t with people outside the house is at school.


I would encourage you to keep her in school if you can.  It provides great incentive ("When you have finished breakfast, you can go to school.  When you have finished lunch, you can go back in.  WHen you are able to eat an extra snack to provide the extra fuel for an extra activity, you can do the after school activity.  etc)

Quote:
Originally Posted by iwillfightforher
She is also a part of a performing arts group that she really enjoys and as part of the preparation for different shows, they have quite a lot of overnight stays. In the past I have been preparing food and taking it for her to eat but this is difficult because people are asking why I am there and why she isn’t eating the same food as everyone etc.


Maybe figure out a simple explanation to offer.  Perhaps something like: "She is having metabolism (or digestive) issues so we need to do this.  It's kinda like diabetes." And then change the subject.

Quote:
Originally Posted by iwillfightforher
Any ideas on how to protect younger siblings from this? She tells me she hates her sister because of the constant stress in the household.


Oh gosh, this vile illness takes such a toll on the whole family.  One thing I would suggest is to make sure little sis knows that you will do whatever your kid needs - and if little sis needs intensive help at some point, you will most certainly be there for her.  And let her know you realize that this is impacting her life, and you're sorry.

Please keep the questions coming! xx

-Torie


__________________
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
melstevUK

Caregiver
Registered:
Posts: 2,670
Reply with quote  #18 
iwillfightforher,

This doesn't sound like proper FBT to me - it sounds like a cop out!  The clinicians should be backing you, and realise that she has lost weight and needs to get it back on again, even if it means going back to stage 1.

And if you are hearing

"Her care team think it is because she has no confidence in herself to be able to feed herself" 

then they really don't understand the illness and what a deep, deep hold it has for a long time.  It is quite clear that stage 2 was introduced too quickly.  

Can you speak to the team and ask them to back you, in front of your d, by allowing you to say that you need to be fully in charge of her eating again, so that you can get her weight back up?  She certainly will not recover or be able to take any responsibility for eating on her own if she is so many kilos underweight.

This sounds like a team which is still finding its feet with delivering FBT to me.  It is just a shame that you are possibly the guinea pigs.





__________________
Believe you can and you're halfway there.
Theodore Roosevelt.
iwillfightforher

Caregiver
Registered:
Posts: 4
Reply with quote  #19 
Thank you again to everyone that has continued to respond to me.  It has given me both courage and insight into what we are facing, as well as answered a few niggly questions I had in the back of my mind in terms of some of the responses we were getting from our treatment team.  I have actually found this forum more helpful so am very grateful.
I have two more questions:
1)  Safe foods:  One of the reasons that my daughter got into this situation was she began eating only "healthy" foods - or rather what she perceived to be healthy based on what certain "health and fitness" advocates suggested online.  When I began the first round of re-feeding, I made the mistake of giving her healthier food options because she was so malnourished, in my mind, she needed the healthier food options, but I have been told that it has only fed the eating disorder.  However, as I have read through the forum I have seen quite a few people that give their kids "safe" foods just so they will eat.  What are everyone's thoughts on this?  Do I continue making healthier food choices or is the right thing to do to give her quite a bit of junk food mixed in with the regular food.  This will cause significant anxiety and I don't know if I am just avoiding the trauma of it or whether it is a right choice.  Any advice?
2)  Have many of you communicated with others about your child's illness?  I have not really told anyone because I have found it to be such a misunderstood illness.  We live in a small community and she attends a small school and it is the type of place where everyone is in everyone's business.  As we head into our second year of re-feeding, I am feeling like I need some emotional support from friends as well as we may need to communicate to the school what is happening but I am not sure what to sure and how much and I guess I don't want to be met with judgment and misunderstanding.  As my daughter already suffers from such extreme anxiety, I don't want people saying stuff to her that could make it worse.  I feel like I am trying to protect her but I don't know what is best.  It is becoming a very heavy secret to keep and would really love your thoughts. 
Torie

Avatar / Picture

Caregiver
Registered:
Posts: 4,991
Reply with quote  #20 
My two cents:

The most important thing - by far - is weight gain.  So-called healthy food is pretty much the opposite of healthy for our ED-kids as they need plenty of dietary fats for brain healing and also, it is really, really hard for them to eat enough vegetables and cottage cheese to gain weight at a good clip.  (The faster she gains, the sooner she will be done with the worst of the suffering.)  So, if at all possible, I would encourage you to lose the "healthy" foods and feed her like a farm hand.  Bacon, butter, and canola oil (rapeseed in UK) are some of the healthiest foods during recovery.  

Who to tell and how much to tell them?  Great questions.  DH and I disagree on this point.  I think it is important to be reasonably open about ED as that is the way to knock down the stigmatism.  The school usually needs to know.  I needed support so at least some of my family and friends needed to know.  DH says that since there IS stigmatism, our d should not be hurt by "outing" her.  I humor him to an extent, but I am FAR more open about it than he is.  SHould make for an interesting discussion.  xx

-Torie

 

__________________
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Foodsupport_AUS

Avatar / Picture

Lead Moderator
Registered:
Posts: 3,653
Reply with quote  #21 
As Torie has said weight gain is really important at this stage. Defining healthy in foods is very subjective. Your D needs calorie dense foods as she needs a lot of calories to gain the weight. This does mean that she needs fats and oils in her foods. This does not necessarily mean using large quantities of processed foods which are also commonly labelled as unhealthy, but again they can be a good adjunct to re-feeding too. You may find there are some of these foods that are easier than others and that is OK to work with at first. Long term she will need the whole array. How fast, how varied early depends on her anxiety and yours. If you push to fast she may not eat at all. If you go to slow it may draw out the battle longer than needs be. You know your kid and how things are going. There really is no right way to do this. 

As for telling others. I think the school needs to know,  you ultimately may need some educational changes and supervision changes because of this. It is easier to tell them what is happening early. Friends and relatives I would be more selective, many don't understand. It can be a good point when discussing ED of mentioning things but also pointing to some literature and education for them, so they get how distressing things are. 

__________________
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.
tina72

Caregiver
Registered:
Posts: 1,204
Reply with quote  #22 
Hi iwillfightforher,
as the others said, there is not "one perfect" way for fear food. Some introduced it from day one and some (me included) waited for nearly WR and we found it easier after WR now. The further brain healing is done, the better it goes. The important thing is that you tackle fear food, including pizza, junk food, cake because the more variety they have in their eating the better is the long term outcome. There is no "healthy" food for AN patients. Every food is healthy, it only depends on amount. Eating only burgers is as unhealthy as eating only salat. The mixture makes it.

Communication about the disease:
That is really difficult because you are right, this disease is very bad known in our society and a lot of people have prejudice against it. Most of us lost a lot of friends and family members because they cut off contact.
School: I think school must know exactly what it is and I would tell them as much as possible because they really can help you and your d.
Neighbors, other people in the village: They already see that your d is sick. The kid just needs to have a name and they wont ask much. Tell them she has a rare digestive metabolism disease (which is true) and needs to eat special diet (which is true) and hopefully will recover soon and they will be in peace. If you keep it top secret, the talking starts. People are curious, if you give them something they are content.
Friends: I figured out very fast who my real friends are. If you tell them something about digestive disease and they keep listening and are interested, try to tell them what is the case. If they cut contact, they were no friends. If they listen and learn, they can help you a lot.
I have only two friends left and they help me to get back into life now. One has a friend with severe diabetes and she got it from the first words when I told her what is happening in our house, because she often has seen her friend with low blood sugar level and that causes severe brain problems, too.

Tina72

scaredmom

Caregiver
Registered:
Posts: 388
Reply with quote  #23 
Hi iwillfightforher,

my input on your questions:
1) Safe foods and "fear foods" For my D, at the beginning a lot of foods were fear foods. Either way the weight has to go on. I found it helpful to call all food good for her. All foods at the beginning are required, high fat and high calories are really important. It is easier to get in the calories with what you may think are "unhealthy". Canola oil and whipping cream and sugars really increased the calories which lead to less of a "food print" (ie less volume of food- easier for the ED) and really got the weight gain going. With weight gain it was easier to challenge her with "harder" foods. Honestly those things were the real medicine. Eating "normally" cakes and chips as well as vegetables and fish is your goal. Don't be scared of what ED is.

2) Who do you tell? Well I agree the school needs to know. They can really watch her too. We had a good team at the school. I explained that D was not to be active ie no gym or running at school etc. and they held her to that as they knew the rules as dictated by me. They supervised her with some meals etc.. It was not easy they had really no knowledge of what to do, but they really tried.

As for the neighbours, I told my D's friends parents so that when she had to have a snack at a certain time, they all understood that was her medicine. Yes I felt the stigma too and someone had the nerve to say she would grow out of it?? Tina72 makes a good point that they see she is ill. My D was in hospital so at first I just said she had a "heart" issue and that was the truth, her heart was truly weak and that is what she told people.It made sense, she could not exercise and none of the kids really cared what the real reason was. They were happy they could see her at school and hang out with her.
Only two friend sreally know what we have been through. As D is doing well now I just say that she is ok. At the beginning some knew the diagnosis but I did not talk about it. I know that people knew but no one (ie the adults) asked me or D how she was doing. As an aside, I learned from that, if I knew that people were struggling, no matter what it was I would offer help and let them know I don't need to know what is going on, but that I would help in anyway they would like me to. It has made me more sensitive to the suffering  right in front of me. 

Also don't underestimate that people around you are not affected by ED. In a general discussion with a colleague last week, I shared my D's struggle, well I was surprised that her mother-in law and sister in-law and her cousin all have ED. But they never got treatment like we have today and are still suffering. So sad. Another colleague shared his D has BN! Maybe more common than we think as we all tend to be so private.

All the best
XXX
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.

GREETINGS, F.E.A.S.T. Community! As of July 1, 2018 you can access this forum directly without logging in at the main site. If this is your first login since that date please reset your password by using the "lost password" option. We apologize for the inconvenience. We are preparing a new website and services for the parent community to be rolled out soon! If you have questions or concerns, or trouble resetting your password, please contact us at Admin@FEAST-ed.org

F.E.A.S.T. Families Empowered and Supporting Treatment of Eating Disorders
is a 501(c)3 charitable organization committed to maintaining the Around the Dinner Table forum as a FREE service for any caregiver of a loved-one with an eating disorder.

P.O. Box 1281 | Warrenton, VA 20188 USA

US +1 855-50-FEAST | Canada +1 647-247-1339 | Australia +61 731886675 | UK +443308280031 

This forum is sponsored by F.E.A.S.T., an organization of parents serving parents and caregivers of patients of all ages with anorexia, bulimia, and other eating disorders. Information and advice given on this forum does not necessarily represent the policy or opinion of F.E.A.S.T. or its volunteers and is meant to support, not replace, professional consultation.

F.E.A.S.T. is registered as a nonprofit organization under section 501(c)(3) of the United States Internal Revenue Code.

Terms of Use | Privacy Policy | Community Rules | | F.E.A.S.T. Principles | YMadmin | WTadmin
Custom Search of F.E.A.S.T. and Forum Content: