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

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What do you do when your child is so dug in? 2017 Posts
Caregiver 214 posts eternalhope Caregiver 214 posts
eternalhope
Dear FEAST community, I chose the user name EnternalHope not because I feel that way all the time but because I have no choice in the matter and I have to remind myself that. I wish I wasn't here but reading your stories and ideas have given me hope. My 11y D was diagnosed with AN about 2 months ago and we are doing FBT. She has regained some weight but her behaviors have changed and she has become so dug in in her AN, we the caregivers have lost control. She has restricted so many foods, such as dairy, as well as snacks, and has been cutting off her food. She is leaving more food behind every day. She says she doesn't want to gain weight and she's become increasingly hostile even when we walk in the room. So long story short, I see a complete backslide and I don't know how to get back on track. She looked up calories of a food online and had a compete meltdown. From there, she had a 2 day hunger strike. When I have asked her to eat the cut off food, she threatens to not eat the next meal. She has followed through on those threats. I have been in contact with her therapist and doctor. We had kept her from school on those days but it did not motivate her. Instead she has become increasingly isolated and withdrawn and angry. She is medically stable so IP is not necessary. Does anyone have ideas on how we can get her to give us the control back? I know she needs to be eating more more to gain. I'm so worried she is backsliding.
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Torie Caregiver 5,752 posts
Torie
Hi EH - Welcome.  So sorry you needed to join us hear, but really, this is the best place for information and support.  The good folks here helped me pull my d back up the rabbit hole, and we are happy to help you do the same.

Your d is 11.  That is a blessing and a curse - terrible to see this vile illness in one so young, but a blessing because you still have loads of parental authority.

A few years back, one often read here about the 4 C's:  Calm, Consistent, Compassionate, and Courageous. That's so simple for me to write, but so hard for anyone to practice ... slip-ups are expected and normal as we are all human after all.

Have you read about Magic Plate? To me, that means it's the parent's job to plan meals, shop, cook, and plate, and the sufferer's only job is to eat (and stay out of the kitchen!).  Do you think you might want to try that?

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 ♡
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K63 Caregiver 855 posts
K63
Hi eternalhope , welcome to the forum, you are doing great this illness is so horrible. Have you watched Eva Musby s video how to help your child to eat ,if you google this it is very helpful . For our children with ed food is medicine but for them it is the enemy. I used to watch the video and it helped me to stay calm and it helped. . Recovery from this illness is never straightforward and takes a long time. Take time out for yourself so you stay well yourself as it is so difficult to stay calm and look after your child.
Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
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AUSSIEedfamily Caregiver 1,863 posts
AUSSIEedfamily
Dear eternalhope,

Welcome here there is lots of expeience & knowledge here.

You are in a position of parental authority with an 11 year old child and this is confirmed by society and the legal system. At the moment your darling daughter has a biological brain ilnness that is in the form of monster and or voice in her head that is in the position of authority over food. In every other aspect of your D she will appear to be OK.

The biological brain ilnness arrives when the person starts restricting food intake and becomes malnourished and starts to starve the brain and then to impact on its ability to think normally & rationally.

Does anyone have ideas on how we can get her to give us the control back?

The way that FBT works is for parents take control of all food and the eating of food.

The taking of authirity over food is kind of like what you might do with an 11 year old who decided they wanted to leave home, party all night drop out of school, hook up with a partner & get married. You would just not permit it to happen and you would take charge & authority to make sure it did not happen.

So in the case of taking control over food & eating for your D it will not be easy and the biological brain disorder monster in her head will fight you big time every step of the way. Be prepared for the potential thrown food & utensils plates, be prepared for some bad & horrible behaviour lots of insults and hate.

Read all the posts here about refeeding. there are many which describe the hard & difficult parts but these are also full of excellent advice support and guidance and success stories. Here are a couple of posts to read meadows posts & YogurtParfait_US recent & old posts

They have experience of young children. Meadow's posts are I think very close to what you are experiencing although her child is 8
ED Dad
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Foodsupport_AUS Lead Moderator 4,672 posts
Foodsupport_AUS
Welcome to the forum, so sorry that you have had to find your way here. As others have said there is great advice here, particularly on places like the Hall of Fame

You should indeed have hope as the most likely thing for your D with early treatment is that she will recover. Many people find that when they start FBT that the eating disorder symptoms seem to get worse rather than better, the eating disorder is being challenged and these do need to be addressed. It is certainly no reason to back off. As Torie has mentioned the 4 C's are helpful to remember. The other thing is to go from one meal at a time.

It is also helpful to remember that talking to your D about wanting to get better or gaining weight may be increasing her anxiety rather than decreasing it. She doesn't need to want to do either of these things for her to recover. Especially not at first. Her brain needs that nutrition and often as the weight goes on and the fog lifts she will start to accept much more of what is happening. 
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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Mom2DD Caregiver 134 posts
Mom2DD
Welcome and I am sorry you are here, BUT now that you are, its a wonderful place to be. 

My D was diagnosed at ten and although now, age 14.5, she has relapsed, having your d at 11 is a blessing (as mentioned above). YOU still can get control because she is so young, and her chances of full recovery IS better as well....something to hold onto. 

I was blessed because we introduced Magic Plate right away and although there was some ambivalence, there was never resistance. Please read up on Magic Plate, it is a fantastic healing tool...be persistent, make it work...."FOOD IS MEDICINE".

All the very best and please keep us posted.

Best Regards, 

Rhonda
I truly believe if love were medicinal, our children would all be cured! 
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bryony_1234 Caregiver 14 posts
bryony_1234
It's always possible to get better.
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mnmomUSA Caregiver 1,118 posts
mnmomUSA
You are the parent of an 11 year old.  At that age, you are in control.  What would you do if your child wanted to do something else that was dangerous or life threatening?  What if your child had cancer and wished to not take medicine which made them violently ill, but also treated the cancer?  Not taking it would not be an option, period.  Just would.not.be.an.option.  You'd use every parenting tool at your disposal to make it happen.

My child was 13 when she fell ill.  Our team immediately advised us to resume feeding her "normally" for her.  What this meant in practice was that she was "allowed' only her HISTORICAL likes/dislikes in food, which in our case were very limited (she never liked orange juice, for example), and EVERYTHING else was back on the table in normal rotation. Note that by the time she was diagnosed, the ED "allowed" food lists was very short: brussel sprouts, oatmeal, apples, broth, campbells tomato soup made with water....and similar.  Well, you can't get them healthy with that list of foods.  LOL.  So, it was gone.  Day one. Meal one.  And, it stayed gone.

She was told that she needed to finish the meal fully.  Leaving ANY food was reason to have to drink a Boost Plus.  Leaving more than 1/2, then it was two Boost Plus.  Didn't want to drink the Boost Plus?  Too bad.  Refused to do it?  She was told she would be tube fed.  Now, we never had to get that far in practice (the closest I got was collecting my purse and car keys to drive her to the hospital to get a tube inserted....after calling her team to alert them we were on our way), but I was 100% committed to doing it if I had to, and she knew it.

At first, this is a terrible, ugly battle....I don't mean to mislead you about that.  But, after a few days, she saw that resistance was futile, and that she WAS going to get the calories in, one way or another as not eating was simply NOT an option.  Things calmed down somewhat...and as her brain healed over the coming months, she became quite compliant. 

Others here have had great success in framing it as "life starts when you eat."  Want to go to school, want to use your cell phone, want to hang out with friends....well, you have to eat first.  Period.  No negotiation, no backing down.  Every kid has currency.  Find it.  Use it.

As for her googling and researching things, that only happens if she has access to the internet. Turn it off for her.  In my router, it is easier to "block" devices from access the internet.  Or take the device away.  You get your device back when you eat.  
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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EDAction Caregiver 402 posts
EDAction
Hi eternalhope.  I like your name.  It's appropriate as there IS hope.

First, you mentioned that you have a doctor and a therapist on your team.  It's so important to have effective professional help.  Is the doctor well versed in EDs?  Does the doctor understand and support using FBT?  How about the therapist?  You (parents) need the support of a good team while you are on the front lines of FBT at home.  

Second, you mentioned that you are 2 months out from diagnosis.  These are early days.  The learning curve is steep.  I recommend reading "How to Help Your Teenager Beat an Eating Disorder" by Drs. Locke & LaGrange to start.  It will give you a solid foundation.

And keep coming back to the forum.  You will find information and support from people who've been there.  You CAN do this.  And there is every reason to believe your D WILL recover.

Thinking of you.
DD diagnosed with anorexia at 14; FBT at home with the help of psychologist and medical dr; 3+ years later and doing well (knock on wood)
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eternalhope Caregiver 214 posts
eternalhope
I have been so moved by everyone's reply. God bless you all. I feel like we have made so many mistakes by negotiating with the terrorist. We are trying to course correct and your input has been invaluable. I'm going to continue to come to this site and community because it makes me feel like I'm not alone. It gives me strength. No one can appreciate this Terrible disease until they've gone through it. You all are wonderful.
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Torie Caregiver 5,752 posts
Torie
eternalhope wrote:
I feel like we have made so many mistakes by negotiating with the terrorist.


If time travel were possible, we would all buy tickets to go back and correct our errors. Since we can't, the best we can do is forgive ourselves and do the best we can today. Beating yourself up for mistakes in the past doesn't help you; it doesn't help your d - the only one it helps is ED because it takes a toll on you.  Your d needs you to be as strong as possible!  Keep looking forward, one day at a time, one meal at a time - or, when the going is especially rough - one bite at a time.

Your d is lucky to have you. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡
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mnmomUSA Caregiver 1,118 posts
mnmomUSA
Gosh, I've made more mistakes in dealing with D and this terrible illness than I can count.  LOL.  Feedback, not failure.  I've course corrected a TON, most notably when I decided to (finally, finally, finally) take the advice given to me very early on from the wise women here to move my D's weight higher.  For a fact, I wish I had done that in the first 12-18 months of her illness, rather than waiting nearly 3 years in.  Sigh.  What a mistake that was.  But, it's the past, I can't undo it, all I can do is try to reach out on this site and educate others so they don't make that same mistake.  

There is so much collective wisdom here.
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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eternalhope Caregiver 214 posts
eternalhope
I'm back again, and my D is cutting off more food than ever. In response to some of the questions.. our FBT therapist never called it Magic Plate, but I did take over feeding her. I quit my job and pick her up from school 2x a day, although she's missed a ton of school. At first things went well, but then upon discovering the calories in certain foods, she started
Refusing so many things, including all dairy. Days when I tried new things, she refused to eat at all. So we got locked into one thing.. she was gaining and did well over several weeks. I got very concerned knowing it was too dependent on one thing. Her doctor told me I was too intense and these things take time. He said my job was to deliver the food and she was doing fine. I knew she wasn't doing fine. I felt like he (infront of her) undermined the problem and made it look like I was the problem. Then she stopped eating the one thing that was helping her. At our last appt. after her 2-day hunger strike, he basically said I needed to relax. I had emailed him pictures of the cut off food. He's an AN specialist with over 30 years of experience, but there was a disconnect in his understanding of being firm with the expectation of he plate being finished and the patient giving over control. Our therapist has been great, trying to help us figure out a plan to get back on track. I know D is not getting enough. We are so afraid of her not eating and outright refusing food, we've gotten ourselves into a viscous negotiation cycle. I have lost my confidence. Although I did go to the doctor today to get some sleep medication. My husband is on board, but he struggles with being consistent and going the distance. He doesn't want to be up late if she doesn't finish her meal because he has to go to work early in the morning. Our house is so small, you can hear everything, such as tantrums, etc. Eventhoguh she's medically stable, my gut tells me she's headed in the wrong direction.
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Torie Caregiver 5,752 posts
Torie
Your instincts are spot on.  Trust them.

Many here (raises hand) initially found professional "help" that is worse than no help at all.  If you don't mind telling us what country you are in (sorry if you already did and I missed that), we can try to help you find more helpful help.

Sounds like the doc is hopelessly, dangerously out of date with current ED practices. ("At our last appt. after her 2-day hunger strike, he basically said I needed to relax.")

Yikes!

I'm pretty much stunned speechless.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡
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eternalhope Caregiver 214 posts
eternalhope
We're in the US and our therapist is trained in FBT, the only practice in our area. The Doctor recommended the practice, as he's monitoring the medical piece. All of the advice we've been given by the therapist is on point with everything I've read in this forum, on maudleyparents.org and in the four books I've read including the book by Daniel LeGrange. That's why I was so caught off guard at the last 2 doctor's appointments because he gave "counseling" like feedback that didn't address real world situations, such as when they don't finish the meal or leave the table. For example, he said walk away from a tantrum. I think his intentions were to not argue and engage in an unwinnable power struggle. I see how little she's eating now, and I know I need to be persistent. He stressed compassion, which I'm really focusing on. Today was tough. She ate very little and left the table. She became violent, hitting, kicking and throwing things at me when I followed her into the bedroom. I'm confused at what point to walk away. She threw 2 plates today and was destructive. But I didn't give up. So I've been trying to get her to eat more, talking to her on/off all afternoon to no avail.
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eternalhope Caregiver 214 posts
eternalhope
Thank you toothfairy. I hadn't seen this before. Great video. You all are wonderful to respond. Thank you Torie for checking back.
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Foodsupport_AUS Lead Moderator 4,672 posts
Foodsupport_AUS
I know well that situation you get into where they are eating something but not what you require them to, and we fall into the trap of well at least it is something!  Ideally we want to create the situation that there is no option but to eat what is provided, insisting there is no option and then working on plan B when it is not happening. It sounds like at the moment there is no plan B or C for unplanned meals? Can you insist on a supplement if a meal is uncompleted, consider whether the Emergency Department can help you out (it works for some but not others)?
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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mnmomUSA Caregiver 1,118 posts
mnmomUSA
Where are you in the US?  There are a lot of people who call themselves "FBT" who are not.  The advice you are being given to "relax" leaves me horrified.  In an anorexic, a refusal to eat for two days is a medical emergency, not a reason for a parent to "relax."  Good grief.  And, eating a limited diet is just never a good idea.  I can't imagine anyone trained in FBT (well anyway) that would recommend or support such a thing.  One of the chief tenants of FBT, as I understand it anyway, is that the parents decide what to eat and how much....the child's ONLY job is to eat it.  No negotiation.  So, "allowing" or in any way supporting the notion that a limited diet is ok, just flies in the face of the core principals.  No parent "decides" that a diet limited to a single item or small group of items is ok!  

If I were in your shoes, and looking to jump start this whole thing, I would run to the UCSD one week family intensive program in San Diego.  Yes, I know it's probably inconvenient unless you happen to live in California, but my goodness, it would be the PERFECT place to restore your confidence and get you headed in the right direction.  They are wonderful.  We went after two full years into the battle, and I wish I had done it much sooner.  It really got my husband and I on the same page and pulling in the same direction.  

It was covered by my insurance (at least most of it).  I did have to cover our travel expenses, of course, but it was worth every single penny. We were even prepared to pay the entire cost out of pocket, if that's what it took because we needed to get over our final hurdles and get my daughter well.  The cost, I believe, if you don't have insurance is $5000 or so.  A bargain, IMO, for a week of intensive therapy that will focus your family like nothing else on how to win this battle.
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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Torie Caregiver 5,752 posts
Torie
I agree with mnmom that UCSD week program is worth the expense, based on how many here have said they wished they had gone sooner.  There's a related one in Ohio (?) I think.

Hang in there. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡
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mnmomUSA Caregiver 1,118 posts
mnmomUSA
The one in Ohio, Center for Balanced Living, is for people 16 and up, I think, which is why I didn't recommend it.  :-)  It's good though!
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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eternalhope Caregiver 214 posts
eternalhope
I'm so glad you all mentioned the UCSD program. Our therapist has mentioned it to us and I was reading up on it today. I was trying to wrap my mind around how it would help us. You went after 2 years of battling AN? Can you help me to understand more about it? To be fair, our FBT therapist had encouraged us early on that everything she had eaten before was fair game. We've seen the therapist about 7 times now. But our D started to refuse fettucine Alfredo, pizza, hamburgers, fries and other high calorie foods. In desperation, we failed heed the therapist's advice and went with safe foods, which became smaller and smaller. The problem was us. The therapist did her best to offer up suggestions and support us.
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hope21 Caregiver 13 posts
hope21
We have been where you are and although we have ups and downs we are through the phase you are at. Hold in there it's so hard!
What is your D's weight and height? How often is she weighed? Is she getting regular bloods and ECG?
My d was 12, 157 cm weight at 38.4 kg was put on immediate bed rest due to heart problems and rising to standing BP. She was then checked every week for bloods/weight and ECG. Prior to IP she was checked every day. Not that I would want to scare you but she needs checked as things change quickly especially if she is not eating for days.
I research lots and tried to high cal shakes, and life stops till you eat. Sitting over a glass of milk for hour after hour..
IP saved her life and the strict routine. The hospital approach is different but effective.
Given set amounts of time for meals and snacks and the times they can't be left on own. Perhaps trying this might help??

So 7:30 breakfast, 30 mins to eat. If not eaten supplement given. All food on plate must be eaten. Then to be I company for 60 mins after.
AM snack 10:00 15 mins to eat if not eaten removed and supplement given. All food on plate must be eaten. Company for 30 mins.
Carry on three snacks and three main meals.
We didn't have a huge success on this at home prior to IP and the mere sugggestion of taking food away was barbaric! Surley getting something in was better??
I didn't take food away but we tried to establish the pattern. I kept a food diary of all that was eaten, I still do.

This is what they did in the hospital (five week IP) stay., it worked!! We still follow the meal plan. Not as strict with times and don't always ask her to be restful after all meals as not possible with school.

In those early days I used distraction and reward. We might go for a drive after dinner if all eaten. Or when a bit better a short walk.
While eating we watched rubbish tv, I've now watched the hundreds of seasons and episodes of Gossip
Girl! Not everyone likes to use tv but it helped my d eat.

The dietician introduced three potions of dairy each day. Again we struggled with that at home. Got as an IP so we still have in today.,

I'll end in something positive in that my D doesn't really remember her 'dark days' her words. She was so lost in her ED. But she is doing so well. And often says ' I choose life'

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mnmomUSA Caregiver 1,118 posts
mnmomUSA
UCSD can help by:

(1) Providing the absolute best treatment, with the evidence to back it up.  So, they cover a lot of the basics of FBT,  and the science and reasoning behind it.  

(2) Helping the caregivers understand the emotional impact of an ED....this is the part that really helped my husband.  He was able to be much more consistent and compassionate.

(3) Giving you real life tools and techniques for eating with your child, and how to support them in doing so.  You eat with the therapists present, and they are able to offer you on the spot feedback and coaching....for multiple meal and snack times during the week.  Yes, in classic FBT, the therapist shares one or two meals with the family, but there's a world of difference between one or two and 10-14 meals and snacks. HUGE difference.  

(4) Learning from other parents...usually 4-5 other families are with you for the week, and you learn from each other.  And, you support each other.  It's like the FEAST forum on steroids.  

(5) You leave with a contract....it contains what YOU need to be successful.  It spells out clear expectations for the patient, rewards if those expectations are met, and consequences  if they don't meet them.  It removes negotiation, and emotion from the process once you return home.  It was this tool that really helped us get over the last of the hurdles to wellness.  

There were families at all "stages" of treating ED....some newly diagnosed, some further along in the process, and some years into it.  It was helpful and useful to all of us.

My regret is not doing it sooner.  We perhaps wouldn't have had to struggle for quite as long.

There are quite a few others here who went to UCSD, and I don't think anyone regrets it.
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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mjkz Caregiver 1,707 posts
mjkz
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I know I need to be persistent. He stressed compassion, which I'm really focusing on. Today was tough.


I wish I had found this place when my kid was 11.  Just don't let compassion stop you from parenting too.  Violence in any form is not acceptable.  Safety first.  I know it is hard but violence will just get worse as anxiety does if you don't nip it in the bud soon.
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eternalhope Caregiver 214 posts
eternalhope
Thank you all for the wonderful responses and for the information on the intensive FBT program. They have openings and my husband is on board. To answer a few questions, D is not eligible (our insurance would not cover) IP treatment at this time. She is seeing a pediatrician who specializes in eating disorders once a week now at my insistnance to check vitals. 2 days ago, he said he vitals were better and she was medically stable. She is still in the normal weight range, although low. But she stopped menses so her body is still not operating correctly, and her heart rate is lower than it should be. She still needs to gain back more than 1/2 of what she lost. We had success with FBT (through a weekly appointment with a therapist) before we started negotiating. We need a reset button, so thanks for the info. I'm looking more into it tomorrow.
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