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

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toonces
Hello, our 12 yo daughter started restricting suddenly and at a high level 3 months ago.  After a month of rapid weight loss, we brought her in for an evaluations and she went straight to inpatient.  She was inpatient for 5 weeks (3 on feeding tube).  After 5 weeks, we (us, daughter AND inpatient treatment team) realized she was stuck and receiving no more theraputic value from inpatient and was not gaining weight, even with tube.  They recommended residential, we wanted to take her home and try FBT/Maudsley as we had recently discovered it and thought it was a better fit with our daughter's age & maturity level.  She was discharged to us against medical advice three weeks ago.  We officially started FBT two weeks ago, but have only been in for an evaluation and one appointment with a therapist. 

Refeeding was going ok at first, some struggles, but we could get her to eat a little at each meal (would not eat snacks).  It got worse when we had the one session with the therapist, and the therapist mentioned that she had actually gained weight between the evaluation and the therapy session.  Since then we have been struggling mightily at home, trying to refeed via three meals and three snacks a day. Daughter will eat a decent breakfast, then maybe half of lunch, but won't touch any snacks or dinner. She has admitted that she can't because she doesn't want to be fat and "knows we are just trying to get her to gain weight". She is deathly afraid of eating or drinking anything with calories, but seems to be able to do the bare minimum at breakfast before locking down for the day.  It got worse when we had the one session with the therapist, and the therapist mentioned that she had actually gained weight between the evaluation and the therapy session.

We are currently preparing all her meals, serving them to her, expecting them to be be eaten as is (it's all stuff that she ate before) and wait it out as long as possible before we offer a supplement of Ensure, which she has also been refusing since the therapist mentioned the weight gain. 

Any advice is so greatly appreciated as we desperately want FBT to work and don't want to end up with her inpatient again.  The only thing that gets her to even touch a supplement or a bite of dinner is if we pack her bags and say we are on the way to inpatient as she does not want to go back.
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scaredmom
Welcome,
So so sorry you needed to be here. My d was 12 at diagnosis too and started with IP for 3.5 weeks. 
Please read around the forum. There are so many great resources that may help. 

What you describe is normal at the beginning and really tough to navigate. The therapist should not have mentioned the weight gain, for that I am sorry. It did affect your d and your efforts to feed her, but you can overcome that. My d said the same about us making her fat. It gets better with weight gain. I would suggest speaking in private to the team about your expectations and what they should and should not say in front of your d. They work for you and her.

You are doing well to hold on and keep steady with the expectation that she is to eat. Once more weight goes on and you have established 3 meals and three snack, it does get better. What exactly is she eating now? Is she eating anything at all after breakfast? Can you use incentives, like " you may have your phone after lunch" or "we will go to that movie after snack". 
Many of us have added in extra calories with oils to anything we could and cream to milk and yogurt to get the calories in and the weight up. Smoothies with oil and cream and high quality (higher calorie) ice cream can pack a wallop of calories and really get the weight up. It has only been two weeks that is so early, although it feels so long and gruelling. It is ok to threaten IP if she will eat, because that is a wise and proper course of action if she does not eat. 

Your IP team should have increased the NG feeds to gain weight I am sorry. I hope your FBT therapist is helpful. I have found that once I knew what I needed I demanded that from my team. If I said blind weights for D, then it was to happen. If I wanted to add a smoothie to her meal plan, I used the team to tell d that that was the next step for her treatment. It is hard to figure out what you need to do and get from the team at the beginning, but it does come. It is their job to support your effort to get the weight on her no matter how it happens.

Please ask all the questions you have. We all wish to help.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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toonces
Thank you scaredmom. We've been scouring this forum and visting sites like Eva Musby's. They are amazing and we are finding many people fighting the same battles, confirming thoughts/fears we have and getting tons of new information.

We will definitely take charge of the situation with the therapist and make sure she knows how much of a trigger ANY talk of weight is for d.

One thing I didn't mention in the first post is that d became a vegetarian (for "ethical and moral" reasons) and got really really into running shortly before the initial profound weight loss that lead to IP. She's got many close friends that are skinny as sticks, and either culturally or ethically also vegetarians. After reading so many other families' plights, it sounds like all of this (throw in middle school health classes about nutrition) was a perfect storm that our little girl couldn't/didn't handle or process correctly in her young developing mind.

She is stubborn as anything and will absolutely dig her heels in when challenged on some things, and unfortunately the vegetarianism is one she will not budge on. We wish so bad we could turn this around, but it seems unattainable at this time. So before the therapist appointment she'd eat beans, tofu, eggs, whole wheat breads/pitas/english muffins/etc, soy milk, cereal, oatmeal. We've been completely unsuccessful at getting her to eat ANYthing at all like milkshakes, donuts, even smoothies. Currently she won't touch any kind of fast food or other restaurant food.

Our big fear is her dropping back into being medically unstable. She is teetering right on the edge, and every day that goes by where she doesn't eat anything after 1pm seems like we shouldn't be just threatening to bring her back into IP, but like we should actually be doing it. We took her in today to her pediatrician and they said her vitals were ok (bp a little low), but that she was ok to go home. Her pediatrician asked her if she was motivated enough to do FBT and she said yes. This was followed by half a lunch, refusal of snack, and a "dinner" that lasted five hours. She didn't touch a bite of food (spaghetti with marinara sauce) and when she finally drank her supplement (only because we were taking her to the car threatening to go to IP), I tried to ask her to look at it so she could see what she accomplished and she completely lost it. "DON'T MAKE ME LOOK AT IT! I CAN'T". She was absolutely disgusted with herself and screamed maniacally for a good 10 minutes. She calmed down but we fear that what seemed like a significant breakthrough to us will only strengthen her resolve to not eat tomorrow.

Are our fears of her not eating anything after 1pm legitimate? We do make her drink smart water throughout the day. Should she really be IP right now or do we at least need to see a few more weeks of FBT and appointments through before changing course? These are some of the main questions we are grappling with right now.
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tina72
Some questions:
What do you do when she refuses meals/snacks? What consequences has that? What did you already try for incentive?
You write she is vegetarian (difficult, but possible to refeed), but then you write she will not eat milkshakes and smoothies. So is she vegan? This is in my eyes not possible in refeeding and dangerous for her bones and health. My d was vegetarian only 9 months due to AN and she has a bone damage now and had very low vitamin B 12 levels then. In my experience ANY limited diet is a problem with an eating disorder and you might need to fight that through. Has she been vegetarian many years before ED moved in or is it part of the disease? That is very often the case...

She needs to eat every 3-4 hours to keep her blood sugar level constant. No ED rules. You decide, you serve, she eats. That is the only thing that works. She wll go through the roof for some days but then it gets better.
Keep feeding. There is light at the end of the tunnel.
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Mamaroo
Welcome from me as well and sorry you need to be here. 

It seems that the vegetarianism and running is part of the eating disorder and need to go. I would definitely stop all sport and exercise immediately as she needs all calories to get better. As for the vegetarianism, it needs to go eventually as (I'm assuming,  you did not raise her a vegetarian),  but for now you can feed her only vegetarian meals and snacks provided YOU choose them and it contains lots of fat and fat and fat and protein. The brain consists of 60% fat and runs on amino acids, which come from protein. My d refed on a very limited diet and it helped us to get some weight on, before we reintroduced food. Today she eats what the rest of the family is having.

Below you'll find a link to my YouTube recipe channel,  click on playlists and you'll find my vegetarian recipes. They are all loaded with fats. Here is another recipe I made over the weekend:

Nut seed bar

400 g walnuts
150 g seeds (like sunflour seeds, whatever you have on hand)
150g desiccated coconut
........note: you can use any combination of nuts, seeds and coconut as long as it adds up to 700g
150g honey (for a sweeter taste another 50g can be added)
3 eggs
50g butter

Place the nuts in a blend until like crumbs, add seeds and coconut and mix together 
Beat eggs and add to mixture 
Add honey and melted butter and mix together 
Place baking paper in an oven safe dish and press flat well
Bake at 180C for 20 minutes 
Let cool and cut into slices

My d was only in IP to stabilise her medically and it was hard refeeding her at home. It took us 7 weeks to get her to follow the whole mealplan, so hang in there. Present each and every meal/snack with the expectation that it will be eaten. Give her 30 minutes, if she doesn't eat it, let her rest on her bed (no electronics,  tv or books, just boredom) and try again, rinse and repeat. Give her an immediate incentives when the meal/snack is done, such as phone time. At the beginning, I gave my d an incentive when she ate more than the previous meal until she could follow the whole mealplan. I also gave her a bonus when the followed the whole mealplan for the day (money which went to iTunes cards).

Things will improve, it just takes time. Sending you lots of hugs 🤗🤗🤗🤗
D became obsessed with exercise at age 9 and 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. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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Foodsupport_AUS
Welcome to the forum, sorry that you have had to find your way here. 
Getting started on re-feeding is really tough. I think it is important to know that some people cannot get it going initially but can manage to move things forward the further down the track they go. 

It is never a failure if some one needs to admit their child inpatient for medical stabilisation or move to a higher level of care. It is simply a reflection of the illness rather than anything else. 
You mention your D is very stubborn. Unfortunately cognitive inflexibility is one of the hallmarks of anorexia. The rigidity around diet, types, amounts eaten, weight gain etc.. 
It is important to know that one of the parts of FBT as per the manual is that weight is done and discussed at each and every visit. A search of the forum will show that many have found this problematic, whilst others have found it helpful. It definitely early on can make it hard for getting enough food in. 

I had a daughter her was repeatedly admitted to hospital for medical stablisation. Your D's reluctance to be readmitted is a positive thing. There is definitely a case for taking her back to the hospital if she is at risk of, or becoming more unstable. Is your paediatrician checking for orthostatic hypotension and postural tachycardia? These commonly are abnormal and often not checked. If you do decide to take your D back to hospital it can backfire. My D realised that she would never be fed in the emergency department and was willing to go in to be assessed, knowing that if a bed wasn't available and she didn't meet their full criteria she would be sent home. On the other hand, insisting on assessment - making it clear that things are medically important sets clear parameters as to how hard you should push. 
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
I just remembered what our paediatrician told my d at diagnosis and the therapist said the same: ‘ you will eat what your parents give you. The pediatrician also said to d that she will be admitted anytime if she does not eat properly. Our paediatrician is great! She did give me permission to bring d into the ER at anytime I needed to get her to eat.. we never had to do that as d listened to authority figures more than me. It did work to
my advantage as I could just say ‘well you remember what doctor R said...’ 
You state she is drinking smart water... I suggest either getting rid of that or weaning off of it and giving her sips of caloric beverages or adding in sugar to it. Not enough calories at all. I know sometimes we feel if they have something it is better than nothing but it is not at all, unless they are gaining. 
We did have a note from the therapist explaining d’s issues in case we needed to call the police for violence or go to hospital. It outlined her care team and issues of AN that would bring them to our home. 
School was and is still a great motivator for d. So not eating no school.. that did work for us. 

You ask above about your fears: yes to not eat after 1 pm is a concern. Has the pediatrician given a weight or amount of loss where they would admit her again? If she cannot eat enough at home Ip is needed but with the clear goal of weight gain ASAP. Was your Ip  ward an ED specialist ward? 

Planning for different eventualities was helpful for me. It empowered me as to what to do in the moment so I did not have think during a stressful event. 
I hope she is eating today.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Kali

Dear Toonces,

Welcome to this club that no one wants to join, as they say here on ATDT.
I'm sorry you are struggling with this and that your daughter is ill.

Many families on ATDT have had to have their kids in the hospital or residential treatment in order to jumpstart recovery, and it is simply because the illness is strong. And there are also many families who have successfully refed their kids at home. It doesn't really matter how or where the nourishment goes in; it just matters that it does go in.

FBT does do a weigh in when the patient comes in and does discuss the number. But you can try to go back to the therapist and explain what happened with your daughter when the weight was mentioned and that it made it more difficult and see if you can get them to work with you and do what they call blind weighins so that she does not see what she weighs and then to not mention or talk about her weight. Some patients have less anxiety when they do not know their weight. But if the therapist agrees to do the blind weigh ins you can ask that they let you know what the number is privately so you can see how the refeeding is going.

Since you are concerned about how medical stability I'm attaching the American Academy of Eating Disorders guidelines so you can take a look.

Have you taken a look at her growth chart and plotted where she needs to be weight wise? Restoring a patient to their historical growth curve and then continuing on that trajectory during their teen years is usually the goal with refeeding. Here is a link to the CDC growth chart. If you have her weight and height from her pediatricians visits throughout her childhood you can plot them on this chart and get some sort of idea about what you are aiming for weight wise.You can also keep track of her weight so that you can make decisions about her care.

https://www.cdc.gov/growthcharts/data/set2clinical/cj41c072.pdf

You can try to add something called benecalorie to her food. It adds 350 calories in a very small footprint and cannot be tasted in many sauces, soups, rice, oatmeal, etc. It can be ordered online. 

There is a eating disorders treatment center called Kartini Clinic in Oregon which has an excellent reputation working with children if you want to look into their program, and if you do a search on ATDT you can see what families have had to say about them. They work very closely with families.

In order to get her to drink smoothies, you can try a laddered approach. First try a fruit smoothie, add bananas strawberries, mango, or whatever combination you like and blend with some water and honey. Tell her it is fruit since that will be a "low calorie" option. Then as you go along and she starts being able to drink them try adding a little yoghurt and milk. Then after she gets used to that and can drink it, try adding heavy cream instead of the milk. My d. also refused smoothies at first but they became a staple at breakfast later on.

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This was followed by half a lunch, refusal of snack, and a "dinner" that lasted five hours. She didn't touch a bite of food (spaghetti with marinara sauce) and when she finally drank her supplement (only because we were taking her to the car threatening to go to IP), I tried to ask her to look at it so she could see what she accomplished and she completely lost it. "DON'T MAKE ME LOOK AT IT! I CAN'T". She was absolutely disgusted with herself and screamed maniacally for a good 10 minutes. 

It sounds as though it would be best not to compliment her on what she has accomplished when she has eaten. Although it makes sense to us as parents, while she is in the disorder, she is not going to experience eating as an achievement. 

I'm not sure if you have read this book but many parents recommend it. When your teen has an eating disorder by Dr. Lauren Mulheim.

https://www.amazon.com/When-Your-Teen-Eating-Disorder/dp/1684030439

Hoping that today will go better.

warmly,
Kali

 

 

 

 

 

 

Food=Love
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