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

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

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mulbury
Hi all,
First post on here!
Any suggestions of dealing with refusal to eat/drink.
Just realised how much d has been hiding and now more vigilant and so she is refusing.
Also behaviour deteriorated to hysterical outbursts, head banging on walls.
Feeling desperate, trying to avoid in patient admission but not sure we can avoid it, if refusal increases/continues
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bonny
So sorry you are going through this - we had exactly this problem with S. He would just completely refuse point-blank to eat/drink things. It is so frustrating when you know you cannot just persuade them or force them. My sympathies. 

Quite a few parents on here have successfully done the zero tolerance approach, but when we tried that with S, he just dug his heels in more and became more and more uncommunicative and sad. 

We were very, very lucky that he got a place on an day-patient programme where they work on the teens eating their meal plan - there is no way we could have done this on our own and we would also have been looking at inpatient. Is there anything like that where you are? 
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mulbury
Thank you for the response.No day programme as such, been seeing camhs weekly since October but no consistent weight gain. They are going to increase input next week with home. Is its but not sure what thT entails, getting to the end of our tethers will be hospital next if no gain but that is scary sad cahms have said the outcomes of in patient treatment aren't great!
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Foodsupport_AUS
Welcome to the forum. Sorry that you have had to find us here.
It sounds like you have been really struggling to get consistent gain with your D and now when ED is being challenged more the resistance increases. This is really common. ED thrives while being partly treated and when the pressure increases so does the resistance. 
As bonny has said many here have successfully implemented life stops until you eat (LSUYE). This means calmly requiring that all food goes in. No one goes anywhere. There is a great definition of this in the Hall of Fame, see the top of the page. 
Others have worked on a co-operative approach, but it sounds like this is what you have been doing for the last few months and that isn't working either. 
One of the things about LSUYE is that it is not meant to be punitive. It tends to work best where your child has motivation to do something else, if they are at the desperate just want to die stage it doesn't seem to work. 

It is important to consider your plan B and C. If D is unable to eat at all have you considered taking her to the Emergency Department? The same if she is not drinking. Depending on what has been happening so far with her weight acute food refusal can cause very rapid deterioration in physical health and she may need admission to hospital for medical stablisation. 

If she is injuring herself does she need to go to hospital for this? 

It sounds as though you are in the UK, given you are talking about inpatient treatment and CAMHS. It seems like a standard line that is offered to parents that inpatient outcomes are poor and therefore allow children to languish with inadequate treatment as outpatient. Here is the thing, most of us have found that our children need what they need. Yes outpatient treatment if it can be achieved is probably best, it keeps the family together, empowers the parents in being able to help their own child and gives them confidence that they can keep going. If it is not working though then things do need to change. There are plenty of parents here who have used inpatient treatment of one type or another for their child. My D would be dead without it, pure and simple. Perhaps the reason why outcomes are not so good is because the children admitted are sicker, a bit like the outcome for those who have the flu is worse if they are admitted to hospital than those who stay home?
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Sotired
Hi,
I think everyone here has been told how 'bad' it is inpatient for our kids.for the most part that's bullsh$t to be honest-something the medical professionals say because they don't want to deal with it and they don't want to spend money on treating our kids.our d was memorably called "the million dollar kid", by one treatment provider.although I laughed when she said it the first time(I do that when I don't know what else to do sometimes) in actual fact it was hurtful and unnecessary.
I personally believe that with older teens the odds of them needing at least one inpatient stay are high.they have more access to the internet to get more tips in how to defeat us as we try to help them.its part of the illness ,but what it does mean for us as parents is that we have to be careful to keep all reputable options on the table,including not only hospital admission but also nasal gastric feeding if weight is not going on.
Sometimes those options are what saves our child.once I figured out that it mostly came down to money for the hospital,I took their opinions on outpatient treatment much less seriously and admitted my d as many times as she needed.
If your d is a restrictor and self Harmer then there are things you need to know.
The rule is 24 hours no fluid,she needs to go to a&e for assessment and fluid replacement.
48 hours no food, she goes to a&e for assessment and possible NG feeding.,in a hospital.
If your child becomes suicidal,talks about having a plan to get out of admission,that is grave cause for concern,requires a pysch consult and possible admission to a child psych unit where she can be kept safe from herself.
If there is a ramp up of anorexic behaviour-cutting,head banging,violence,then that needs assessment and possible placement at hospital.some parents here have had the police visit their home to explain to the teen what the next consequence of such behaviour can be.(that's for violence).
If you are forced to keep her at home then she needs as close to 24/7 watch as you can manage-I often slept in my ds room-my d also set alarms on her phone to wake herself up to exercise,so that stopped that.
If my d was left alone she always exercised.we had to take her out of school to focus on refeeding and when that didn't work we had to put her in hospital to get her refed via tube.she would come out,immediately restrict, after 24hours or 48 we would take her back to hospital and get her readmitted.
None of that is failure.in many ways you always have to be thinking of the next thing to do-as was said by foodsupport, you must have plan a,b,c,-all the way up to z if that's what it takes.we had to scour admission criteria and fight for the first admission-because,like you,we were told hospital was awful and a last resort.we got there and it was the best thing and frankly the only thing that kept my d alive.i dealt with a super resistor and for them,with rare exceptions,often hospital and Ng feeding is the most effective way to get weight restoration.they still have to learn to eat again in hospital,it's just its not all on you 24/7.
Anyway,sorry this is so long,but I just want to give you options and make sure that you aren't being scared out of good options by bad advice.
Sotired42
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seaglass
Sounds like you are in the U.K. We've been battling with the CAHMS system since October too. You say you will now get ITS. That means (well it does here) that you are moving from the first tier of outpatient care with weekly therapy to more intensive support. You might get a CPN (community psychiatric nurse) who can come to the house and help you at mealtimes and model or suggest strategies to help you get your d to eat. There might be an option to do day care so your d can eat there with supervision. You might also get a psychiatrist or psychologist who can start individual counselling with your daughter.

Things seem to happen slowly at CAHMS in our experience and you just have to keep asking and pushing for more support.

Do you do 'magic plate' (serving a plate of food that your d must eat)?. And does she just refuse? I'm sure you'll get good advice here from those who have been in a similar position.

Are drinks easier? You can get lots of calories in with shakes.

If she's really resisting then something needs to change. Inpatient care might be what she needs.

keep pushing for help.

It's so so tough and lonely and frustrating. The people here are amazing and give so much support and advice.

You may have read them but Eva Musby's book is great and full of practical tips and ways to help your child eat. Also the book ''Throwing starfish across the sea' gives me hope and the kick to keep on going
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mulbury
Thanks for your reply', it is mainly the Fortisip she is refusing which we add extra milk and fruit too so when she refuses we lose a lot of calories this also then leads to the behaviour deterioration which for my younger daughter is proving quite frightening.
Good to hear of your opinions in relation to in patient, reassuring should this be necessary
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Kali

Hi Mulbury

Sorry you are having trouble with the fortisips....if they taste anything like their US cousins, ensure or boost, they are in fact rather vile even if you don't have an ED! We use smoothies instead. 

Here is the recipe:

1/2 handful of almonds, ground  (adds protein)
1/2 cup full fat vanilla yoghurt
1/2 cup full fat heavy cream
1 banana
1/2 cup full fat milk
handful of strawberries, mango, or other fruit
a dash of vanilla flavoring
2 tablespoons of honey

You can also add some vanilla ice cream as well.

Don't let d. see you making it and if she asks what is in it you can say milk and fruit.

Blend the almonds first to a powder and then add the other things and blend them in. You can add a couple of ice cubes at the end to make it colder.

It probably has more calories than the fortisips and tastes much better. 


Kali




Food=Love
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meadow
Hi Mulbery,

Welcome, and as others have said, sorry that you need to be here.

Yes Fortisips are gross. We've substituted with chocolate milkshake (Frijj), which my D hates, but less than she hates Fortisip.

I'm not sure how helpful my experience is as our D is only 8, but how long will yours refuse for? We found that if we persisted and just kept on and on telling her that she needed to eat, she might hit, spit, scream etc for a couple of hours, but eventually she would give in and eat. Head banging was awful and we clearly had to intervene and make sure she was safe. I agree with what sotired says.

I also have a younger child, and yes it was terrifying for her. I don't know how old yours is, but we organised play dates and sleepovers whenever we could do that she could be kept from it.

I really feel for you in the place you find yourself. It's hideous isn't it. We're under CAMHS too, haven't heard of ITS here but sounds promising?

Good luck and keep asking on here because the wealth of knowledge is incredible. It's been an absolute God-send for us x
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4kids1dog
Sorry to hear about the difficulties... they are ever so present with ED.  My first suggestion is real food, things your D loved as a kid and grew up eating.  Most kids do like smoothies so I'll send my recipe as well.  Also, eating more frequently (smaller meals) was helpful for us so our D did not feel as full at any one sitting.  I recommend eating six times per day and we didn't let our D sleep in on weekends.  She still had to get up to eat breakfast so as to be sure to get the six meals spread out between about 8am and 9pm at night.  I also agree with the LSUYE - our D had to sit at table and was not permitted to get up.  That said, we have also been strict parents somewhat so defying us (she did some occasionally) wasn't something she felt comfortable doing.  I took some of her luxuries away a couple of times (computer and phone) and that really got her attention.  Sometimes I sat in her room at night for the last feeding and she could see I was bored but wasn't leaving until she finished so she just ate it to get me out of her room.  Just keep trying foods she used to love and be firm - small amounts are ok as long as you have her eat frequently.  Lastly, I kept conversation simple and would only say things like 'Food is medicine and your body needs it".  When she felt full I would say 'This feeling will pass shortly".  Also explained how her stomach had grown too small and needed to stretch like her other muscles so it was like a workout and I expected it would be a little uncomfortable at times.

Smoothie:

2/3 cup vanilla ice cream
1 cup fresh or frozen whole strawberries
1 whole fresh bananna
1 cup of ice
about 1/2 cup of whole milk



Place in blender and mix well.

Hugs to you.


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Mamaroo
Hi Mulbury

My D also ate/ drank next to nothing and unfortunately neither LSUYE nor magic plate worked in the beginning (now after almost a year, just the threat of sitting in front of a plate for 30 mins is enough to get the food in).
As some of the other posters said, IP is not the end of the world and could what is needed to jump start everything. My D was in a general ward for 2 weeks to stabilise her heart and then admitted to their ED program. She was discharged, but still would not eat at home. So we increased the outpatient appointments to weekly. She slowly only accepted ensures, first one a day (so a quarter at a time) until we could increase it to 6 a day, one at every meal and snack time. No sleeping in for us for now over a year!

I told her that I won't get upset if she didn't finish the ensure, but that the had to taste and had to have more than the previous day. We limited meal times to 20-30 mins. If she hadn't eaten what she should have, she forgo the incentive (ipad time, tokens - 10c a completed meal going to iTunes voucher, art, anything etc) and everything got reset. The next meal we started fresh, not dwelling on the failure of the previous meal. There is a great post with more ideas (http://www.aroundthedinnertable.org/post/the-super-resistors-when-lsuye-and-magic-plate-cause-total-shut-down-8122350?pid=1294656003#gsc.tab=0).

I can also recommend Eva Musby's book "Anorexia and other Eating Disorders: how to help your child eat well and be well". She gives plenty of advice how to stay calm (first lesson: fake it until you make it). She also has some great videos on youtube.

Water was tricker. Where we live we have very hard water and even filtering doesn't improve the taste a lot. I bought LQD flavouring and added it to water, but any type of flavouring would work as well. She also drank black / green tea. Now she drinks water without flavouring. When they gain weight, it gets better.

Lastly I found it better to reward behaviour instead of weight gain. Having 6 ensures a day for a week brought playdates back, following the mealplan for a whole day also attracted better incentives. Also, we were advised by the hospital to keep placing meals in front of her, even if the only thing she had was ensures. She tasted it, but never ate anything. When moving from the ensures to food (after many months) she transitioned more easily to the food she tasted, than the food she was never exposed to (even meat was easier than fruit).

Best of luck!
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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Izzo
Have to agree with TF's opinion. 

Just had a parent's meeting at my D's unit and the psychiatrist said that intensive treatment within the first three years of onset produces the best outcomes and yes there is a money issue involved in terms of funding from the NHS (which may be partly why they say family based treatment is the best). 

Many of the parents at my D's unit felt like failures after trying a year of FBT and then finding that it didn't work as not enough support was given through the community team when it was clearly needed. The only support my D got out patient was once a week with her psychologist, occasional 10 minute meetings with her psychiatrist - and then SH shot up leading to a psychiatric admission. 




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