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

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Nicstar4
No weight gain for a month now plus this week she lost 700g. She had camp which was a factor. She went because we all thought she would eat more there as she is good in front of friends with eating. However, guess AN got in deeper! Long and short, we are unable to complete whole meal plan, with supervision at school, and home, she is still skimping on snacks, shaving meals. This has been going on for over 6weeks and AN behaviours have increased.
Psychiatrist said we had to gain 2kgs by next apt, not until 21st Nov. if no gain, then consider IOP or IP (that was before she lost 700g last week.) after that minimum gain 5kg more, which still will not be where she is supposed to be, but that is another story.
However, I think she is in a downward spiral and feel I should get psychiatrist apt sooner if I can.
I was somewhat fooled into thinking she was doing ok as mood improved with meds. Dietician reminded me that if she is too happy, usually meant AN was winning battles.
It is near impossible to get that food in, feel awful that we have not had weight gain for so long now, and that despite all efforts, I am still not able to get enough in.
She is on sustagen to try and compensate for the bits of food she is not getting in. She is ok with taking sustagen, think I may have to get her to have it more in the day.
She is absolutely refusing to eat everything on the plan, and knows when I have added extra calories, used extra cream milk. I have discussed that we have to push through the fullness, and keep going. I have refused to let her go places until she has eaten, we are scaling down activities. I do need to get the other kids where they need to be, which can make it harder.
I am at a loss as to what else to do to get the weight up.

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Ronson
I’m sorry to hear this nicstar. What happens when she refuses - does she have the supplement each meal ? Can someone stay with her while you take other kids where they need to be or vice versa? Have you tried removing phone/I pad etc ?
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OneToughMomma
Dear Nicstar4,

I'm so sorry.  I do see one positive:  you seem to have a good team.  This dietician has given good advice and it sounds like the psychiatrist is supportive. 

Maybe you should see if you could get an earlier appointment. There's no harm in going early.

Can you think of any specific areas where we might be able to help?  Any strategies or recipes that might make things better?  Ronson's questions might help you come up with a request.

sending 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]
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Warrior1
Hi Nicstar,

Sorry to hear you have not seen any weight gain. The only thing I think may work here is to completely stop everything until you see consistent weight gain. No school, no avtivities, no going out with friends etc unless she eats everything required. At the beginning of refeeding we didn’t leave the house for nearly two weeks straight. Activity of any kind has to be really limited to start with. You need to encourage lots of sitting around watching tv etc so D is not burning any calories if you can help it. It was a gruelling few weeks for me constant asking D to sit, constant routine of feeding, 24hr supervision. Can you ask for help with the other kids during a spell like this? I had to get granny to take my other two away during this time for us, it was awful but it worked my D gained 1.5kg each week using this method? Xxx
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seaglass
It sounds like you’ve hit a wall and need to stop, breathe and start a new plan.

I would stop everything. No school, no exercise, no activities. Clear the decks if you can (you might have to get help and support for your other children). Then plan three meals and snacks all with high calories. Add rapeseed oil, cream, benecalorie to whatever you can. Have a plan b and c for refusal. If she doesn’t eat then she has a supplement of high calorie smoothie, for example.

When My d stalled in weight gain I really thought about the meal plan. I made every snack and meal
As high cal as possible. And I tracked calories with an app just to see how we were doing each day and to have a clear guide to how many she needed to start gaining.

It’s hard. But you sound like you know what to do. We can all cheer you along and help with any issues you face
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Seashell
I have the same problem. I can’t get daughter even to the table. She refuses to leave her room and missed last clinic appointment. Has anyone had home help?
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tina72
Seashell wrote:
I have the same problem. I can’t get daughter even to the table. She refuses to leave her room and missed last clinic appointment. Has anyone had home help?


If she does not come to the table the food comes to her. She can eat in her room and even in her bed. You can spoon feed her. You need to make not eating impossible. Think about it as she has cancer. If she would need to have chemotherapy you would sit beside her bed with the meds in your hand and you would not leave the room before she had taken them.
Food is her meds. You need to get that food in no matter what happens. It will take you many hours at the start to get that 3 meals 3 snacks into her. I sometimes felt we were feeding the whole day and nothing else. That is what you need to do. No food, no other life.

Tina72
Keep feeding. There is light at the end of the tunnel.
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tina72
Nicstar4 wrote:
No weight gain for a month now plus this week she lost 700g. She had camp which was a factor. She went because we all thought she would eat more there as she is good in front of friends with eating. However, guess AN got in deeper!


So camp was a fault and you know that now and you book it under experiences and learning. No camp and no overnight stays for the next time.


Nicstar4 wrote:
Long and short, we are unable to complete whole meal plan, with supervision at school, and home, she is still skimping on snacks, shaving meals. This has been going on for over 6weeks and AN behaviours have increased.


So if she is still skipping snacks and meals because of lack of supervision you need to close that loopholes. If you cannot trust her having snacks on her own, she must stay at home. No school, no activities until you see weight gain.

Are you sure she is not purging or secretly exercising?


Nicstar4 wrote:
However, I think she is in a downward spiral and feel I should get psychiatrist apt sooner if I can.


I do not think that will help much because the psychiatrist will not make her eat. You need to increase food intake and stick to the MP and close loopholes.

Nicstar4 wrote:
Dietician reminded me that if she is too happy, usually meant AN was winning battles.


You seem to have a good team. That is why I asked for purging and exercising. Normally no weight gain and good mood means AN had found a loophole.


Nicstar4 wrote:
It is near impossible to get that food in, feel awful that we have not had weight gain for so long now, and that despite all efforts, I am still not able to get enough in.


It is not impossible. You "just" need to find out what is working. Try to explain to us where your problems are (more detailed). We can help you with ideas. You can do that. We all did and we are no superheroes. We are all ordinary families.


Nicstar4 wrote:
She is on sustagen to try and compensate for the bits of food she is not getting in. She is ok with taking sustagen, think I may have to get her to have it more in the day.


That is a good idea. If she accepts that, add more to the mp until you see weight gain.

Nicstar4 wrote:
She is absolutely refusing to eat everything on the plan, and knows when I have added extra calories, used extra cream milk.


It is not her decision. If she refuses, she gets a supplement. She must learn that not eating is not possible. Can you telll us how a meal is normally going on in your house? What do you do when she refuses or complains about added stuff? How does she know that?

Nicstar4 wrote:
I have discussed that we have to push through the fullness, and keep going. I have refused to let her go places until she has eaten, we are scaling down activities.


Discussing with an AN patient is lost time and power. That will lead to nothing. It is a good decision to stop activities or make them depend on eating before.

Nicstar4 wrote:
I do need to get the other kids where they need to be, which can make it harder.


Can you ask another mom or a family member or a friend to help you to get the other kids to A,B,C so you can concentrate on your sick d?

You can do that. It took us about 6 weeks to get all the food in and see steady weight gain. It is normal that you struggle at the start. Do not give up now. You are doing the right thing but you need to learn how to do it. Every family is different but many things work in most families so give it a try.

Tell us exactly where you are struggling and we can help you with ideas, recipes, whatever.
And we can send a hug if needed.

It will get better. You will learn that. I also thought I cannot do that and she will never eat all that and today she is eating everything she ate before and with pleasure. So do not give up.

Tina72

Keep feeding. There is light at the end of the tunnel.
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Nicstar4
Thank you so much for support everyone.
This evening was good. She ate everything presented to her. I had to scrape the pot of yoghurt, as too much left behind, and just repeated, you don’t choose, I do, your job is to eat, mine is to make sure you do, and eat everything.
Weekends are hard, especially if she has been at her dads. I have decided to keep weekends more structured, and everything will be dependent on eating. Her dad is in a depressive episode at the moment which complicates.
I think the gaps are school too, as some things coming back in lunch box. Need to ask that they make sure everything eaten, if not I will go and supervise.
She knows now if things are not eaten, they will be added on.
I think I will just have to keep going and keeping the framework tighter. I hope that I will get better at this. Persist.
I will keep a close eye for other possibilities as exercise and purging.
You are right Tina72 there is no reasoning with AN, ever.
I will have to up my skills and supervision, and pull in some favours from friends with the other kids. My partner is supporting me, but has his kids to focus on too. He helps out with taking my kids to places when he can, but I don’t want to let them be taken by others all the time. Trying to make sure they get some of me.
Time to rest up, night all
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Seashell
Thx everyone for replies. Comforting to know others out there having to go through same thing. I get food is medicine but she is completely non compliant. When I take food to her room she throws it on the floor and kicks me and throws things at me until it’s so dangerous I have to leave. I come back and same thing happens.
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mjkz
Nicstar, it really helped with my daughter to stop everything and slow reintroduce it with weight gain and compliance with meals and snacks.  If she does well with the supplements, use those more often and keep adding cals.

Seashell, one of the first things I did with my daughter was get across to her that violence and abuse was a no go at any time.  I got kicked once and it ended there.  I called the police and was very lucky to have a couple of officers who laid down the law (no pun intended) for my daughter and what would happen if there was any violence.  Same thing with throwing things.  All it took was the one visit and we had no more violence.  It wasn't an easy thing to do by any means but it was extremely effective.  If we had had to call again, the police would have taken her to the local ER/A&E to be evaluated for admission.
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tina72
Seashell wrote:
Thx everyone for replies. Comforting to know others out there having to go through same thing. I get food is medicine but she is completely non compliant. When I take food to her room she throws it on the floor and kicks me and throws things at me until it’s so dangerous I have to leave. I come back and same thing happens.


Get another adult on board if possible or call the police if she is violent. That is not acceptable. Maybe you will only need to TELL her that you call the police and take the cellphone in your hand...
If she throws food, replace it. If needed 5 times so have enough of it in back. Take away all things that can be thrown even from her room. If she throws stuff she will need to sleep in a room with only a bed and wardrobe (or other furniture that cannot be thrown).
Strange behaviour needs strange solutions. Think about what ever is needed to stopp that behaviour. If she was 2 you would not have accepted that. Same now.

Tina72
Keep feeding. There is light at the end of the tunnel.
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Seashell
Oh Tina72 I wish you were here to lay down the law. She is so used to getting exactly what she wants with screams and violence and threats to kill herself that its going to be hard to change behaviour let alone instigate eating. This weekend she was so angry that I found and took away laxatives from her room that she barricaded herself in her room so we can't get to her at all. When I said I'd get police she threatened to kill herself and says she has a stash of pills in her room with her. I know I should man up but I am so tired and stressed I just don't know where to start. She ate one meal today so far.
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Warrior1
He helps out with taking my kids to places when he can, but I don’t want to let them be taken by others all the time. Trying to make sure they get some of me.
Time to rest up, night all


Yes this so very hard, my other two left the house for over two weeks I missed them so much. It did however mean I could focus on my ED D 100% which was what was needed at that time. As Ronson says short term pain for long term gain. A couple of months down the line and we are a normal(ish) family again! Xx
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Torie
Seashell wrote:
Oh Tina72 I wish you were here to lay down the law. She is so used to getting exactly what she wants with screams and violence and threats to kill herself that its going to be hard to change behaviour let alone instigate eating. This weekend she was so angry that I found and took away laxatives from her room that she barricaded herself in her room so we can't get to her at all. When I said I'd get police she threatened to kill herself and says she has a stash of pills in her room with her. I know I should man up but I am so tired and stressed I just don't know where to start. She ate one meal today so far.


Oh dang, I know what you mean about wanting Tina to come and help out with laying down the law.  (I love Tina, but the person you REALLY want for that is mjkz.)  Since we can't make that happen, I suggest you really do call the police.  When your d is barricaded in and threatening to kill herself with a stash of pills she says she has, well, I think it is time to call the police.  And then remove the meds and sharps, and then make it so that she can't barricade herself in next time - either remove the lock or the door.

A threat of suicide  always requires a prompt response.  Please keep us posted. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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melstevUK
Nicstar4,


Good that she has eaten a whole meal and is maybe being more accepting again.

If she puts up resistance again, I would remind her that she either learns to eat at home or she will be made to eat in hospital.  Remind her of the consequences of not eating and gaining weight with you and it may help on future occasions.

Seashell - is your d under a treatment team?  Is she under CAMHS or adults services? Please tell us more about your circumstances. 

Believe you can and you're halfway there.
Theodore Roosevelt.
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Seashell
Thanks Torie you for your support and you are obviously right not to take any chances (which I have discussed in detail with her medical team). However, I do think that for the most part she uses these threats as a way to control me. I get "If you make me eat this food I'll kill myself and it will be your fault" kind of thing a lot. In this case she came out of her room happy as larry, ate a meal and then went out with friends. Its only 3 weeks since diagnosis so all very new to me and to her I guess.
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mjkz
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(I love Tina, but the person you REALLY want for that is mjkz.)


I vote we both go.  Seashell's daughter won't know what's coming [biggrin]

Seashell, you really do need to lay down the law because what you're living with sounds completely crazy and unsafe for all involved.  Tina had some great ideas.  My daughter too used to try the suicide card and she stopped threatening after she was carted off the ER(A&E) and evaluated every time she used it. 

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I know I should man up but I am so tired and stressed I just don't know where to start.


1.  Start by removing the lock off her bedroom door or even better the door itself. 
2.  Remove or lock up anything from the house that can be used against you or she could against herself.  All meds go into a lock box as do all sharps.  When she is out, search her room and make sure she doesn't have pills in there. 
3.  Any threats of suicide need to be taken seriously and get her evaluated.  For me, I would much rather have gone to the ER(A&E) 20 times a week and get sent home after she was evaluated than not take her just once and have her do something.
4.  Three meals and three snacks.  If she doesn't eat, then complete bed rest until the next meal or snack. If she'll do a supplement instead, then give her the supplement.  Bed rest is exactly that.  No reading, no TV, no internet, no phone, no electronics.  She lays on her bed to conserve calories.
5.  Her ability to do anything depends on eating.  If she wants to go out with friends, she has to eat before she does it.  No meals with friends because if you don't see if eaten, it wasn't eaten.
6.  No choice in attending medical appointments, etc.
7.  Keep yourself safe.  If she gets violent, call the police.  It was one of the hardest things I've ever had to do but it was the most effective.  They can really be so much help.  If she is threatening suicide, then they can either call an ambulance or transport her themselves to the nearest ER(A&E).

The sooner you set limits and get a handle on this, the sooner you'll be through this but if you don't you will be in the refeeding phase for a long time.  Not fun.  Not sure if this helps at all but just a few of the limits I set.
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Torie
mjkz wrote:
I vote we both go.  Seashell's daughter won't know what's coming [biggrin]


Count me in, too.  I'm not as tough, but I'm pretty good at removing doorknobs.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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tina72
Torie wrote:


Count me in, too.  I'm not as tough, but I'm pretty good at removing doorknobs.  xx

-Torie


Guys, you are so funny (although the case is not funny at all). I have a picture in my mind of me and mjkz and Torie being a SWAT team in your house, Seashell.

Torie is right, threatening us with suicide must have a consequence immidiately!
Check her room and remove ALL pills and everything that can be used for self harm TODAY. Don´t forget scissors (nail sets) and even paper clips (that is what my d used). If she complains about all those things dissapeared I would simply say "you announced suicide, I am in charge to keep you safe, you can get all these things back if you are not suicidal any more." I am sure she will change her mind very quick.

Doors: that was something we did forget, too, and my d one day locked herself in and we could not get in with snack and nearly had to call the police.
So remove door keys or if not possible door knobs or THE WHOLE DOOR IF NEEDED. Even in the toilet if needed. She should have NO possibility to lock herself in!

"She is so used to getting exactly what she wants with screams and violence and threats to kill herself that its going to be hard to change behaviour let alone instigate eating."
If she were 2 years old you would not tolerate that behaviour and you would know what to do. Same now. Change your parenting style, that is needed. They do not behave like young adults and so we cannot treat them as those at the moment. Don´t let ED play with you. You are the parent. You set the rules.

"I know I should man up but I am so tired and stressed I just don't know where to start."
Start with checking her room and have the house safe. Lock everything in that can be used for self harm. That is most important.
Then have a plan how to make her eat more than one meal. Get another adult to help you. Sometimes there are friends and family members who would love to help but don´t know how. Make them read Evas book and have a plan.


Tina72
Keep feeding. There is light at the end of the tunnel.
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tina72
Nicstar4,

"Weekends are hard, especially if she has been at her dads. I have decided to keep weekends more structured, and everything will be dependent on eating. Her dad is in a depressive episode at the moment which complicates."

I did not get that when I read your post.
I would suggest that she is not going for weekends to her dad until you see steady weight gain. That is a loophole for ED. And he might not have the power at the moment to fight depression AND ED. He can visit her at your home if you think that is o.k. for you.

Tina72
Keep feeding. There is light at the end of the tunnel.
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mjkz
Nicstar, I think Tina has a good suggestion.  If her father is struggling, maybe she needs to have meals with you and time with Dad in a more supportive setting like they go see a movie together or something.

Torie-all lined up for the door knob removals.  I used a hammer and then had to buy all new doors so if we can minimize the damage, I'm all over that. Tina, ready, set, go =)
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tina72
Maybe Torie could add a tutorial video "How to remove door knobs"? Seems to be difficult in different countries. Here we only need to remove 4 screws...[wink].

It is such a wondeful idea with the SWAT team, Torie. I am dreaming of a world were there would be a superheroe team that flies out to the families to help them with refeeding... think we need to stick with ATDT for the next time [frown].

Tina72
Keep feeding. There is light at the end of the tunnel.
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Nicstar4
Yep was going to talk to her dad, if no weight gain, she stay at mine until we get her on track. Even every other weekend seems to throw her off track.
I have also said we have to up the weight, if not here, then hospital, and when you come out we will still have to do it here, so you may as well do it here now, and maybe avoid hospital by putting on weight at home.
I have tightened the framework again. Thinking if we don’t get gain this week to take time off work and stop everything,
Cant take too much time off as appointments are $$$
Upside is that she just ate whole meal plan yesterday and today. Even said she liked her breakfast, but ED didn’t!
So, small wins but exhausted here.

Seashell, how are you going?
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tina72
Nicstar4 wrote:
Yep was going to talk to her dad, if no weight gain, she stay at mine until we get her on track. Even every other weekend seems to throw her off track.
I have also said we have to up the weight, if not here, then hospital, and when you come out we will still have to do it here, so you may as well do it here now, and maybe avoid hospital by putting on weight at home.
I have tightened the framework again. Thinking if we don’t get gain this week to take time off work and stop everything,
Cant take too much time off as appointments are $$$
Upside is that she just ate whole meal plan yesterday and today. Even said she liked her breakfast, but ED didn’t!
So, small wins but exhausted here.


Sounds like a good plan. Maybe you can use dad for distraction and have some time for yourself between meals.

Is there a possibility to get carers leave from work? So you still will be paid by social system?
I think you will need to do that to see constant weight gain. And for your own sanity...

Tina72
Keep feeding. There is light at the end of the tunnel.
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