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.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

PennyG
Hello everyone. Our D (15yrs) was diagnosed with AN June 1st. Her condition came on extremely rapidly. She started restricting food after March break and by the end of May she was in a very critical condition - had to be hospitalised for a month with vitals being way below normal / borderline cardiac arrest. After a whole month of refeeding at the local hospital she was discharged home on the FBT program and a month in she has not gained any weight - well in all honesty we seem to be up and down within the same range for 31 days now. We are having an extremely hard time with it all as her ED tends to be out of control over the weekends (totally bizarre  I know but Saturdays and Sundays are very hard days - refusing to get out of bed, refusing food, shouting obscenities and wanting to end her life).  She has always been a very active, athletic kid so this has really affected her. 

We we have been asked to stay calm, consistent and compassionate through this but I find our emotions are running high at the moment. We have read all sorts of books and studies etc. We don’t know what to do! 

I am am fully aware that we are only at the beginning of this long journey but if anyone has any practical advice to share as to how to keep going we would be super appreciative. 

I know we have to keep drawing the line in the sand and push harder each meal but there are days where that is simply not possible. Pick your battles kind of attitude works sometimes but we are mindful that we don’t want to give in. It is a terrible condition and we want to help her get through it ASAP - school is starting in less than a month and we fear she will not be able to go back! She finished top of her class last year! A brilliant future ahead of her and now ED has put a hold on it with potentially distorting it! i need to motivate her to keep going and feed her brain so the fog can lift but I find myself despondent at times and frustrated. 
Quote
Foodsupport_AUS
Welcome to the forum, sorry that you have had to find your way here. 

I know that it is very hard to see your way forward at this stage of the illness. It is important not to worry too much about the academics at this stage. Many children, my daughter included have had a long time out of school. They still manage to pursue those things they want, even if it is a bit delayed. More important is to focus at the problem at hand. 
Do you have any ideas as to why there are more problems at weekends?
What changes are there to her routine, what else is happening that could make things harder?
As to getting things moving, how can you make it so that not eating is not an option. Can you insist on her having her food under supervision in her room if she won't get out of bed?  Can you try increasing her intake by a small amount each day until you are seeing consistent gain?
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.
Quote
tina72
PennyG wrote:
After a whole month of refeeding at the local hospital she was discharged home on the FBT program and a month in she has not gained any weight - well in all honesty we seem to be up and down within the same range for 31 days now. We are having an extremely hard time with it all as her ED tends to be out of control over the weekends (totally bizarre  I know but Saturdays and Sundays are very hard days - refusing to get out of bed, refusing food, shouting obscenities and wanting to end her life).


Hallo and a very warm welcome from Germany although I am sorry that you need to be here.
A months without weight gain is concerning and you need to find out why that happened. In most cases there are 3 possible reasons:
1) secret exercising and burning calories (for example sit ups in the nights when you sleep)
2) purging/vomiting (are you 110% sure that this does not happen?)
3) not enough calories on meal plan

It is quite normal that weekends are harder when you are all around and ED feels fighted more often and harder. What is different on weekends there? Are you both at home? Are other family members around?
No sleep ins during refeeding. No missing breakfast. She can roll around and sleep 2 hours after that but she needs to eat. 3 meals 3 snacks. No excuses.

PennyG wrote:
We we have been asked to stay calm, consistent and compassionate through this but I find our emotions are running high at the moment. We have read all sorts of books and studies etc. We don’t know what to do!
I am am fully aware that we are only at the beginning of this long journey but if anyone has any practical advice to share as to how to keep going we would be super appreciative. 


Calm, consistent and compassionate is half way through but you need time to learn that. We all were not able to do that from day one. It takes time. To keep going this helps:
1) have a routine - all days are the same
2) get some distance for you at least once a day - even if it is only a 10 minutes walk around the block
3) try to seperate your d and the ED - that helps you to be able to fight ED and say NO and feel compassionate for your d at the same time

PennyG wrote:
I know we have to keep drawing the line in the sand and push harder each meal but there are days where that is simply not possible. Pick your battles kind of attitude works sometimes but we are mindful that we don’t want to give in. It is a terrible condition and we want to help her get through it ASAP - school is starting in less than a month and we fear she will not be able to go back! She finished top of her class last year! A brilliant future ahead of her and now ED has put a hold on it with potentially distorting it! i need to motivate her to keep going and feed her brain so the fog can lift but I find myself despondent at times and frustrated. 


Forget all worries about school. She might not be able to return there in a months - so what! School is not important at the moment. Her health is important and nothing else. Most ED kids are highly intelligent or even gifted. My d was also top of her class. Then she went IP and was not at school for 4 months and when she came back it was only on half schedule for the rest of the year. We got her back to a good weight, her brain recovery started and she graduated top of her year in the following year without any problems.
She will get all the lost stuff very easy when she is healthy again and when her brain works normal again. At the moment school is lost time.

You cannot do much to motivate her keep going. You can distract her and think about incentives for eaten meals, finished meal plans etc. The "fog" can only lift with food and good nutrition.

It is normal to feel helpless and frustrated but it will get better the more you are used to the routine and the more you find out what works and what not. Come around with all youe one million questions, we are here to support you - we are open 24/7.
Keep feeding. There is light at the end of the tunnel.
Quote
sk8r31
Welcome PennyG, though sorry you have a need to be here.  We also had a d who needed to be hospitalized for medical stabilization after a rapid weight loss.  It is an unnerving time after diagnosis, and frightening as well.  Great that you have done some reading; knowledge truly is power.
When Your Teen Has an Eating Disorder by Lauren Muhlheim is the book I wish had been around when we were at the stage you are at now.  Lots of very good, practical advice on how to move forward.
As has been mentioned, school can wait, the most important job at present is getting your d nutritionally rehabilitated as quickly as possible.  Parents on the forum and the book I mentioned, along with Eva Musby's book and others can help you find the best way forward for your family.
Sending warm support to you!
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
Quote
PennyG
Thank you everyone. 

I think the weekends might be harder because the whole family is around. We allow for the extra half hour sleep in. 

She is the master of procrastination and excuses - I find it hard to address her failure of keeping to the set schedule. 

She gained 900gr the first week she was at home but since we started having our regular meetings with  our FBT counsellor and weight is one of the primary focus she is up and down within the same range. We are concerned snd we keep trying to make her eat a bit bigger portions or caloric denser snacks etc. 

She is secretly exercising (we know that) but we have addressed it and we have noticed it is getting less and less of an issue.

We have tried following the meal plan that the dietician gave us and it seemed to work but I strongly believe that it is the change in her attitude at the weekends that is “killing” progress. She tries really hard all week and then it’s as if a switch is flipped and resistance is off the charts! 

School is obviously not our primary focus but we like to use it as a form of motivation for her! 

Thank you all for your responses and your tips. It is such a tough time for our family. But we are encouraged by great success stories.

 
Quote
scaredmom

We too had issues on weekends. 

I and her father and siblings were home and not at work no school and the day was less structured. We had more fighting and stress on the weekends. No school, no work and so no routine. We found that doing things outside the house, helpful. Walking in the mall, going to the hardware stores helped a bit. Can you do different things on the weekends to help break up the monotony. It does get better. 
Sending my best,

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)
Quote
teecee
A really warm welcome PennyG. 
I can only say amazing things about Eva MUSBYs book and YouTube videos which helped us massively in refeeding. We gained to WR plus some more within 4 months. Coupled with this we did LSUYE (life stops until you eat) - practically it’s tough on the family but we chose to hit it hard by supervising 24/7 including sleeping with her to stop exercise and sooth her when the suicidal thoughts were strong at night. A weighted blanket is a good idea. They go through stages of being freezing then super hot due to metabolism being out of sync so it was helpful to be around for cuddles at night etc. 
Obviously with LSUYE this kind of means your life also stops...the only time we went out was to the supermarket constantly for food and very short gentle walks. 
My D (like many ED sufferers) is the typical A* student, high performance sports etc. She missed the crucial 5 months before GCSEs and still came away with 7,8 and 9s. 
Please do not worry about school, although I know you will! When the brain starts to repair they will catch up. My D is now doing A levels and getting A/A*s in her first year. We were prepared to miss the GCSE year and only supported her because she was so distraught about redoing the year - we told her we would support if she could cope with not getting the results she wanted. We also put great emphasis on the fact that it is not necessary to ‘do life’ in a certain order. She will get to where she wants to be in life without doing it the same way everyone else does if she wants it enough. This took the pressure of her (being a perfectionist and all 😊). 
Quote
Ellesmum
Hi Penny, welcome. 

From what you say she’s going to need to take a break from school for her recovery,  my own d was off from Easter 2018 and began a phased return just before Christmas going part time with lots of days off, I’m not sure whether she’ll be full time after this summer break yet. A very bright girl too who seems to be keeping up with the work well.  So I’d try to prepare yourself for an extended break.

i also sleep with mine for her comfort and safety and we tend to talk at night and make plans, keeping occupied has always been important even if it was just a stroll to a cafe or doing easy mindless chores, I tried to pick things I needed only her to do (organising is her thing)  weighted blanket as suggested helped a great deal and we are prescribed a antihistamine for a sleep aid (available OTC) this also has anti anxiety properties.  Teenagers well or sick really need sleep so perhaps try giving her breakfast (supervised) in bed. Does she still have friends? Eating can sometimes be easier with company but of course all kids are different, it’s worth trying different approaches and swapping them out as they become more or less effective. My d is doing pretty well now, life is 1000 x better than last year, sometimes I was her best friend, sometimes the house dictatorship, other times ‘mummy’ by which I mean I learned to read what she needed at different times (not always getting it right) 

it might help to create a structure around the weekend as routine can be comforting, like visit granny, walk the dog, lunch, cinema every Saturday afternoon whatever works, they often become scared of spontaneous things and need to know where they stand, even deciding a different coffee shop at the last moment causes great angst at the start because they prepare themselves for one thing and the change f plan is too much. 



Ellesmum
Quote
tina72
PennyG wrote:

She is the master of procrastination and excuses - I find it hard to address her failure of keeping to the set schedule.  


They all are! Here are parents that were told that a yoghurt cannot be finished because the bottom tastes different...🙂
If she lives at home YOU can set the schedule. We had same schedule at weekends then within the week and that made it easier to get the food in.

PennyG wrote:
She gained 900gr the first week she was at home but since we started having our regular meetings with  our FBT counsellor and weight is one of the primary focus she is up and down within the same range. We are concerned snd we keep trying to make her eat a bit bigger portions or caloric denser snacks etc.  


The first weight gain is normally water. Ask her FBT counsellor to NOT focus on weight and do blind weighing for some time X. To focus on weight only is one of the big mistakes they normally do. The FBT counsellor should help YOU to know what to feed her and how to distract her. See him/her alone if needed.
We did open weighing first because that was what they did in IP here and my d also said she MUST know her weight and she cannot live without knowing that. Consequence was that she fought every 200 g she gained and did EVERYTHING to lose them in the next week again and we did not get that last missing 2-3 kg on her no matter how much we tried. I then convinced her to give blind weighing a try for a months. (It took my 4 months to get there...) She did it once and when she came out she said "I have no idea why I did not try that, it is somuch easier NOT to know that, I will never do open weighing again." I could have killed her 🙂. Since then (almost 2 years now) she was weighed blind, she never asked for her weight or gain or intake any more, she is not even interested in her weight any more.
No normal healthy person is focused on weight and gain and intake. That is the target. All focus on weight and gain and intake only feeds ED in my eyes.

PennyG wrote:
She is secretly exercising (we know that) but we have addressed it and we have noticed it is getting less and less of an issue.  


Secret exercising needs to stop. She will have found other ways to do it and she might not be able to stop it herself. Think about what you can do to help her to stop it. Sleep with her, hang off doors if needed. You need to make the ED behaviour impossible to stop it.

PennyG wrote:
We have tried following the meal plan that the dietician gave us and it seemed to work but I strongly believe that it is the change in her attitude at the weekends that is “killing” progress. She tries really hard all week and then it’s as if a switch is flipped and resistance is off the charts!  


I think she is adding in her mind what she ate the whole week and feels guilty for that at the weekends. Therefor it is important to not allow any change in schedule and rules at the weekend. Here it was same with the evenings. The days were o.k. and she ate all we served and in the evenings ED freaked out.

PennyG wrote:
School is obviously not our primary focus but we like to use it as a form of motivation for her! 


Then use it as motivation but make sure that snack and lunch is supervised there or take her home for lunch. We had these rules: no school without proper breakfast - if she refused to finish her breakfast she could not go to school. Snack (Pausenbrot) was supervised by her teacher (who is a former ED patient and knows ALL the tricks, without her I would not have allowed to go back to school). Lunch was not possible to supervise at school so we took her home and brought her back after lunch (whenever she has finished).

Your d has a legal right to be allowed extras in school due to a chronical disease. Please ask for that.
Keep feeding. There is light at the end of the tunnel.
Quote
Hendrixt
Hi Penny,

Before she goes to school I strongly recommend you check the below post on Eva Musby’s website. 

https://anorexiafamily.com/legal-school-plan-eating-disorder/
Quote
sandie
Hi, i found i needed to make a decision internally and be supremely confident that each meal/snack would be eaten no matter how long it took. It took months here to establish a routine and there were many days when breakfast was not eaten until afternoon. It was helpful here to give message that "i will never give up on you" because I love you. If a meal or snack was missed despite this, we found important to start afresh with next meal/snack and not dwell on what as been missed.

it is really really hard I know. Sending you a hug.
Quote
PennyG
Thank you everyone, much appreciate all your replies and advice. Thank you for taking the time to reply and help out. 
Hope your troubles are over and your loved ones are fully recovered - our journey is going to be a very long and challenging one. Her internal bully is far too strong. 
Quote
tina72
I am quite sure that you can be stronger than that bully. We have a say here in Germany, we do not negotiate with terrorists. ED is a terrorist. You can help her to fight him.
Keep feeding. There is light at the end of the tunnel.
Quote

        

WTadmin