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

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sandie
Hi, I would be grateful for advice to help me manage Ds expectations that she will finish meal- plan soon. She has progressed slowly from very low BMI refeeding at home and is now about 6th centile..probably needs another 3 or 4 kg for individual healthy weight as has always been slight. Currently on about 2300 to 2400 cals and largely safe foods, which I am challenging slowly. Very difficult to increase volume, other than very small steps now. We needed to cut out all exercise/ walking to enable her to progress. Lots of ED thoughts and behaviour still but i see improvements in mood, humour and fewer outbursts.

She expects/ has decided that in a few weeks she will be finished with meal-plan and just eat what she wants and not have any snacks and do whatever exercise she wants. Being fearful of being fat does not seem to be big issue for her- seems to be more concerned with the restrictions of meal-plan and not being allowed to exercise. Cahms have explained transition to her but she seems to ignore this. It is really difficult to discuss with her as she refuses food if I seem to not "go along with" the notion that she is almost finished which is dangerous! I have been taking a one day at a time approach and what seems to work is to say we will have to see what paed says. But I am worried that she has no concept of the amount of food she will have to eat going forward to balance input/output, not to mind the work we will need to do to get her to eat normally. I don't know if I have expressed my questions/ concerns well but I would be very interested in any tips/advice as I expect others will have had to manage similar issues. Thanks
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Foodsupport_AUS
Her hope of coming off her meal plan is of course her ticket to being unwell again. I would simply say it is normal for someone with AN to require to eat their meal plan for several years after weight recovery and it is what is needed to get better - you have heard this from a reliable source - us. There is also quite a lot of literature to support this. After that no discussion, she has been told of any transitions in terms of her food choices, she can ignore this info but you of course can ignore here ED chatter. It may well be that she needs more than that 4 kg - she is growing and she may not have been at a truly healthy weight for her. 
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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Ellesmum
I’ve told CAMHs they are not to talk at all about cutting back calories, exercise and anything to do with maintenance.  I’ve told them that I know my daughter best, I clearly see the effects of a calorie dip and that I believe they pull back too quickly. They don’t argue with me, it’s all said with respect on both sides.

With d I’ve said mildly that she will need to eat well for a long time as she grows into womanhood and don’t really  drawn into discussion, she has though told me she knows her mood is happier when she eats so there’s some awareness coming.  If you give an idea of what she currently eats we might be able to help bump it up.
Ellesmum
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sandie
Thanks. I agree she may need more than 4 kg. In fact I am worried that she may get her period back too soon.
i find it very difficult to ignore ED chatter as this leads to nasty outbursts. If I mention eating difficulty, she goes ballistic. From her perspective, she just had drive to become healthy and took it too far.
I basically think that we are about to go through a hellish time with outbursts again. I think I saw a post from scaredmom somewhere else saying don't be afraid of ED- stand up to it, and i will do it but quite honestly I am quaking.
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Ellesmum
sandie wrote:
Thanks. I agree she may need more than 4 kg. In fact I am worried that she may get her period back too soon.
i find it very difficult to ignore ED chatter as this leads to nasty outbursts. If I mention eating difficulty, she goes ballistic. From her perspective, she just had drive to become healthy and took it too far.
I basically think that we are about to go through a hellish time with outbursts again. I think I saw a post from scaredmom somewhere else saying don't be afraid of ED- stand up to it, and i will do it but quite honestly I am quaking.


its awful, takes a great deal of courage but it’s so necessary.  I used to wake up, tell myself ‘ok, deep breath’ and try to crack on. It did get easier, truly it did but it’s horrible at the time.  Quicker we gather our strength and the quicker we get those fats in the quicker the improvement so hold out for that. 
Ellesmum
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scaredmom
sandie wrote:
Thanks. I agree she may need more than 4 kg. In fact I am worried that she may get her period back too soon.
i find it very difficult to ignore ED chatter as this leads to nasty outbursts. If I mention eating difficulty, she goes ballistic. From her perspective, she just had drive to become healthy and took it too far.
I basically think that we are about to go through a hellish time with outbursts again. I think I saw a post from scaredmom somewhere else saying don't be afraid of ED- stand up to it, and i will do it but quite honestly I am quaking.


hi there.
why are you afraid of her period coming back too soon? 
I was scared too to confront and it was the best thing to do. I say that in retrospect for sure. I had to tough mom, and had to ensure she got well and ate all that I deemed necessary.

I found with my d I had to literally walk away from arguments and dad had to sit with her. She would not yell at dad as much. And when she ate we had to be quiet ie silent and not look at her at all. If she refused or threw food I plated again and again and if it all ran out I had leftovers to dish out.
When d would try her ED logic i would say “ I am not talking to ED” and walked away she ran after me at times and was aggressive that is where her father was most useful. He distracted her video games, or just there being the ‘wall’
You got this and you have us and we have been there
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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scaredmom
Sandie some parents needed meds to take before confronting ED, or they had a mantra or did visualization exercises by standing in front  of the mirror and truly flexing their ED muscles and gave themselves a pep talk before feeding. It is a gruelling time for us. So many things we need to change about how we approach our kids like we don’t even know who they are anymore and worried about what they will do. They are like strangers and we have to learn not to tip toe around them. 
Sending you a super hero shield!
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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debra18
My daughter also thought once she reached a good weight and felt good she wouldn't need to follow a schedule anymore and I wouldn't have to watch her which would have meant her eating far too little. She kept writing notes that I should trust her and I told her she should trust me. 6 months later with a good weight she is still eating the same amount of calories and general meal plan and I am still supervising all meals at home. I don't see this changing for a long time. 
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tina72
sandie wrote:

She expects/ has decided that in a few weeks she will be finished with meal-plan and just eat what she wants and not have any snacks and do whatever exercise she wants.


To be honest, I would simply tell her that this is not going to happen. This would be a ticket for a relapse.
It is not possible to eat what she wants and to skip snacks at that state. My d is 2 years after IP now and still needs to eat 3 meals 2 snacks or ED would come back immediately. Intuitive eating takes a lot of time (in some cases it does not happen at all again) and they need to eat a lot for a long time (many until they are grown out in their mid 20s) so recovery from an ED is a long term thing and she is really early days so the relapse risk is very high.
Most relapses happen because of starting phase 2 too early and giving back control too early.

I do not remember how old she is at the moment but unless she is an adult it is not her decision about her health. You decide that.
Eating without plan is something for a later state in recovery. She is not there. And 6th percentile is probably no healthy weight at all. You will need to feed her until she shows a constant change in state and has no ideas to skip meals or snacks but can snack additionally for example.

"In fact I am worried that she may get her period back too soon. "
Why? Did any stupid therapist tell her she does not need to gain more when periods are back (that happened here)?

And is there any fear food left you need to work on? Is she already eating all that she ate before AN moved in?
If that is the case you need to work on that first and have a great argument. No getting off meal plan before fear food list is not completed!
Keep feeding. There is light at the end of the tunnel.
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Ellesmum
Yes, I wondered what you meant about her period, my daughter has only had a couple so far but accepts that the body has to work ‘really hard’ at this time so needs to eat even more.  If you can find the words to sell that concept it really helps,  it’s a great time to lie on the couch eating chocolate. 

I can’t see a time when my d will be able to cut back much while under my care, I’m terrified of relapse so completely ignore CAMHs talk of phases, stages and timelines and have told them to not bring it into our sessions.  
Ellesmum
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sandie
Hi, thank you all very much for your advice. Lots there! Yes, paediatrician has said that we will know she is healthy weight when she gets her period back. No- one has made a link between healthy weight and mental state/ ED behaviours. Is that incorrect?
I had understood that brain recovery often took 6 months after reaching healthy weight.

lots of important advice about explaining that she will need to continue on meal-plan. She trusts the paediatrician and I think I need to talk to paed before next appt to get her to explain about relapse and need to continue on meal plan AND need to increase intake as her progress is again too slow. At the moment, she is choosing to restrict normal teenage activities in preference to increasing intake.
And yes Tina, she has millions of fear-foods which i am addressing slowly with her but her willingness to eat more variety is definitely improving itself with weight gain.

we have cahms appt tomorrow but I find cahms don't really want to discuss meal-plan- more talk about emotions etc. Which of course is important but I think we would make more progress if a professional was prepared to discuss her intake every week and "order" some changes, as she always obeys teachers etc.I will need to get cahms to be clear about needing to maintain intake as well.

i hear what is being said about confronting ED and not being on tiptoes. I am definitely on tiptoes but i don't think we would have progressed this far at home with confrontation. Maybe now my D is at a safer weight, i need to shift my approach to gentle confrontation. Really difficult. My D dos not acknowledge she has ED and does not allow me to imply she is ill or has eating difficulty. I find it very challenging to find the right words to confront her difficulties. I have been trying to hold off until she is at healthier weight and hoping that ED would melt away.

thanks for sharing Debra about trust. I need to go back to claiming this position again.

thanks again all. Great to have your support. I have work to do! Xxx
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toothfairy
Hi Sandie
here is a video on “state not weight”
Food is the medicine. Recovery is possible.
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toothfairy
Generally speaking, it takes a long time to recover from anorexia.
the average time is 5-7 years with best cases often 2-3 years.
Here is a good article on brain recovery -
. Brain matter actually shrinks during AN and takes time to recover. Six months after full weight restoration the brain often is not yet structurally back to normal. Yet with enough time at a healthy weight, the brain seems to fully recover. The research suggests that by three years after achieving weight recovery, most individuals’ brains will likely appear normal physically.”
https://www.verywellmind.com/brain-starvation-and-recovery-in-anorexia-nervosa-1138303
Food is the medicine. Recovery is possible.
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toothfairy
I will bump up “ stages and timelines” thread for you.
it is well worth reading through including the links.
Best wishes
Food is the medicine. Recovery is possible.
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sandie
Thanks toothfairy for bumping excellent thread. So much in it. Got to get my h to read. Also your messages above. Have already watched video a couple of times. Xxx
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toothfairy
Hi Sandie,
Here is one of  my absolute favourites.
I wish I had seen this at the start of my journey it would have explained so much to me then!
It is an hour long but an hour very well spent.
Best wishes.
Food is the medicine. Recovery is possible.
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sandie
Thanks. I will find that hour today.
we seem to be starting new phase of escalation in ED. She won't eat for me since yesterday, as I have not been going along with her expectation that she is almost finished. Aggressive outbursts mixed with bursts of crying. Just awful (but not as intense as a month ago).
hopefully we will manage to turn that round this weekend. Did not make school today altho she desperately wanted to go because she wouldn't have breakfast. And refused to go to cahms appt.the afternoon. I have spoken to cahms to plan next steps so I feel reasonably well- supported. Back- up plan to go to a and e if hunger strike continues.......
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scaredmom
Sandie I am not sure I know her age? 
I will respond in more detail later. Just wondering...
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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tina72
sandie wrote:
Thanks. I will find that hour today.
we seem to be starting new phase of escalation in ED. She won't eat for me since yesterday, as I have not been going along with her expectation that she is almost finished. Aggressive outbursts mixed with bursts of crying. Just awful (but not as intense as a month ago).
H managed to get her to eat last night but very difficult as he is at work. He came home 2pm today and got her to have breakfast. She is basically on hunger strike directed at me but hopefully we will manage to turn that round this weekend. Did not make school today altho she desperately wanted to go because she wouldn't have breakfast. And refused to go to cahms appt.the afternoon. I have spoken to cahms to plan next steps so I feel reasonably well- supported. Back- up plan to go to a and e if hunger strike continues.......


Here it helped to change between hubby and me in these days. Some days she would not eat with me but did eat with him, some days other way round. It was a big sign for her that we work as a team and she cannot get rid of us both 🙂.
When she refuses to go to appointments make a new one for the next possible day and make clear that this is not negotiable. It is like a GP appointment or a dentist.
Great that you stayed strict with no school without breakfast. Health and meals come first. School is not top of the list at the moment.
Keep feeding. There is light at the end of the tunnel.
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sandie
NJ Thanks. Scaredmom, she was recently 15. She's put on 8 kg since diagnosis in November refeeding at home.
Yes I think Tina, that approach of H stepping in to support meals is our best chance this weekend ( unfortunately a 3 day bank holiday). He is much softer with her and I think he will need to start gently challenging as well (but not for the moment).
School is definitely a motivator which we can use. She has been distracted from ED with exams over last month and now they are over, I was expecting a backlash- mix of exhaustion from overstudy as well as more space for ED.
Totally agree re cahms appt. She will have one next week and important mtg with paediatrician the following week. I think she will have to hear some difficult messages about her illness and need for ongoing treatment, and I am concerned her weight may slip as a result but it feels like something we need to go through now. Need to make sure H and I united on approach. Thanks for listening. X
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tina72
sandie wrote:
Yes, paediatrician has said that we will know she is healthy weight when she gets her period back but that this can take 6 months after she reaches her healthy weight, so we need to look at her bloods as well.


Talk to the paed before the next appointment alone and ask him to set no target and time lines. He should know that some girls get their periods back very early and some do not lose them at all although very sick. Here they said the same in stupid IP and my d thought she was recovered on BMI 16,5 as she got her periods back then...it was off then again and came back at BMI 21 more than 10 months later.
Keep feeding. There is light at the end of the tunnel.
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sandie
Thanks for tip. That's exactly what I am afraid about re too early period as she started to have some vag discharge now. I will write script for paed!!!!!
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tina72
Send him that:
"Even though amenorrhea (absence of a menstrual cycle for three consecutive months in a female of childbearing age) has been removed from the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) as a diagnostic criterion for anorexia nervosa–and the resumption of menses is not the sole criterion for recovery–it remains a significant marker of the illness for many."
https://www.verywellmind.com/eating-disorders-periods-and-bone-health-3994438

"The second major change to the diagnosis of anorexia nervosa is that teen girls and women no longer have to have lost their periods (a condition technically called amenorrhea) in order to be diagnosed with the anorexia nervosa. In the prior edition of the DSM, women had to have skipped three or more periods to be diagnosed."
https://www.verywellmind.com/diagnostic-changes-in-the-dsm-v-1138301

No periods is no longer a diagnose criteria for AN. And to have one is no criteria for recovery.
Keep feeding. There is light at the end of the tunnel.
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sandie
Useful thanks Tina. I can understand that periods are a useful sign of body starting to recover from starvation and using some energy to restore ovarian function but starving women can menstruate and I think it does not make sense to rely on resumption of period to "diagnose" recovery. I think clinicians need to be very careful about what they say about healthy weight to patients - esp a teenager with a starved brain/ anorexia. Simplistic remarks can cause havoc unintentionally.
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tina72
Clinics and paediatricians should know that a 15 year old should have NO target weight at all. You are totally right, every number communicated to them can cause a big confict. To tell them no target and no numbers worked best here.
In my 2 year experience with AN biggest mistakes of "professionals" here were:
1) set target weight too low
2) tell them that too low target weight
3) start phase 2 and giving back control too early
Keep feeding. There is light at the end of the tunnel.
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