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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Adlih64
Hello,
My daughter returned home from hospital 9 weeks ago.  Overall, things are going very well - more than I could’ve hoped for a few weeks ago.  Medication seems to be effective and as a result self harm and violence has stopped as well as increasing appetite.  We also have had a change of psychiatrist and now have a very supportive team which has been great.  Her mood is improved although she needs constant reassurance throughout the day. Over the past two months her weight has been quite erratic in the weekly weighings.  For the first 4/5 we struggled to maintain and make minimal gains.  Whilst struggling with increased intake she lost 1.3kgs three weeks ago, we managed to gain 0.4 back the following week by not allowing any outdoors activity.  The next week she really began to make some progress and was eating fear foods such as ice cream and gained 1.3kgs.  Although this distressed her we kept going with the same foods but allowed a short dog walk every other day and she lost 0.3kgs.  This was frustrating but at the same time her thinking appeared to improve and last week her hunger signals seemed to come back with a vengeance.  She has been eating out with her meal plan and gained 2.9kgs yesterday!  She was upset but has dealt with it relatively well and continues to eat.  She seems to have developed a really sweet tooth and has been eating large volumes of high calories foods such as cakes, milkshakes, sweets etc both as part of snacks and extras.  She is feeling hungry most of the day - she says sometimes physical and at other ‘mentally’.  However, she is terrified that this is becoming out of control and that it will lead to binge eating which she won’t be able to stop.  She is very upset at both feeling so hungry and the guilt feelings afterwards.  I have just encouraged all cravings.   The dietician has told her it is normal at this stage for her body to crave sugar and high calorie foods to help recover and it will ease off when her body doesn’t need as much.  She has also watched Tabitha Farrar podcasts on mental hunger which have helped with reassurance.  Does anyone have any experience of this phase of extreme hunger that they could share?
Many thanks
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Torie
Hello, I am inclined to view this extreme hunger as a positive development.   Does she stay with you for at least an hour after each meal / snack (in case she develops an urge to purge)?  I was really glad the good folks here suggested that to me because we do not not not want to have to deal with purging.

One thing you may wish to try is making sure each meal / snack includes a good mix of carbs, protein and fats.   

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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teecee
This is good news and should not be discouraged. Tabitha’s videos are great and make so much sense. Just because sufferers appear to ‘binge’ in refeeding does not mean that they will develop a binge eating disorder....I just want to reassure you about that. Let her do what her body needs to do to feed herself. When it slows down (and it will) teach her a good balanced diet, as Torie says, including all food groups. Keep going 👍🏻💕
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Adlih64

Hi Torie,
I am looking at it positively and feeling hopeful for the first time in months.  She does stay with me afterwards.  Her anxiety is still very high and to be honest she is at my back pretty much 24/7 looking for for reassurance or asking me to do something with her.   The thought of purging has crossed my mind as it really has been a lot she has put away over the past 5 days but I am pretty sure it’s not happening just now.  I was just wondering if people have found this as part of recovery to have a period where they are so hungry. Thanks.

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teecee
Yes absolutely this happened here...it’s normal. 😊
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Adlih64
Thanks Teecee that’s good to know and reassuring. She is beating herself up thinking it’s so ridiculous.
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teecee
Take a look at the Minnesota Starvation Experiment if you haven’t already...it makes sense when we see our kids behaviour...normal reaction to starvation/restriction. 
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Foodsupport_AUS
This is definitely a positive. It means she is feeling her own body's needs and responding to them. Of course she feels guilt and self doubt - her eating disorder is not going to let her get off without giving her a hard time. I agree with the others to be on the look out for compensatory behaviours - this is what her ED will want. I would also let her know that it is normal to be anxious and finding things really stressful. Rather than just reassuring her it could be a good time to look at giving her some tools for when she feels this way - be this square breathing, mindfulness, squeeze toys, self distraction techniques, learning to sit with the feelings etc.. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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MKR
Torie wrote:
One thing you may wish to try is making sure each meal / snack includes a good mix of carbs, protein and fats.


I agree. Also include fibre, like vegetables. I find lettuce and cucumbers, when eaten with meals, keep me full and prevent hunger spikes, without making one bloated.

I would stick to the meal and snack times, to steady the metabolism. I would also use distraction from food thoughts.

Good on you to observe and keep track of developments! I am sure you will steer this boat home 😀.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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melstevUK
Hi Adlih64,
Yes it is a good sign when hunger kicks in.  While she will be anxious, try and reassure her that this is normal, and tell her rather than view it as overeating,  encourage her to see it as being able to enjoy food again and this is the body s way of compensating after a period of starvation.
What tends to happen now is that she will overshoot her weight and will be a bit heavier than what her 'set' weight will be, and that process could take a year or more. 
You need to help her tolerate the distress that she will feel as her body changes 
On top of that she will be continuing to grow. The important thing is not to let her slam on the brakes and start restricting again because she may well want to do that. 
Just nudge her calmly along the recovery path and keep reassuring her when she has fears and doubts about it all. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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formygirl
I am right there with you. My D19 has been struggling for 6 years. After a second stay in res and hating the online PHP, she decided to follow Tabitha Farrar. She is gaining steadily, eating a lot of chocolate, cookies, chips etc. This method tells her to eat what she wants whenever she wants and anything else is restricting so I have not tried to balance her meals or limit her to snacks and meals. She is definitely experiencing extreme hunger. Unfortunately, I cannot give guidance, since we are where you are, but you are not alone! It is so hard!
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Adlih64
Hi Formygirl, I can’t imagine how you’ve managed over six years well done to you.  We’re still going strong with extreme hunger and she is continuing to eat but really struggling with the emotional battle of this.  She reached 100% wfh last week and immediately wanted a ‘maintenance plan’ to ensure she wouldn’t gain anymore. However, its still 14lbs lighter than when she started, no periods for a year, hair still falling out and AN thoughts still apparent and so was told that more weight is required although agreed we can move to phase 2.  She was furious and has tried to restrict over the past week but the hunger seems to be too strong.  Her mental state overall is better but she is distressed at being ‘fat’ and has being voicing suicidal thoughts again. We had first episode of physical violence in several weeks as the AN tried to push back.  However, it seems to have been isolated but did take me back to when it was occurring daily and makes me appreciate how far we’ve come.  Weight seems to be mainly gathering around her stomach.  We have a good ED dietician and she is encouraging her to follow all physical and mental hunger signs and says that is is a normal reaction to starvation and that it will settle down once the body has managed full recovery. She is very afraid of gaining excess weight or developing a binge disorder but dietician has assured that this isn’t what’s happening and so we too are just going with it. She has been able to follow this with lots of reassurance - same conversation repeatedly throughout the day! Days are still tough but a million miles away from where we were 2-3 months ago.  I sincerely hope that this is the right thing to do and wish you and your daughter all the very best. 
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MKR

Hi @Adlih64,

Adlih64 wrote:
However, it seems to have been isolated but did take me back to when it was occurring daily and makes me appreciate how far we’ve come.
----
Days are still tough but a million miles away from where we were 2-3 months ago.


I like your last post in that it sees all the struggle from a very positive angle! Well done, you have indeed become very strong and can drive the ED away.

Weight seems to be mainly gathering around her stomach. 

The body is currently focusing on protecting the vital organs, so it's a good sign. The stomach area is also a current "distribution centre" until the body decides where energy is needed most. You can reassure your daughter that this is only temporary but that it has to happen. I had come across this in Eva Musby's book and was able to reassure my daughter, preventing a lot of drama.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Adlih64
Thank you MKR, I have been speaking to her along the lines of her organs being protected but hadn’t heard of it being described as a distribution centre.  I will show my daughter that part of Eva’s book to offer reassurance.
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melstevUK
Hi Adlih64,

"She reached 100% wfh last week and immediately wanted a ‘maintenance plan’ to ensure she wouldn’t gain anymore. However, its still 14lbs lighter than when she started,"

I have been discussing this issue behind the scenes with the other Moderators just this week.  I don't know why the UK are now using this new measure of a 'weight for height' ratio instead of BMI.  It is not making sense to me.

The team are saying that your d is at 100% weight for height - which indicates that this should be a recovery weight - and yet you are saying that she weighs 14 pounds less than when she became ill.  To me this is utterly nonsensical!  Particularly if patients hear that phrase 100% they understand that there is no need for any more weight to go on.  I simply cannot understand what clinicians are assessing apart from comparing patients to an average, which seems a bit of a dodgy average at that!  I would ask the team why they are no longer using BMI as a guideline - it would help us if you can find that out because this change only seems to have occurred over the last couple of years, if that, and there must be a reason for it.  But it is certainly not obvious to me.

I would also discuss with the team that hearing '100%' as a phrase means that your d will naturally start to freak out at the idea of going beyond that.

This approach is not making sense to me at all.  I hope you can get past this latest obstacle, particularly as you had been doing quite well until now.  But at least it sounds as if you are managing to keep going and that your d is accepting the reassurance. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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Adlih64
Hi MelstevUK,
My husband and I were also discussing this over the past week and agree that the usage of 100% creates a barrier to additional weight gain.  My D was terrified of reaching this point and even more so of passing it.  In the FBT therapists favour however, she has been clear from the beginning that it is a minimum requirement to be evaluated once reached.  She recognises that AN thoughts are still strong just now and more is required.  My D sees it differently - feels ‘tricked’ as therapist told her last week that almost all patients need to surpass this and now believes that there was no discussion to be had as she knew all along that more weight would be added.  I feel that with the BMI measurement it could’ve been explained as the lower end of a healthy BMI range but with room to increase whilst staying in the ‘healthy’ range.  Therapist agreed that it is a very common reaction to reaching 100% so it does seem to be a detrimental phrase.  From what I can gather, NHS stopped using BMI for under 18s due to them continuing to grow and develop - not that this makes much more sense to me.  I can ask for further information next week if you thinking will be helpful.  
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melstevUK
Hi Adlih64,

If you could ask that would be brilliant. I really like to keep up with all changes in ed treatment and protocols to try and keep abreast of what is happening. 
I certainly don't understand the calculations involved with the weight for height ratio but I am assuming that the use of 100 per cent means that the patient has reached the average height and weight for his or her age. Again, this means nothing without there being an idea of where the patient was at the outset. They should be consulting more with the parents about what they think would be an appropriate recovery weight. The parents night not know but might have a better idea than what the clinicians come up with. 
But using 100 per cent as a term is a recipe for disaster, it seems to me, if more weight gain is required. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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Adlih64
Hi 
Just as a follow up, I have asked about the wfh rationale.  I spoke about it with the CIIT worker first who said that she has an issue with it having found it a barrier with other patients.  FBT therapist said today that it is used as a measure in children opposed to BMI to take account of continuing growth and other fluctuations.  She was keen though to think about how it could be better addressed to other young people starting out though.  My Ds weight has continued to increase and she is now at 112% which takes her a few pounds over starting weight and I think this is more appropriate for her.  She is very upset believing that she was overweight to begin with hence the want to diet.  Mood has been very low over the past few weeks and we are seeing signs of self harm and suicidal thoughts which had all but disappeared for a while.  Her appetite however has not been affected - just the guilt that comes afterwards and despite weight today has asked to go to Costco this afternoon for sponge cakes!  She has been offered a referral to CBT (E) to manage her feelings.  Psychiatrist is now keen to start altering meds.  I do trust her judgement but suppose am a bit worried as I have no doubt the olanzapine was a big factor here and the AN thoughts still appear strong despite increased appetite so just hoping that this will also be a positive step and we can keep going. 
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