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

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hope21
I’m a lurker and read but don’t often post. I’ve learnt so much from the good people on this site, I thank each and everyone who posts and respond.

Brief overview: d diagnosed April 2016 age 12, IP for five weeks, low heart rate, Sectioned and NG fed. Slowly clawed weight. Lowest 33kg height 157.
Today height 161 cm (5 ft 3) weight 64 kg (about 10 stone), discharged from tier 4 CAMHS August 2017. Tier 3 for further year. Year one struggled to gain weight. But around a 0.5 gain some weeks less and around the 49 kg for months and months. Beginning of the year managed to push past 50 kg and now 60
Plus. Hospital view was she was WR at around 47/48 kg. But mood and ED behaviours were bad.
Missed the end of P7 due to bed rest for low heart rate, missed the start of S1 due to hospitalisation.

Through initial stages friends and school were a big push for recovery. Once bAck at school further supervised lunches.

This last year, eats what is given. Still essentially on a meal plan ie three meals and three snacks. Doesn’t eat intuitively and if had something deemed bigger would reduce snack or a pudding. If our for lunch, will always get sushi. Has eaten at friends houses but they do pizza and gb and we agree how
Many pieces of each before hand.

School has been an ongoing issue, high anxiety, sore stomachs and feeling sick.
We have had appointments @ CAMHs for past year but consist of how are you feeling? Good. How’s your anxiety? Good? How are you managing? Good. Despite what I say.

We now have a formal letter saying D had recovered well from her ED. Really??
I’ve been told this week how she hates butter and I’m making her eat if against her will. Several
Meals have not been finished. And won’t even take a glass of apple juice out with the designated slot for that.

The reason we are gaining weight now is the lack of activity due to arm in a sling and crutch! Went to a friends house in May and went on their trampoline and landed on neck
(Very lucky considering ) has nerve damage in neck and moved to leg. So now of school again, isolated from friends (she’s not been around for so
Long and as teenagers they have moved on!) plus some of moods and behaviours may have pushed down away!

Her mood is low, her pain is high. With that we see those ed behaviours increase. To add to this, she is a vegetarian and had never acknowledge really her ED. Doesn’t want To talk about it. Says just wants to
Move on. My worry is if she doesn’t know the triggers how can she prepare self for knowing when to ask for help?? If she doesn’t recognise the behaviours now?

I read about how well eveyone is doing and how they are bAck enjoying life (we had that for a time) I’m just worrgetting I’d we are slipping down the rabbit hole again. I read full recovery is possible, CAMHs basically said this is it, learn to cope.

Are we just to early in brain recovery? We are 2 years from IP and prob 1 year WR.

Sorry for long post. Thanks again.





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ValentinaGermania
Hi hope21,
why are you just a lurker and don´t post often? We are glad to have you here and I am sure with your experience of 2 years now you could help others. And we can help you with new ideas and sometimes it is a pleasure to have a place to vent.

So to your question:
It seems like CAMHS seems to think she is recovered now and that you should live with the ED behaviour still left. I can understand that you are not content with that. We are at the same point as you (1 year WR), but my d is in a slightly better state but also not 100 % recovered (I would say about 80-90%). So I am still aiming for that last % to see full recovery and I do not give up with that.

What you describe is that there is some ED behaviour left (like restricting). I have some questions:
1. What about fear food? Is there any left or is she eating almost all that she ate before AN?
2. You write that she is vegetarian. Is that something the whole family does or is that only her and did she started it to restrict food or long before AN?
3. What about her blood results? My d had a great lack of vitamin B (especially B12) and zinc which causes anxiety, depression and less appetite.
4. Do you know how much fat she is eating? 30% of her intake should be fat, that is in our case about 100 g a day which is a lot. The brain runs on fat and sugar (glucose) and if she gets not enough of that she might not start brain recovery.
5. Is she still eating plated food or did you start phase 2 and how is that working at the moment? You said she is not finishing meals, what are you doing then?

Her weight seems to be o.k. for that hight, although some needed to go to a point they never had been before to see brain recovery start. Did you see some change in mood in the last year? At which point?

Sorry, so many questions...[wink]

Tina72
Keep feeding. There is light at the end of the tunnel.
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hope21
Thanks for the reply. I serve food, she eats it. Snacks - she can choose from the cupboard or freezer. But often she just says you pick. And we have wise choices ie things that aren’t suitable enough for a snack/pudding if we are out. We eat out, can be a challenge. But we do it. We have been working on having lunch out and having different foods at lunchtime as we were stuck on the same lunch.
I have tackled I think almost all fear food, ie will eat chicken nuggets and chips (veggie) will eat ice cream and will have pizza and pasta (they were not in for a long time)!will have garlic bread.
Often get sore stomach and feel sick but push through that, only recently she has been pushing back on finishing some main courses. But it’s a big portion. But H usual sides with her. In the main she is required to finish. But querying if that’s a teenage thing as lots of friends don’t finish or is it a must in an ed child?

We don’t get bloods anymore and haven’t for about a year. She is on iron tablets, and iron was low and had no energy and got every virus about (also asthmatic).

The axiety is around school, and has struggled to be there. Also friendships lots of her friends have moved on and now she can’t walk properly or write she has become very isolated. Her mood is low.

Fat- always has milk in a day, snacks and puddings are biscuits or ice cream related.

Main meals - always veg oil.

But maybe the fat increase had dropped with more shop bought? I’ll have to think about that.

Vegetarian- she became one a year before diagnosis, so she was allowed to continue with that @ IP and since. We have family Members who are veggie. At the time it seems to be related to animal cruelty. But I do know it can be a trigger. And although she was diagnosed in April, she went through months of seeing doctors for stomach pains.

Hope I’ve answered all your questions.

Also I don’t write much as she is pretty much with me all the time, so only once she is asleep. She’s back in with me as anxiety so high at night can’t sleep on own!
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Enn
Hi there, 
I am glad you have joined us. 
A couple things have struck me:
"But H usual sides with her. In the main she is required to finish. But querying if that’s a teenage thing as lots of friends don’t finish or is it a must in an ed child? " You and H have to be on the SAME side. She HAS to finish. The only way to get rid of ED is to eat it ALL. I was taught that "ED lives in the last bite" So to eat the last bite is to kick ED out.  As for normal teenagers not finishing.. Well again if she is anxious at all about eating then I think it is ED and again, I would push to eat it all. 

Is she still gaining weight well? We had to go 10kg and more above the first WR goal to see brain changes. Also my D knows that I am working until she is eating "normally" ie mindless eating of chips, popcorn, just because she likes the taste. We are not at intuitive eating yet...
"Doesn’t eat intuitively and if had something deemed bigger would reduce snack or a pudding. If our for lunch, will always get sushi." This does not seem like recovered at all, in my opinion. She should not be worrying about reducing the next snack/ or meal after a bigger meal- that sounds like a lot of ED thoughts.
Does she need antidepressants too and not just the food? Trying for more weight gain- may help the brain too. Just throwing ideas out for you to think about. 

How do you feel?  Do you think she is recovered? You write that you have a letter saying she is recovered and I don't think you believe it as you are posting here. So I say go with your gut and not what the paper says. It does take a long time and I have heard years to see the brain change. I know you have done this for a while too we are at exactly one yr WR and still gaining and still feel like we have a lot of work to do. 

I hope there is something here that helps.
XXX
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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Mamaroo
hope21 wrote:

Vegetarian- she became one a year before diagnosis, so she was allowed to continue with that @ IP and since. We have family Members who are veggie. At the time it seems to be related to animal cruelty. But I do know it can be a trigger. And although she was diagnosed in April, she went through months of seeing doctors for stomach pains.


My d had stomach pain, nausea and constipation before any apparent weight loss. It was due to her body trying to squeeze the last calorie from the food she had. Standing back I would suspect that your d's vegetarianism is linked to her eating disorder. If the rest of the family is eating meat, so should she. Protein also contains amino acids, which the brain needs to function, to regulate moods and sleep for example. She might not get enough protein to absorb all the amino acids needed. During refeeding my d consumed between 75-100g of protein a day. It is a lot and I used to buy her protein bars and also made my own. 

hope21 wrote:
Also I don’t write much as she is pretty much with me all the time, so only once she is asleep. She’s back in with me as anxiety so high at night can’t sleep on own! 

We did the same! We moved into the spare bedroom for a year. 
Did your team gave her some meds for the anxiety? If not, have you tried over the counter ones?

Sending you plenty of hugs!!!!!
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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hope21
Thanks for the replies.. it sometimes feels like I’m the only who thinks she’s not recovered and that it’s all inmy mind. I have ensured food is always finished. It’s just these last week or two. I’ve been getting chat from H parents about when do we stop feeding her and from H. Which I have ignored but it’s obviously sinking in. They are all obsessed by weight, and talk about it all the time which is why I have kept D away.from them (not h). H has been about as much use as a chocolate fire guard! He knows she is ill, but wants me to fix it! I had to give up work. So now it’s ‘my job’! So I have done all the refeeding etc. She wouldn’t eat with H for ages! H won’t change now,i have accepted that. He does agree she is not recovered. It works he works and pays bills and I do the rest.

She has been constantly gaining since the beginning of the year and because of that and she says no issues with food we have been discharged. She was on olanzapine but came off that at the beginning of the year. Everyone wanted to give it a go with no meds. I spoke to team again about it but they were of the option it was normal teenage stuff. They just look at me as if I’m ‘that’ mother!

She eats quorn instead of meat. But I’m guessing that’s not enough protein?

She refused to finish her dinner last last, but took the replacement food.

I have kept a tight ship on three meals and three snacks since she came out of IP. Which will be two years this October. But we have been experimenting on different ways to do that. I also wonder with the release from hospital care maybe it’s been a bit of a trigger.
Also the isolation from school and not seeing friends.
She is gaining weight as she is doing nothing. Only just made it down the stairs with a crutch yesterday.
I think I’m rambling now! As many have said it’s a lonely place! Nobody understands and most people assume that’ because she looks well she is well! And eveyone has got bored of it! Because she cant do what eveyone can they have moved on! Even the parents of the friends I knew!

I supposed my question has been answered, she’s not recovered! We need to pull it all back in. The veggie thing is huge and I’ve always felt unsure as to whether she can truly recover without having meat again.

Basically keep going. Try and get over this hurdle and get her in school and seeing friends.
😔



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ValentinaGermania
"They just look at me as if I’m ‘that’ mother!"
Please do not believe that one single minute. It is a genetic biological disease and you have done nothing that has caused that.

"The veggie thing is huge and I’ve always felt unsure as to whether she can truly recover without having meat again."
If she got vegetarian one year before diagnosis it is quite possible that this decision was a first AN decision to restrict food. In many cases AN was there many months before we recognized it. So I would definitivly give meat a chance again and see how she reacts if you serve it. If she eats it without complain, leave it on meal plan. If she goes through the roof and you see all AN behaviour again, you will know that this decision was an ED thing and then you need to work on it like fear food.

Forget what all family and friends say or think. You are with her 24/7. You would know if she was recovered... follow your instinct. Plate food, serve fear food and - important - make sure there is enough fat and glucose in her meal plan. 30% of her intake should be fat.

Can you invite some friends to come over to make her socialise a bit more?

Tina72
Keep feeding. There is light at the end of the tunnel.
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Torie
As others have said, I am very suspicious of the vegetarian thing.  I would work hard to add meat to her meals.

I wonder if she is getting enough fats.  They need a good mix of carbs, fats, and protein in every meal and balance is also important for snacks. 

"H has been about as much use as a chocolate fire guard! He knows she is ill, but wants me to fix it! I had to give up work. So now it’s ‘my job’!"

In that case, it is also your right to establish the rules for your d.  It sounds like he has forfeited his right to have an opinion as he has turned this over to you.  My h was reluctant to trust my judgment about prohibiting exercise, but in the end he did, and I'm confident this was a win for my d.  So: Stand your ground.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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debra18
I have the same thing with my husband. He is working and supporting the family. I am in charge of refeeding. It's not ideal but I can understand that for him working is all that he can manage. At least we have people on the forum that understand and are supportive.
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momofboys
Hi Hope21,

I would agree with others.  Your d is not recovered quite yet.

My situation is similar to toothfairy:

"However - He still needs to eat 4000-5000 cals per day to stay in recovery. He eats 3 meals & 2 snacks,thats the plan. The snacks are more like meals too.
But he will not eat so much as a crumb outside the 3 meals 2 snacks, we have been working on this for some time now but thats where we are 3 years into very aggressive intervention & treatment , I stlll cook & plate meals where possible & eat with him.

My advice to you is to keep going high calories & fats & supervised meals for a very long time. Recovery is slow.
Regarding her saying she does not like things & not finishing, I would “require her “ to eat them or life stops until its eaten."

Our son was diagnosed in May 2013.  I would say that most of what toothfairy wrote is true of our son.  He is mostly recovered, but it has been a long road. 

Keep plating your d's food, keep eating with her.  Remember, refeeding and helping your child recover from anorexia is not normal parenting! Also, it is not surprising with her injury that she would have a set back.  Keep up the good work!

Mom of 22 yr. old boy mostly recovered from AN. Dx May 2013, started refeeding June 2013. He is thriving, we continue to be watchful.
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Mamaroo
hope21 wrote:

She eats quorn instead of meat. But I’m guessing that’s not enough protein?

It seems like a good substitute, if she is getting enough protein depends on how much she is having. Aim for 75-100g a day.

hope21 wrote:

She refused to finish her dinner last last, but took the replacement food.

Why? Was it a fear food?

hope21 wrote:
I have kept a tight ship on three meals and three snacks since she came out of IP.

Excellent! Keep on doing what you are doing now. It does take a long time, doesn't it?


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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hope21
Thanks for all the great replies, it’s good to have this encouragement and know you are not alone. At to know this takes a long time. Good to know what others are doing and how long.

Wet food ie with a sauce has always been problematic. Any sauce as well.
It was a veggie/quorn noodle dish that had egg through it and was wet. She wouldn’t eat the sauce. This is what we have been having issues with. Will eat all the bits out of it then leaves the sauce and sort of PlayS with it. She knows she is required to finish. And we sat. But after an hour I took it away and gave something later. Her view is that she doesn’t like it. She’s eaten it before but under duress. I think at this stage I was wondering when preference is allowed and if allowed to leave.

If the leaving was preference or ed. Gut said ED.

We have physio yesterday and have a tens machine to help with pain. I’m encouraging her to contact a friend to come over this weekend. Hopefully friend is free. We have a plan for getting out of the house each day and building on that and then bits of school. It’s a bit more positive.

I think I liked to have the knowledge we were still under CAMHs for weight checks etc and questions and now that’s Gone think i had lost a bit of confidence in knowing where I was going! I’ve been reflecting!

Other parents (and family) have said as much that I need to let her do more be like a normal teenager. Which hurts, I was doing slow and steady. We have had to pull it back in so many tines!

Rambling on again....



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Foodsupport_AUS
I don't think anyone who has not had a child with ED has any idea of how this changes your perspective and management of parenting. It is extremely difficult to wrest control away from the eating disorder, and once out we never want to go back to the hell it was before. We do want our children to grow and be independent, but not at the expense of letting ED in. We know that letting go of that control gives ED a chance, is it any wonder we are reluctant to give it the opportunity? Slow and steady does seem the most sensible way forward with this illness and I have not heard anyone on this board ever say "I wish I had let her do her own thing sooner". We just have to face the criticism firm in the knowledge that we are doing the best we can for our children, irrespective of what others think or see. 
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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sk8r31
What FS_Aus said!  It is really beyond the scope of most anyone who has not had a family member with an ED to understand how difficult and different parenting must be, especially helping someone to WR.

And it takes much longer than any of us would wish to help our kids push through the ED behaviours.  

The end goal is to get your d to eat as freely and 'normally' as possible.  It takes ages to get there, but is so worth it.

Great that you have pushed through most fear foods...but I think that the vegetarianism is a true stumbling block at present.  Our d, like h, did not eat red meat prior to dx (although ate fish and chicken).  It is only now, several years past dx, that she has started to eat some red meat, and it related to blood work that showed low iron levels.  The doc said that she could take iron supplements, but they would not be as effective as eating beef once/week.  

Since she is a YA now, and several years into recovery, she was able to take  this on board and is following through.  One of our FEAST members posted this article recently, and it does have some very strong points to make regarding vegetarianism and veganism.

As regards your d's isolation from peers, just wondering if there is any volunteering that she could do?  Does she have an interest in animals that might be piqued by helping out at a shelter, is there any other opportunity that might get her to connect with others, while also boosting self-esteem.

Hang in there!  

Sending warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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ValentinaGermania
"I think I liked to have the knowledge we were still under CAMHs for weight checks etc and questions and now that’s Gone think i had lost a bit of confidence in knowing where I was going! I’ve been reflecting!"
You can use the paediatrician for weighings and us for questions! We are open 24/7 [biggrin]. You are not alone. We can help you find the way you need to go.

"Other parents (and family) have said as much that I need to let her do more be like a normal teenager. Which hurts, I was doing slow and steady. We have had to pull it back in so many tines!"
I can only copy foodsupports answer. Do not listen to someone what had never had an ED child in his house. Slow and steady is the only way. I can make a long list of things we had done too early but I think there is not one thing where I would say "oh, we should have done that earlier."
Oh- wait: one thing there is: we should have joined in here earlier!!!
But nothing with our d´s therapy...[wink]

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