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

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UKmumof3
Hi all,

My daughter (12) was diagnosed with AN on Monday. When the referral finally went through correctly I was contacted within 24 hours and an appointment made for a week later. I feel very fortunate that we have a specialist Eating Disorder Service in this area as my understanding is that it's not like this in other areas. 

Anyway, I'd done a lot of reading about FBT beforehand and had been trying to get my D to follow that. Although she was still eating (only when she was actually with me it transpires), she put up a fight about what I wanted to give her. She said that she would believe what a professional told her.

We have been given a meal plan to follow, but it is only 1600 calories a day. She will also have weekly appointments and they've stressed, to her, the importance of putting on weight each week. She has stuck to the meal plan this week (except for one glass of orange juice) and has hopefully put weight on as I have kept her off school and she has had to sit still for the first time in months. I was a little confused that they suggest semi-skimmed milk and not full fat and that the calorie intake was so low after reading so much about FBT. I'm trying to accept it and see what happens at the first meeting, as it could be just getting her used to the 3 meals and 3 snacks a day. I have found that her anxiety has increased because of this, but I know that is understandable. 

Does anyone else have experience of this? I do plan to try and find out from them (away from my daughter) next week and see if the plan will be to increase it. The problem is that D is listening to the professionals, so if I try to increase calories and she knows they haven't said to, I don't think I'll stand a chance.

Thanks x
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Enn
I would be concerned about the milk thing too. For a growing child she will need a lot of calories for a long time. 
I would use the fact that your d listens to professionals. Mine did too.My d said " You are not the professional and you don't know anything. Did the doctor/therapist/dietitian tell you to do that?"  So now you have to get the professionals on your side. I would tell the professionals that the semi-skimmed ( I think that would be 2% milk here) will not work over time and that in order for your child to gain weight as they wish you need to use high calorie milk and other foods as much as possible. Of course you  can add cream to the semi-skimmed without anyone knowing. I did that too. It said 2% On the carton and I add a lot of cream to the carton and scored it with a knife so everyone else in the home knew which was d's milk. 

I had to lead the team in essence. I would tell them they had to tell d that she had to eat, for example, nuts that week or we had to introduce a smoothie three times per week and that is how I worked it. Also at 12 they should NOT be discussing what she eats.My other kids never asked about nutrients/calories at age 15 and 18 at the time, so why should a 12 yo know? That part is up to you! I would use the FBT manual there and say to them, that FBT puts YOU in charge of the meals and not them. I had to have meeting with the team who felt they had to use the Canada food guide as the guide for my d! I had to tell them that I could not as that guide is ONLY a guide and that I knew better. 

I will just tell you what we saw with my d. She was admitted on 1800 cal per day. I had to fight for that they were going to do 1500 cal per day then every 2 days they increased by 250-300 cal per day. When she left the hospital she was on 2500 cal per day. She came home and did not increase in weight she went down .4 kg and so I had to increase until 4000-4500 cal per day to get the weight going. It took me a few weeks but I did it. I did not tell the team that I was adding extra cream, oils etc.. They did not need to know how I got the weight on, they just needed to see the weight go up. 

At the beginning, I feel that the teams job is to support YOU and your efforts to get the weight on. So I think they should just weigh the child. Then later they can help with cognitions. In fact I used to bring d in and have her weighed then I would sit for 45 min and talk to the therapist.
I think what helped us here was that d never was told her weight (until recently) or if she gained or not. I knew her weight changes. D would ask me after the weigh in, "did I do good mom?"Whether she went up or down, I just said "yes honey all is fine. You are doing great". That way it did not matter to her and there was no "good or bad" It was just all fine. 
You may ask your team not to discuss changes in weight in front of her. Stressful enough at the beginning just for her to eat. Don't add another burden on top ie the good or bad feeling with the weight.

I hope that helps a bit. 

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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Foodsupport_AUS
Welcome to the forum. 

Unfortunately yes 1600 is low but it may well be that is the plan for starting re-feeding. It sounds like they are not too worried about re-feeding syndrome however it is a potential risk when starting re-feeding, even at home. 

As for the 2% milk. If you are doing FBT they don't tell you what to feed her at all. In true FBT they leave it to the parents to work out what is needed. In the UK however FBT is not offered as a rule, what is offered is something similar "anorexia-nervosa-focused family therapy (FT-AN)"

I have come across the recommendation previously in the UK for 2% milk. It appears that dietitians in the UK are taught that this is the appropriate milk to use for re-feeding. Here in Australia we are taught to use full fat milk around 4% fat. My understanding is that it probably does not make a lot of difference in the long run, but using lower fat milk makes it just that bit harder to get the amount of energy in that you need. It increases the volume required for the same caloric value. Your D will complain about feeling too full, inevitably - so it makes sense to get the calories in, in the smallest volume possible. If you are doing FBT, the good news is you get to decide. 
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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Torie
Hello and welcome.  It sounds like you are off to a good start by requiring your d to eat and to sit.  Yay, you!

My first thought was to try what others here have done - buy the semi-skim milk, then before leaving the grocery parking lot, pour some out and replace with double cream (heavy whipping cream in US).   But then I realized that if you get your d gaining by hidden calories, it will be harder to get the "professionals" on board with the need for increased fats, etc.  It kills me to say this, but perhaps in the long fun, it is better to let your d lose weight for a short time on their scant diet so that they will explain to your d that she needs more fuel.

Anyway, many here (probably most, including me), have "hidden" calories.  I put "hidden" in quotes because I don't think that's quite the right term - when a restaurant serves whole milk and full-fat everything, are they "hiding" anything?  I don't think so - they are giving us what we want.  When you do what you need to do to give your d what she needs, that is a positive, loving thing.

Many here learned to remove all labels before bringing groceries inside.  And to gently but firmly refuse to discuss calories, ingredients, etc.  As Erin said, it is not normal to have these discussions with a 12 year old. 

You are her mum - you have fed her her whole life.  You are the one who knows best what she needs.

Please feel free to ask all the questions you like. xx

-Torie 
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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UKmumof3
Thank you all. Before the diagnosis, I had managed to get her to half of semi / half whole fat milk. I'm still trying my hardest to stick with that. 

I am planning on blind weighing her tomorrow, so we know what weight she is after a week of the meal plan but being at home with minimal movement. She goes back to school tomorrow (the school are supervising her lunch and she's been told that she can add her snack onto one of the other meals, so we're going with that). Her appointment is on Friday so I want to know what effect being at school is going to have on her with that meal plan. They told her that if she didn't put on the required weight, then she would have to follow a different meal plan. I will be doing all I can to get the meal plan switched, but that they don't hand it to her this time. I will then take a photo of it and shred it! 

I will continue to add the extras into the main meal, and as I make everything from scratch she can't work out what has gone into it. I have never considered calories at all in my life - I wouldn't even know what goes into the meals that I make - just that they provide what is needed. 

Yesterday afternoon she seemed to be in a very dark place. She completely shut down to me, although she did still eat. It didn't help that her dad called in to see her and that, despite everything I have said to him and him reading parts of Eva Musby's book, he so obviously doesn't get what she is going through. She is currently sleeping in with me because it makes her feel safe. And I have just bought some aromatherapy roll-ons which she can use on pulse points. I'm trying to make an association with those smells and the safety of my room in an attempt to give her something she can use when she's fighting Ed's voice. I haven't got a clue if it will help. 

Hearing all of your advice gives me confidence, so thank you x
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teecee

It sounds as if you are working out what helps you in your situation and that’s really good. Everyone’s journey is different but we share similarities and you find what works for you. 

I’m so happy that you are gaining in confidence but remember you can fake it too if needed 😀 we did that lots of times in the early days! 


I never knew calories either and still don’t. We used whole foods and full fat everything during refeeding and beyond. Our dietician was actually very good and insisted on whole milk after describing what they do to skimmed and semi skimmed milk in the process...put me right off!! I won’t ever have it again 😀

in the wise words of Torie...just keep swimming 😊💕💕

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ValentinaGermania
Afternoons and evenings where the hardest time here too and many families experience that. ED blames her for what she has eaten through the day.

RE the meal plan, that is a very low caloric intake and it does not make any sense to go on semi-skimmed milk. It is recommened to have at least 30% of intake as fats and I cannot see where you can get 550 calories with fats if you do not serve ful fat milk. Do not listen to that. Many IPs still stick to slow refeeding although it is scientifc proof that a fast weight gain is best.
Keep feeding. There is light at the end of the tunnel.
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Enn
UKmumof3 wrote:
She is currently sleeping in with me because it makes her feel safe. And I have just bought some aromatherapy roll-ons which she can use on pulse points. I'm trying to make an association with those smells and the safety of my room in an attempt to give her something she can use when she's fighting Ed's voice. I haven't got a clue if it will help. 


I think this plan is just brilliant! 
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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Torie
I'm glad to hear she is sleeping with you; there are many advantages to that plan.

I was surprised to read: "she's been told that she can add her snack onto one of the other meals, so we're going with that"

What the heck?  They made that decision before seeing if she is currently maintaining her weight with the current schedule?  I hope that snack has been added to a meal you supervise personally; otherwise, I fear that snack will be gone altogether.

Keep swimming. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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UKmumof3
Torie wrote:


What the heck?  They made that decision before seeing if she is currently maintaining her weight with the current schedule?  I hope that snack has been added to a meal you supervise personally; otherwise, I fear that snack will be gone altogether.

-Torie


This was said at the assessment last week. She will be adding it to her breakfast and then having her 2nd snack when she gets back from school. The school know exactly what she'll be bringing in for her lunch and they'll keep in touch. But d is worried about going back a little as she's had me by her side for the past week to help keep her distracted from her thoughts and the voice ðŸ˜¥
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UKmumof3

RE the meal plan, that is a very low caloric intake and it does not make any sense to go on semi-skimmed milk. It is recommened to have at least 30% of intake as fats and I cannot see where you can get 550 calories with fats if you do not serve ful fat milk. Do not listen to that. Many IPs still stick to slow refeeding although it is scientifc proof that a fast weight gain is best.


I totally agree about the calories. At the moment, it doesn't seem to follow anything else that I've read and it is really hard to get the fats in with their meal plan. I'll keep pushing their plan and question it (away from daughter) on Friday if nothing changes.
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ValentinaGermania
I would simply not do it and go my own way. You know what is right. You are the captain of that ship, you do not need to discuss what you are allowed to feed your child. I know a lot of mums here that changed full fat milk in a semi fat carton at the supermarket parking so maybe that is a quick solution for you too.
Keep feeding. There is light at the end of the tunnel.
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melstevUK
The trouble with many CAMHS services is that clinicians who are not truly up to date with the illness believe that they are making things easier for the patient by not pushing weight gain quickly and by not pushing high calorie foods because they think that it will be too much for the patient to cope with. 
If you can strike out at home on your own you would be better to serve full fat foods and increase her meal plan as you feel is right. You clearly have your D's trust so don't be afraid of telling her that the clinicians, while having her best interests at heart, are outdated.
My d always knew which clinicians were effective and why and I think a lot of patients know underneath when things are being made easier for the illness but simply cannot fight to eat more when they are being allowed to eat less than required .
You sound as if you got yourself clued up with what is required so trust yourself and be confident and show your d that confidence. 
You are doing great.
Believe you can and you're halfway there.
Theodore Roosevelt.
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ValentinaGermania
When we had those problems here I told my d that I talked to really good experts from overseas (that are YOU) and that these experts recommended to do x or y and then she could accept that.
Keep feeding. There is light at the end of the tunnel.
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Kali
Hi UKmumof3,

It sounds as though you are doing well right now. 
I'm wondering whether the mealplan is low because it was just the start of getting her accustomed to eating again.
For example when my d. started with refeeding she started off at 1800 calories a day. This was to get her used to eating again, since she had not been eating much previously. Then the calories were increased every 3 days or so by another 300 calories, until she got up to 3700 a day.

So I wonder if they just gave you this number, the 1600 to get your daughter started and intend it to be increased as she moves ahead. My question is did they say 1600 calories a day in front of your daughter, (I hope not) or did they just give you a list of meals and foods to eat in a day? I would keep any discussion of calories minimal. We refed with whole milk products, no 2%, because every little bit helps. 

You can do the same thing at home. Once she gets more accustomed to eating the amount on the mealplan, increase the daily calories a little at a time. Each day will not end up being the same, some may be more successful than others, but keep at it.

I found that it helped to post a list of the meals on the fridge at the beginning of the week so that we all knew what to expect. Also, if you want to keep a list of the recipes for the meals which she finds easier to eat at this point, as long as they have enough nutrition and calories you could repeat them. That was something we also did.

warmly,

Kali




Food=Love
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UKmumof3
Hi All,

Just an update: 

We had the first meeting with camhs yesterday, to do the care plan and risk assessment. Although it was only the first meeting, I feel like we are really lucky. The team follows the Maudsley approach, and hearing the case worker talking to my D was a bit like reading some of the 'things to say' from Eva Musby's book. I found myself sitting there and feeling confident that this is good support.
We have a new meal plan. We don't know the calorie content, but it was handed to my D and everything on there was explained to her, whilst observing her reactions. It's still very early days, and I'm under no illusion that it will be plain sailing, but my worries from last week have all been addressed so I'll see what comes of her weekly hour-long appointments, which start on Monday.

Thank you all for the comments and support to date.

x
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Enn
This team sounds very professional. Doing this with good back up can really mean the world!
i hear relief in your post!! 
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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Torie
UKmumof3 wrote:
We had the first meeting with camhs yesterday, to do the care plan and risk assessment. Although it was only the first meeting, I feel like we are really lucky. 

Oh thank heavens.  So pleased to heat that.  Please continue to keep us updated. xx

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

Fantastic news that you feel supported. Sounds like they know what they’re talking about. The thing I found to be mindful with about CAMHS is they class it as a success to get to WR and over the initial crisis so to speak....don’t be frightened to insist that they don’t sign you off at that point. You still need to be able to meet up with them for support. 

In the meantime lean on them for help...and come back here whenever you need 😊

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