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

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Ranchell01
Hello,
I’m new to this forum. My D is 12 years old and developed restrictive anorexia back at the middle of February. We had a rapid decline while I was desperately trying to get her seen by the appropriate professionals. This culminated in an inpatient admission in March for two weeks then transferral to an inpatient unit on the first April. Things started well, she began eating 1500kcal, increased to 2000kcal and steadily put on approx 0.5 kg/week for 6 weeks. No change in anorexic thoughts or behaviours and very influenced by the inpatient environment. She started self harming and this has got worse despite 1:1. 5 weeks ago because of terrible anxiety post eating her meal plan was reduced to three meals a day. 1200 kcal. She comes home Thursday nights to Sunday evening because her home sickness is so terrible and we manage 1450-1700 kcal at home. Shad to go back to the unit early today because she couldn’t manage lunch- this has been our agreement. 
She has stayed the same weight for 5 weeks now and is starting to struggle with those three meals more now.
my question is should we be pushing for more calories and a restart of weight gain in order for the chance of any change in behaviour/ mood/ depression and prevention of all the physical problems around this pre puberty period. One option put forward was overnight NG feeding and no food during the day. What are people’s experience and opinions please?
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scaredmom
Hi there and welcome.

I do hope you find the support and information you need to help your d.

The anxiety is part of this. And the only way through is to get the weight up ASAP. That may help her but it takes time over time and I mean months the brain can start to heal. It took us here, 6 months after WR and then even more weight to see her thoughts get better. You say her meal plan was reduced to three meals per day? How many meals/snacks was she on before, this change can aggravate her issues too. Many need 3 meals and 2-3 snacks per day. We are still at 3 meals and 3 snacks at 2 years in.  As IP they are required to keep her safe from self harm. Is this a specialized ED unit? She is only 12 and the goal is weight gain +++. I would try to continue to get the food in orally as best possible and supplement with NG only  if needed, but to give no food when she is eating some is a back step, IMO. 
Please ask all the question you have. We really do wish to help in anyway we can.
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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scaredmom
Oh and yes for sure increase her caloric intake. The sooner the better. 
I know it is awful. But she is young and has a good chance at full recovery. It is an illness you have to hit hard and fast. 
I am glad you posted and hope we can be of help to you.

ps my d needed 4000 + cal per day to gain well. 
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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Ranchell01
The decrease in calories and the removal of snacks was to simplify things for her in the very short term. The thinking was that her extreme anxiety 6 times a day was consuming calories. We are in a specialist ED unit and they are very reluctant to go down the NG tube route. Her consultant has been away for 2.5 weeks now and no one will make any changes while he is away. 
Its been a double edged sword in the IP unit. They are all very competitive and all want to be the best at being anorexic in there.  I have been weighing up discharging her and trying to do it at home but there is very little community ED support. 1 hour a week. She cannot cope with her home school but is going full time at the unit and is attending individual therapy at the unit. I am very unsure of what to do. We have a CPA MDT next Friday so I can bring up all my concerns there. My D feels so tired with it all and states she can’t eat anymore and feels like she is going to break. 
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scaredmom
Just more thoughts here,

interesting the thought about anxiety causing more burning of calories. I would think the food was the cause of the anxiety and to decrease the anxiety more exposure to food would be necessary. And adding more calories for the anxiety would be a way through? Sorry it just sounds so counterintuitive what they are doing.  Many have found with weight gain a lot of it and time as I mentioned above the anxiety gets better. My d also needed some meds.

i know in the UK the care is variable and it is very difficult to know what to do. 
There must be another consultant available to make decisions to move the weight up? I hope there were plans made prior to them taking leave and documenting what to do when and if. 
yes they are competitive. They all say they cannot eat more and eating more is the remedy. 
Do you know what kind of therapy she is getting? Talk therapy may not help right now as her brain is so ill. 
Some have done it alone at home and I understand how hard it is to make a decision about what you feel you need and how to get the support you need Ip or at home. 

I know others will he here soon to render their  support and guidance.

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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Ranchell01
Thank you for that. She is on olanzapine to help with the anxiety.
From everything I’ve been reading and what the IP team initially said I really feel we need to increase her calorie intake and push through out of this stuck place. 
The individual therapy is art therapy and is trying to help her stuck brain with coping with the anxiety. 
My D is refusing to take in more calories and at the moment she is controlling what is happening. This all seems to be heading towards an NG. My D today said the only reason she is still eating is that she knows she will get more calories and have no control with an NG.
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Foodsupport_AUS
Oh dear. Yet another example of poor care. A specialist unit reducing intake because of anxiety. Anxiety after meals is to be expected, for some kids it lasts the whole day. As scaredmom has said, the only way is through this. Reducing intake is never going to help her get better, in fact in the long term it may reinforce the anxiety around foods. It sounds like they need to go back up to her meal plan immediately, at present they are starving her. I am furious on your behalf, they are reinforcing her ED. The anxiety may take a long time to get better, for my D we had several years of this, including after weight restoration. We had comorbid self harm and suicidality as well. 
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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tina72
Is that a specialized ED ward there?
They are not doing their job there!

If a patient would be afraid of taking a lift/elevator it would not help him to tell him his anxiety is realistic and he does not need to take a lift/elevator. It woud help him to give him a hand and help him to get through his anxiety with the aim that at the end of therapy he is able to take a lift/elevator alone. First standing in front of lift, then setting one feet into it, increasing amount of exposure therapy. Same with EDs. It does not help anything when the IP team is afraid of food too....
Keep feeding. There is light at the end of the tunnel.
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Ranchell01
The consultant seemed to think an NG and no food would be a backward step. Thank you for your comments. I can go into the MDT with a clearer set of questions to ask now.
They have been doing open weighing at the unit and I am starting to feel this is not helpful. What are people’s opinions on this?
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Mamaroo
I agree with the consultant, my d was refed on NG tube and ensures and it was so hard to get her to eat proper food again. As for the weighing, it was always done blind. Now and again she found out her weight and it resulted in a huge meltdown. When she was WR and had some months of brain healing, she was not upset when she saw her weight. I can see no point in open weighing as the resultant anxiety is making eating more difficult. When they are at a good weight, the number on the scale is not so scary anymore. 
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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Foodsupport_AUS
Open or blind weighing can cause problems either way. We did both at various times for various reasons. Sometimes open weight can just cause the brakes to go on and causes so much anxiety it is just not helpful. Other times not knowing increases resistance because by not knowing the anxiety increases and they imagine things are worse than they are. If open weights are not helping a trial of a few months of blind weights will give you an idea as to how things are going. Other variants are no numbers just OK or not OK ie. OK if gaining - not OK if neutral or loss. 
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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tina72
We first did open weighings as this was normal here in IP and she fought that last kg to WR like hell. We then changed to blind weighings and she never asked for her weight in the last 2 years again and is not even interested to know it. I could get her on a good weight for her body within 2 months with blind weighings.

I see it the same, NG instead of food is a step backwards but they need to give her enough food to gain 0,5-1 kg a week or they need to add NG tube feeding after normal meals if she does not eat enough.
Keep feeding. There is light at the end of the tunnel.
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Ranchell01
God it’s so hard. I know she is not getting enough calories in and I can see how hard she is finding it. I can’t see how she is going to manage more. So then do we just have to go with the NG tube and get the extra calories in and deal with the consequences of that afterwards hoping there will be a change in her mental state at some point.
At the moment she is unsure about what happens next. A few weeks ago she was asking for an NG tube because she wanted the responsibility of eating taken away from her. It was felt to be such a step backwards at the time that the current plan was put in place. I’m hoping that she will continue with three meals and have supplements in between to increase the amount going in. But at the moment she is struggling with just the three meals. So unless a miracle happens I can’t see that happening. 
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tina72
"A few weeks ago she was asking for an NG tube because she wanted the responsibility of eating taken away from her."

This is what needs to happen. To take the responsibilty away from her. With food, ensure or NG. No matter what.

She needs to gain and have a good intake and full nurished brain to get better. This is first thing that must happen. No matter how. She cannot be in charge in that state. She cannot make any healthy food decision in that state.

3 meals is not enough. She needs to eat every 3-4 hours to keep her blood sugar level constant and to not get hungry.
If the IP team waits for insight and waits for her to WANT to eat more they can wait forever. That will not happen.

She already said what she needs. She said she needs responsibiliy to be taken off. Now someone else needs to be responsible. If IP team is not, who else?

She can only manage to eat more when someone requires that. This is the responsibilty of the treatment team. If they do not do that, how can she get better?

If they continue to feed her only 1200 cal that means they continue to let her starve herself. Due to WHO an intake of only 1200 calories is not enough food. They let her starve that way. This is not only delaying her recovery, it is in my eyes cruel to let a person starve in IP. Your d inside is hungry. She wants to eat but ED does not allow her. IP here did the same mistake. When my d was better she told me "mum, I was SOOOO hungry every day". I was crying when I realised that my d suffered from severe hunger and I did not help her to be able to eat and IP did not help her to get enough food either.

Insist on increasing portions and intake slowly every day until she gains weight constantly. This is most important thing in ED treatment and if they cannot do that there she is at the wrong place.
Keep feeding. There is light at the end of the tunnel.
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scaredmom
Ranchell01,
A few thoughts. First and foremost weight gain any way how. Your d will be upset no matter how you do it. Although it is best to get her to eat orally and push 3 meals and 3 snacks, If she needs help in the day with some NG feeds is that really a problem? Why can’t they do both? (Can they do both and then push the oral intake) The matter of her anxiety is making them stop the proper treatment which is nutritional rehabilitation. The anxiety and her fear she cannot do it, is  the crux of why they do not push the calories up? Giving into her anxiety will stop  her from moving forward and the team should know that. The goal is not to make her feel comfortable with eating it is getting the weight up, only. The discomfort will happen and has to happen to get to the other side. The surgeon has to cut into you and it is painful to get the infected appendix out. And after the painful surgery then the healing can begin. I am trying to reframe so that you can discuss with the team. We all have to tolerate their distress even the doctors!
I would have a formal discussion with the team as to why she is not gaining and how they will fix that. That is the issue here, how they do that does not matter in the short term and can be life saving. 
I would really consider doing both 3 meals and NG feeds there is nothing to lose and the weight gain is now crucial.
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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Ranchell01
We have a formal review with all professionals concerned on Friday. Thanks everyone for helping to clarify my thoughts and helping me to focus on what I need to get my energy behind. 
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debra18
Great. The most important thing is sufficient food intake and increasing weight at this stage. No other way through.
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deenl
Hi Ranchell01,

I'm so sorry that  your IP team are failing at the most basic task of ED treatment. Our team, too, failed to feed our son adequately and he lost weight IP! In the end we did have to take him out but with the support of an excellent pediatrician. We then prioritised nutrition by having a schedule of 3 meals and 3 snacks. We refed on safe foods and only introduced variety when he was at a less dangerous weight (we have been blind weighing for many years now, he could not gain weight while knowing the figures but all kids are different). Refeeding at home had risks and benefits and was extraordinarily demanding on us as parents but was the correct choice for our situation.

During my research, I found the Kartini Clinic website to be very helpful. Here is how they use NG tubes, although you do have to remember that they are true experts and have the correct protocols in place for getting the child to eat real foods again asap. Unfortunately, nothing in ED treatment is straight forward.

Wishing you strength and courage on your journey,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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scaredmom
Hi Ranchell01,
Just thinking about you.
how did the review go?
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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Ranchell01
I’m sitting here feeling very frustrated at present. We had the CPA on Friday which lasted two hours. The consultant has been away for three weeks. It was his first day back and the meeting was really a catch up for him rather than an informed review and plan of how to move forward. I have been speaking with the dietician, family therapist, ward doctor, individual therapist, school teacher, nursing staff on a regular basis. They have all been waiting for him to come back to make decisions. He is very reluctant to go down the NG route and I do get what he is saying. She is eating three times a day and he doesn’t want to destroy that progress. He doesn’t want her to get stuck on an NG and stop eating all together and doesn’t feel that 89% WFH is terrible. He said calories need to increase but we need to do it slowly and have patience and support her through the anxiety. No changes have been made at present and he is going to speak to my d on Monday. I feel we have gone into the weekend with my d in a much more anxious/ fragile state. Her home leave this weekend was cancelled. She has increased her self harming is crying all the time and her anxiety levels are through the roof. 
I am going to organise another appointment with him after the weekend.
I feel like we were all waiting for decisions and change on Friday but that nothing happened. I feel unsure about what is best but don’t want to let my frustration and disappointment drive my behaviour. I was talking with our family therapist about my conflict. All the research and advice is rapid weight restoration but we aren’t doing that. She also said that they don’t always see it working that way. Sometimes patience is called for. I understand I need to have some trust in the professionals especially when it’s not a clear path. I don’t want to make things worse.
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Kali

Dear Ranchelle01,

I'm sorry this seems so complicated. Just wanted to throw this out there. When my d. was in residential, the way they increased the calories was to add 300 more every couple of days or so. So they started out at 1800 when she first came in, and she was on a maintenance plan for a couple of weeks to get used to eating again, and when she was completing those meals they then increased her calories by the 300 every few days until she got up to 3700 a day which was a good amount for her to gain weight. Using that plan, it took 8 weeks for her to gain 20lbs which is what she needed to do. So I do agree with the psych. when he says they want to increase the calories gradually. What is their plan to do that? And as the psych says, it is good that she is eating the three meals a day. That may mean she is ready for the next step; increasing calories gradually. In the weight gain phase my d. was expected to gain 2.5 lbs a week, which she did. The calories were worked out very carefully by the dietician.

The thing that seems to help is working through the anxiety about eating by eating, a kind of exposure therapy. 

Here is an article about exposure therapy. 

https://www.eatingdisorderhope.com/treatment-for-eating-disorders/types-of-treatments/exposure-response-prevention-therapy-erp

Also a therapy which my d. said was one of the the most helpful while she was inpatient is called REACH.
It was done as a study at the time and it makes a lot of sense. Here is an article about that. I'm not sure whether your team can look into this?

https://www.edcatalogue.com/decision-making-brain-anorexia-nervosa/

How is she able to self harm on the unit and how is she being supervised? Maybe she could benefit from increased supervision and additional support to come up with strategies to work on the self harm urges.

warmly,

Kali


 

 

Food=Love
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tina72
Ranchell01 wrote:
He is very reluctant to go down the NG route and I do get what he is saying. She is eating three times a day and he doesn’t want to destroy that progress. He doesn’t want her to get stuck on an NG and stop eating all together and doesn’t feel that 89% WFH is terrible. He said calories need to increase but we need to do it slowly and have patience and support her through the anxiety. No changes have been made at present and he is going to speak to my d on Monday.


Only 3 times a day eating means big gaps between meals and that means big gaps for ED thoughts and AN. This is not good and not recommended normally. They should normally eat every 3-4 hours to keep the blood sugar level constant and that is not possible with only 3 times a day.

89% WFH is not terrible but also not enough for recovery. He says calories need to be increased but no changes have been made? How should calories be increased in his eyes? Slowly is o.k. but it must be going forward.

About what does he want to speak with your d on Monday? About what she wants? About how many calories she wants to increase? I do not see why it is needed to speak to her at all about that. Food must be increased. The team is responsible for amount and how many meals and snacks. That is nothing that should be negotiated with the patient.

Ask him how long it will take to get your d WR and how long he will continue feeding her less than WHO standard. Starving kids in Africa get more food daily from UN than your d.
Keep feeding. There is light at the end of the tunnel.
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Ranchell01
We have a meeting set up for today. He has spoken to her about slow ng feed overnight and nothing during the day until she is weight restored and then to begin eating again to maintain.
i am just going to read the articles in the reply above before I go to the unit later. My d seems really happy with this plan and has begged. E to let it happen.
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HopeNZ
Hi Ranchell01

i’m so sorry this is so much harder for you than it needs to be. I’m sorry to say I really question the consultant’s thinking here. Firstly, as Tina says, there is no need to consult your d on her wishes at this point. Not only will anosognosia mean she likely doesn’t understand how sick she is, but it is also likely ED is in charge and seeing the plan as an opportunity to continue to avoid eating. 

As for the ng feeding, there is no reason why it can’t happen alongside regular oral food intake. In fact, on so many levels it is important that some sort of oral intake (or bolus feeding) is maintained if at all possible: social, psychological, medical. 

Thirdly, does he really suggest keeping her on the ward, on ng tube, until she is wr and apparently ready to eat orally? She is more likely to be discharged before wr, at which point you’ll be expected to suddenly reintroduce meals! 

One of the main reasons our d’s hospital stay was successful was that she was fed via ng tube but also expected to eat all her meals and snacks, even though at the beginning it was sometimes only really going through the motions. If she couldn’t eat, the equivalent was added to her tube. So either way the weight was going on. In time her meals were increased and her tube reduced so when she was discharged, medically stable but not yet wr, we were set up as well as we could be to continue refeeding at home. 

The ward my d was on followed strict protocols for treating ED in a regular hospital ward. I will try to post them for you.
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HopeNZ
Here is part of the protocol I mentioned above, Ranchell01. 
https://media.starship.org.nz/eating-disorders-nutrition-plan/nutrition-plan.pdf
If the link doesn’t work (i’m doing this on my phone without my glasses!) you could try googling Starship eating disorders protocols. These are the gold standards for assessment and treatment of EDs in hospitals in New Zealand. 

I hope this helps you to advocate for your d. Sending you strength in your dealings with a medical professional who should know better 💖
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