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

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My 12 yo daughter was diagnosed with AN in December, has been under CEDS (CAMHS) in our area since then and had been doing well. She followed the meal plans, generally made the required weight gain each week and had reached 82% weight to height. She was due to return to school in a week's time.

And then that literally changed overnight a week ago. She had been having a lot more thoughts about not feeling ill enough and that she had found it too easy to follow the meal plans. But I reassured her, and her keyworker reassured. She woke up on Saturday morning last week and wrote me a note to say that she couldn't eat any more.

Since then, she has had days where she has eaten a piece of bread and a plain biscuit. We saw her keyworker 3 times over the course of the week because her weight loss was quite drastic within the space of the week and she has lost everything she had put on since the middle of December. She was also monitoring blood pressure and pulse.

She has been assessed at the local hospital, who found that her bloods, ECG and blood pressure and pulse were all fine and we are trying to get through the weekend until the next appointment with CEDS on Monday. She has had her meal plan adapted, but she is just refusing to eat. I have sat with her for hours on end encouraging her etc and she responds that she won't eat it, pushes it away, ignores me. This morning she's got angry, thrown food and lashed out at me. She has said that she just doesn't think she is ill and she feels that the only way for her to really realise she's ill is to be admitted as an inpatient in a specialist unit and to be tube fed. She actually thinks she wants this to happen.

Two of the keyworkers at CEDS have talked to her about this and told her the reality of being in hospital and that they want to keep her out of there because of her age. But it's like she can't see another way. I think I've done all that I can and I'm at a loss as to how all of this happened so quickly: full compliance to refusal overnight. I'm heartbroken.

I am sad to read this this morning. I am sorry this has happened. This is a common thing with ED and it has to do with the severity of her illness. 
I do hope the team has given you a plan of what to do if she does not eat. 

She will say that she is not ill- that is how ill she is. (Anosognosia)
For her wanting to go to hospital is very telling for me. I think it should happen. ED has a weird language. 
Remember if not drinking for 24hr or less than 500 cal per day for 2 day--> please get to hospital and take food in the car. She may eat prior to getting assessed if there is a long wait time in ER.

As for understanding WHY this happened right now, it is hard to know.
Was there a trigger via school, or the internet or someone saying something? Was it ED taking a firmer grip on her mind? Either way she needs to get the weight on again and more and if it is IP, then so be it. 
I actually feel from what you have said above, that IP may be necessary right now. She is only 12 and young kids can hold on with their BP and HR for so long and then they collapse.

This is not easy, not at all. It is a very insidious illness. With twists and turns along the way. 

I am sending kind thoughts your way and hoping this episode if short lived and you and she get back on the track to getting her well, no matter what that looks like.

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)
Sad to say, but some rare cases really do that and stop eating totally and they need to get tube fed asap.
Try to insist on getting her to hospital on Monday and do not wait any longer. It can get worse very fast.

"She was due to return to school in a week's time.
And then that literally changed overnight a week ago."

Do you think this could have to do something with her anxiety to go back to school?
That this might be her way to say I am not ready for that, I am too sick to do that?
Keep feeding. There is light at the end of the tunnel.
Thank you both. I also feel that she really needs that specialist help, and most probably to be tube fed. She is still drinking enough water and she has had one biscuit today, but she has already decided in her mind what she will eat and will not budge on anything else. 

I wonder if there is anxiety about going back to school, especially as she found out that people at school had found out via a friend of a friend. But the AN thoughts have been really strong for a while and I think she is so tired of fighting. 

I'm very thankful that she talks to me about it all - most of the time - and that she feels that she's identified why she thinks she needs to be in hospital. 

Thank you for your support x
If you can talk about her anxiety about school, tell her that most kids are afraid of going back to school but that in almost all cases what they fear is not going to happen. Kids are often not interested in any details and just fine with "she is back". Most kids do not get any questions about their absence or the disease and the friends continue as if she never was absend at all.

Can she see some friends for a playdate to get her calmed down about it a bit?
Did you tell her she does not need to go to school if she is not ready at the moment?
Can you explain to her that it is not necessary to stop eating if she is too anxious to go to school and that she can simply say that she is not ready?

Just brainstorming ideas to turn that around and make tube and hospital not happen...
Keep feeding. There is light at the end of the tunnel.
Thank you for your thoughts. Although the school thing might have been at the back of her mind, I'm not convinced that it triggered this change. She has missed school and her friends and trends to be very good at dealing with something and moving on. She had even forgotten about the friends things until I brought it up in the appointment (or so she said!). 

The keyworker had said in a few appointments that she'd done well, that she had a sparkle back in her eyes and a few other things. D has said this makes her feel like she's finding it too easy and therefore equates that with not being ill. And I just think these thoughts have been getting stronger until she can't deal with them any more.

She really sees hospital as her only option even though we've brainstormed positives and negatives of being at home and in hospital. I've encouraged her to think of reasons to fight through this, but she doesn't see anything which is close enough in time for her to focus on. So she also sees 'hospital...tube feeding...hating it all and wanting to come home' as her motivation. To me, it sounds like she's got it all worked out in her head.
Ugh.  So sorry.

It is unfortunately common that as they near weight restoration, all hel1 breaks lose.  So it may be a biological effect as opposed to someone said x or someone did y.

I hope they will take her asap and will do tube feeding.  I'm sure you want her to get back on track asap.

Thinking of you. xx

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
It really is tough. Being told you are 'doing well' seems to bring out the full force of the ed in response and I wonder if this has been the real trigger. There can never be any relaxed conversations with anorexic patients and even the best clinicians seem to struggle with this one. 

Her age matters not in terms of hospitalisation. Weight can fall drastically within a week when so little is being eaten. I would press for an immediate hospitalisation  if a bed is available. It takes a lot of energy to fight through an ed which is why it really needs others to do the insisting on eating. 

Try and see this as a blip on the recovery path. If they take her in and react quickly and fit ng tube as she feels it would help, you could have the whole situation turned round and be back on track in a couple of weeks.  Do nothing and the weight will fall off and that really would be disastrous. I hope you can get the support you need to turn things around. 
Believe you can and you're halfway there.
Theodore Roosevelt.
So sorry to hear this it must be so terrifying for you for her to change her eating behaviour in this way.  I hope you receive the support required and that things start to improve again for you xx
Hi UKmumof3

UKmumof3 wrote:
The keyworker had said in a few appointments that she'd done well, that she had a sparkle back in her eyes and a few other things. D has said this makes her feel like she's finding it too easy and therefore equates that with not being ill. And I just think these thoughts have been getting stronger until she can't deal with them any more.

My son totally freaked out at any compliments or positive comments. He felt patronised for being complimented on doing something as normal as eating. Any comments on positive changes in his health caused such an outburst of negativity that I can only assume that the ED thoughs exploded in his head. The only sort of comments I could get away with were very matter-of-fact, very short and very much in the moment such as a simple thank you when he came to the table. 

No matter what happens as regards hospital, you need to give the keyworker feedback on how your daughter is reacting to compliments.

Has your daughter eaten anything today? A tiny amount of <500calories for 2 days still requires a trip to A&E, especially for younger patients as they can deteriorate quickly.

There are a few ways you can deal with this
  • you can sit at the table, use paper plates, have food in reserve and just keep at it, replacing any food thrown (either ignore the mess or clean it very quickly without comment, I find). A matter-of -fact mantra to reply to her comments such as 'I love you and we're going to sit here for as long as it takes, pick up your fork please' 'Mmmm,hmmm next bite please' No using logic or responding to her specific comments (this was a huge challenge for us and a big change from our previous parenting style) - it simply does not work. Swop with another adult if you are getting tired or finding it difficult and emotional. Many have found that a marathon session, sometimes through the night, was enough for the child/ED to see that the parents have more determination than them and they only had to do it once or twice
  • you can serve each meal and sit for maybe 2 hours or so and then take a break and return to the table after 45 mins or so. Repeat until it is understood that food is the most important thing. Mantras and not engaging in ED negotiation as in the first point.
  • after an hour or so, replace the meal with a very high calorie smoothie of fruit, ice cream/cream and oil or Nutridrink, Fortisip etc. Some find it easier to drink than to eat. Again, it is the parent is deciding when the replacement happens and what/how much replacement is required
  • some have found that, surprisingly, feeding their kids as if they were young again works well
  • bring the meal with you in the car as you head to A&E, many kids have found when the hospital is right in front of them that actually eating the food is the better option. Obviously, this will only work if you are going to bring your child into the ER if they don't eat.

If you are looking for ways to help your other kids, here is a FEAST resource page and here is a ATDT thread.

Wishing you strength and courage from another mum of 3,

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.