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yellowcaty

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Reply with quote  #1 
Hi
After a long hard slog my daughter seemed to be making some progress. She put on .8kg after loosing weight since her diagnosis. She only weighed 100g more than her assessment weight 8 weeks previously, but did seem much healthier.
We have had a two week break from her CAMHS sessions over Christmas and things have gone down hill quickly. She is resisting food and very depressed. She will be weighed tomorrow and I am dreading it.
I know most of it is my fault as I should have been stronger over Christmas, but it was so hard. I have 3 other children and we visited family. I'm not sure how we can get back on track.
Torie

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Reply with quote  #2 
Please don't blame yourself, YC.  Holidays add extra stress and strain to everything, and blaming yourself won't help your d one whit.  In fact, blaming yourself hurts your d because it saps your strength, and your d needs you as strong as possible.

If you don't mind giving us specifics about the challenging in re-feeding your d, we can help brainstorm ideas to try to get your d back on track.

Hang in there.  We're with you in spirit. xx

-Torie

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

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Reply with quote  #3 
Hi Torie

We are in the UK and at the moment she sees a doctor, specialist nurse and dietician weekly. At the moment they are only focussing on weight gain and she won't recieve any therapy until she is weight restored. They won't as yet tell her what her target weight is. The diatician goes through her meal plan and adds to it when necessary. My D will only eat what has been discussed so that can be quite stressful. The only thing we can decide in is dinner. She still has 3 Forticips a day and her meal plan should be just over 2000.
At her last session they were concerned about how much work she was doing and how little sleep she was getting. She was working until about 3 in the morning. They suggested that she handed over her laptop and phone at 10 each night. This caused her lots of anxiety which then impacted on what she ate for several days.
She has never given us much of a fight over eating as she would just make herself sick. We have managed to control this over the last 8 weeks. Over Christmas she has started resisting one of the forticips and will no longer eat the cereal bar. She said this is because they didnt directly tell her to eat it. The dietician said that if she wanted to eat some chocolates etc then she could swap it for a forticip. She had a couple of chocolates on 3 occasions, but then made herself sick. She will also only have a very small portion of dinner as they said about half a normal sized. If I give her more she complains about being full and feeling fat. I think on average she has had 1600 cals a day over the past 2 weeks, sometimes as little as 1200.
EC_Mom

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Reply with quote  #4 
Dear Yellowcaty, so sorry it has been difficult. Here are things I see: Your team insists on weight gain above all and is not focused on therapy. Actually, this is GOOD. A lot of people on here have teams that do not prioritize weight gain--your team is doing the right thing here. Therapy is not all that useful when the brain is not adequately nourished and the body at a healthy weight. So congratulations on getting a pretty good team!

Now, 2000 calories is nowhere near enough for weight gain. She might need more like 3000-5000, which is what most of our kids who have recovered needed. 

Can you talk to the dietician privately? Maybe you could ask the dietician to instruct your daughter to eat what you give her. And meanwhile you can also sneak a lot of extra calories into the food, with whipping cream and canola oil, for instance.

If your d is vomiting you need to interrupt that behavior. You have to monitor bathroom use after meals for at least an hour, for instance. 


frazzledmum

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Reply with quote  #5 
Yellowcaty, I don't have much advice as I am in the same situation as you, things have been tough over Christmas  (caught D pouring her ensure down the sink for example). It is so hard to get the balance right, especially with other siblings and visiting family as well, our specialist nurse told us to try to have a 'normal' Christmas, so we tried to relax a bit, but getting back on track with ED is not easy right now.

Just wanted you to there are others in the same situation and I wish you lots of luck and courage.
yellowcaty

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Reply with quote  #6 
Thank you Frazzledmum

It is so good to hear from someone else in the same position. I just always seem to feel so inadequate and however hard I try, it never seems to be enough. I can't quite believe how life has changed so rapidly.
We were more relaxed over Christmas and let her get away with more than we should. Weigh in tomorrow so will start again when we know what we are dealing with.
Foodsupport_AUS

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Reply with quote  #7 
As EC Mom has said, it is great that your team is prioritising weight gain over therapy, and even that they have not given you a target weight. A target weight is always at best a guess, and ED will latch on to it so fast it can be very troublesome later on in terms of getting to full recovery.

It sounds as though team, despite prioritising weight gain is also scared of frightening your D. Again a common problem, most people don't like to upset others, but the fact is that the faster your D regains her weight, the more likely she is going to get to full recovery. Two months without any significant gain is a long time, for some they can get to full weight restoration in 3 months. My D also point blank refused to eat anything that wasn't on her plan. She also like your D refused to eat the plan too. Which really makes the plan useless! So what can you do to move things forward. This is going to take all you efforts and that of the family. There is no easy path through this and no easy fix. Can you now after the break take some time to knuckle down and make sure that everything is going in. Her weigh in is irrelevant if she is not eating her plan. She needs to gain and gain fast. She will be terrified. She will feel full most of the time. This is normal.

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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.
Torie

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Reply with quote  #8 
I agree with EC_Mom and FoodSupport.  There is nothing easy about this (going for Understatement of the Year with that one), but the only thing that really matters right now is weight gain and stopping purging.  It is so hard!!!  Hard for you and the whole family but hardest by far for your ED-D.

I think most here have had the best luck with keeping ED-kid out of the kitchen and out of meal planning altogether.  Your job is to plan meals and snacks, shop, prepare meals, and plate them.  Her only job is to eat what you serve.  It will be hard hard hard and scary and uncomfortable for her.  

Can you speak with the rest of the team without your D there?  It would be great if you could convince them to tell your d to trust you and to eat whatever you serve.  That would probably be the best, but if they won't go for that, it would help if they would avoid EVER telling her a target weight and make clear that she needs to eat a lot more than she is eating right now.  Ideally, she should be gaining a minimum of 1/2 kg per week - your team should support that and insist on it.

Please try to nip the purging in the bud.  It will be REALLY hard to stop if it gets entrenched.  I always told my d she needed to use the restroom before each meal / snack so that she could stay with me for at least an hour afterwards.  Sucks, but oh well.

Have you seen Eva's bungee jumping video?  It was a huge help to me.  I'll be glad to post it here if you haven't seen it.

Hang in there.  Please ask all the qeustions you like.  xx

-Torie

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

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Reply with quote  #9 
Hi
Thank you for all the replies and advice.
Just a quick update. Weigh in today and she has lost another 1.4kg and is now at her lowest weight. They mentioned hospital again today as a consideration if she loses any more weight. They also talked about her not having gained any real weight since we began. She has been above her initial weight but then loses it again.
I know that I need to take charge and be stronger. Hopefully today will give her more motivation as she doesn't want to go into hospital.
sk8r31

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Reply with quote  #10 
Hang in there...and if a hospitalization is needed to jumpstart recovery, then use that time to catch your breath & refocus.

During our family's journey, our d needed a short stay in the hospital for medical stabilization.  

This doesn't mean you've 'failed', only that at this juncture a higher level of care is needed to get your d on track.  'Feedback, not failure' is a useful motto that gets used on ATDT often.

Sending strength and support to you,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
beeessbee

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Reply with quote  #11 
I am a new member. We also had a very tough Christmas/holiday season. D had gained 0.6 kg in week 1 and a further 0.6 kg in week 2 of refeeding and then we were with family in the 3rd week (last week). She was weighed today and had lost 2kg in that one week! It was really difficult to stick to the meal plan but had no idea that relaxing it even a little would have such a drastic effect. Like others on this thread, I'm feeling like I failed miserably in keeping her on track. Part of the problem was she was so desperate for others in the extended family not be aware of what was going on. That did not help at all. I did try to supervise her for an hour after each meal to make sure she wasn't purging but have no idea if she exercised in her room after we all went to bed. I don't really know how to deal with that if that is indeed happening. Also getting back onto the meal plan again is proving so difficult. Just wanted you to know that we're in a similar situation to you. Any additional words of wisdom would be greatly appreciated.
tina72

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Reply with quote  #12 
Hi yellowcaty,
maybe it can help you to take her to hospital some time. In our case my d needed to see that tube feeding really exists.
If she really don´t want to go there, get your big girl pants on and try to get on path again. She needs to eat everything you put in front of her to avoid that. And as EC-Mom said, everything below 3000 calories is ridiculous to expect any weight gain at that state.
Try to add at least 2 heavy smoothies to the meal plan, that will give you 1000 calories extra just by drinking one glass. Smoothies saved our life...[wink]
You can wake her up early in the morning with the glass in your hand and just say "drink that". ED is asleep at that time and she will roll around and get to sleep again and in the best case she later doesn´t know that you woke her up...
Tina72
tina72

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Reply with quote  #13 
Hi beeessbee,
a warm welcom to the forum from Germany and sorry that you have to join us. That is a wonderful place here and you will get a lot of help.
First: you did not fail, you learned something. That is a big difference. You are very early in your ED journey and I am still learning day by day after a year. You got weight gain in 2 weeks. Forget the 3rd one and get back to start. What did you do in week one and two? Try to think about that and do it again.
Christmas/holidays is not a normal week. Until Easter you will have learned what to do to avoid that happening again. Failure is part of the prozess. Don´t feel bad about that, we are all making mistakes every day.
Relaxing the meal plan has two negative outcomes: First you will not know wether she ate enough, second you give ED the signal that relaxing is possible and you are a weak person (sorry, I do not mean that you really are). You must think about it like bringing up a young dog. You need to be strict and follow the rules, no matter what happens. If you let out the leash, he is gone.
The next holiday or festive time you will be prepared and for example take food out of the fridge for her with you.
Now you are back home and refeeding goes on. Be aware that she might exercise at home and try to close the holes in the net. You will get that. It is difficult, but you can do that.
Tina72
beeessbee

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Reply with quote  #14 
Thank you tina72
Yes I see what you mean about having learnt something. Will take this lesson on board for sure. 
tina72

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Reply with quote  #15 
Ask whatever you need, there are always nice parents from all over the world here 24/7.
Where do you live? I ask that because it is easier to help you because the health systems are so different...
Tina72
yellowcaty

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Reply with quote  #16 
Hi beeessbee
I am sorry that you and your family are going through this as well, but it is good to hear from someone in a similar position. We are about 10 weeks in and she has gained and lost several times. Our biggest loss was close to 2kg. Sometimes when we feel like she has eaten well she will lose and also the other way round. I have learnt quickly that you can't trust ED. If you don't mind me asking, where are you from and how old is your D?
We have started getting back on the meal plan today. Dinner has just taken 40 minutes and she has started biting the food in to smallish pieces and then just swallowing. This is a new thing and I'm not sure as to why?
My H and I have decided to put the last 2 weeks behind us and start again. I got upset at the clinic today at the reality of her losing more weight. I am just glad that I have found this forum for support.
beeessbee

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Reply with quote  #17 
I live in the UK. My D is under the care of the ED team at our local CAMHS. 
beeessbee

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Reply with quote  #18 
Hi yellowcaty
We live in the UK and my D is 15 yrs old. Thanks for your post. I also got very upset at the clinic today. But it is also reassuring to know that these gains and losses do happen. I am very glad to have found this forum as well. 
 - beeessbee
Foodsupport_AUS

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Reply with quote  #19 
Welcome beeessbee.
ED is very sneaky and will take all opportunities to try to derail any plan for weight gain. Early on in this illness we cannot expect our children to in any way support weight gain. Their entire thoughts are around trying to stop it. ED thrives on isolation. Not telling about the illness is one such ploy. Family should know, as should teachers and close friends. If you would mention cancer to someone, then ED should be mentioned to them too. Unfortunately that means the entire burden of refeeding early in the illness falls on us the parents. If we are unable to do this, if ED is too strong and our children are unable to eat despite our best efforts then hospitalisation may well be the best way forward. Fluctuations in weight often mean that there may be gaps happening, things such as water loading may also be coming into play. If there is a gain next week don't be put off and think there is no need for further increases. Keep on increasing until there is gain every week.

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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.
Torie

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Reply with quote  #20 
Yellowcaty and beeessbee - The early days are so hard.  One thing that adds difficulty is that it's really hard (impossible, actually) to understand what's going on in an AN mind.  

It took me a long time to internalize or even believe this, but they just are incapable of rational thought about food, eating, calories, size, shape, weight, anything AN related.  End of.  And yet, we have to find the magic path that gets the food in - in most cases with inadequate or even counter productive "help."  Ugh.

One day at a time.  One meal at a time.  Set your sights on getting the calories in and focus on that like a laser.  That's the ticket to getting your kid back.

Keep swimming.  We're with you in spirit. xx

-Torie

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

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Reply with quote  #21 
Hi
Thank you for all the support and advice. Woke up this morning ready to take ED on again. Breakfast eaten despite reluctance.

She is still swallowing without chewing. I have tried to search as to find out why, but can't see anything that suggests why. Has anyone had any experience of this?? I don't know whether to stop her or not.
beeessbee

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Reply with quote  #22 
Thanks you for the support and advice. Every meal time yesterday was a battle but most of it was eaten. This morning she has gone back to school but am very worried. There are support systems in place (staff to supervise her morning snack and lunch), but can't help worrying. 

yellowcaty - do you think that by not chewing her food your D thinks that perhaps she won't absorb as many calories? I don't know if that is actually true but certainly digestion and absorption of nutrients does start in the mouth (chewing allows saliva and the enzymes in there to start breaking down carbs etc).


tina72

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Reply with quote  #23 
Hi yellowcaty,
swallowing without chewing is an ED behaviour and ED behaviour should be stopped.
She will get stomach hurt by not chewing well. Some kids here needed to be told to chew and to swallow because they did not do this on their own. Your d might need help to be told to chew.
So please try to stop her by telling her that chewing is needed for digestion and that she will get much pain in her stomach if she doesn´t chew. If that doesn´t work, think about puree the food for some time so chewing is not needed. Maybe it is enough to tell her that you will puree it when she doesn´t chew? Or that she will need to eat something extra if she doesn´t chew well?
ED behaviour must have consequences if you want to stop it. The earlier you stop new ED behaviour, the better.
Like the others said, try to add as much calories as possible until you see a steady weight gain. That will be much more than you expect now. I add cream and canola oil to nearly everything possible until today.
Tina72
yellowcaty

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Reply with quote  #24 
Tina72
Thank you. I will tackle it at the next meal. She is used to Forticip which she obviously doesn't need to chew, but this is a new behaviour that she seems to have engaged in. I noticed it at dinner last night where she was required to eat much more than before.

Beeessbee

Hi. My D doesn't start back to school until Monday, but I am already anxious. She was kept off school last half term by CAMHS. They did allow her back on a phased return during the last couple of weeks, but she only did a few half days. They did this because of her low weight and how quickly she had lost. School were really good and supervised eating. She is in Sixth Form so I initially thought this might be more of a problem.

Just see how school goes. My D is sixteen and school sent work home for her. She managed to keep up, but it did mean that I was here for eating. I'm supposed to be going back to work next Friday and I'm not sure how things will go then.

Try to make some time for yourself today whilst she is in school.
beeessbee

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Reply with quote  #25 
Hi yellowcaty

Thanks for the reassurance. If it comes to it I'm sure school will send work for my D too. Yes going back to work is problematic. What did you do when your D was kept off school? I have a few plans in place (work have been very flexible about it) but not sure how well that will work. I did make some time for myself today - she may well be off from tomorrow depending on how things went today. The staff involved have promised to report back.
Beeessbee
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