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

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bonny
I have just found this forum and I am so impressed with the level of knowledge and practical advice and I hope that you can help me too!

ur 15 year old son was diagnosed a couple of months ago with Anorexia (came on v quickly over 5/6 months) He was admitted to hospital for 5 days because of a v low HR (30) and BP - was at risk of sudden death, which was very scary.
He was only just on the cusp of being underweight for his height at 59kg, but his healthy weight previously had been around 78kg. He is a footballer and trains/plays a lot each week.

He gained weight well (I was adding loads of extra fats to his 3000 calorie plan) and 2 weeks ago he weighed 69.6kg (6 foot tall) and was adamant that he did not want to get heavier (was already missing snacks and not finishing meals) so the doctor put him onto a Weight Maintenance Plan and said he could go back to normal training/football.

On Friday's weigh-in he had lost 2kg in a week partly because he was refusing snacks/meals even on the Maintenance Plan, but also because the Maintenance Plan was clearly nowhere near enough food for him. So the doctor very slightly upped it and banned all sport. We are going back today and I fully expect him to have lost weight again.

We are at the Maudsley, following the Maudsley Family Therapy programme, but having read some of the advice on here, I am very worried that the doctor is not giving us the right advice/him the right message.

How do I get her to say that he needs to be back on a Weight Gaining plan without making it look to my son like I am telling her her job? He is very opposed to gaining any weight, but it is clearly obvious that his thinking is becoming more and more "anorexic" as he is not getting enough calories, never mind the weight loss.

And how do I get him to eat when he flatly refuses?
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OneToughMomma
Welcome, bonny!  And you've asked the million dollar question. Don't we all wish we knew a simple, quick answer?

Here is a link to the Hall of Fame section dealing with getting a stubborn anorexic to eat. Why don't you have a look and see if anything speaks to you?

You were very wise to add extra calories to his meals.  I think most of us have found that very effective.

As to getting him to eat, you just have to be more stubborn than his anorexia. 

We found that we had to make food the most important thing in our house.  So, you can leave for school AFTER a good breakfast.  You can watch TV, have your phone, leave the table AFTER you have eaten.  Everything went on hold until until our d was properly nourished at each meal.  She was late to school and missed out on parties. If she left the table I followed her with food. I sat outside her door or on her bed holding plates. When she broke dishes or poured food on the floor I dished up again.  I just would not give up the war.  We lost plenty of battles, but aimed to win the war.

Your treatment team does seem a bit confused and confusing.  I didn't know there was such a thing as a 'maintenance plan' under Maudsley.  A 6 foot tall 15 year old boy would, I imagine, need a massive number of calories just to keep that body functioning, much less repair the damage done and keep building towards maturity (young adults should continue to gain weight until their 20's--have a look at average growth charts). 

If it were me, I would stick with the 'no sport' rule for as absolutely long as possible (it gets easier--my d begged to work out and run, but shows no interest now that she is well).  I would read and watch videos about how to get him to eat, and I would go back/continue adding to his plan. 

How do you think you could best go forward with the doctor?  Is she worth educating or should you just try to minimize the damage she does?


Keep asking questions.  You are doing great.

xoOTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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bonny
ToothFairy,

our sessions are always "family sessions" so my son and I are in there together (with his dad/my husband when he can get out of work) - that is what is making it difficult to talk candidly. I am worried that if I try to put my views, he will see me as the enemy, trying to fatten him up. However, I can talk about the increase in resistance and disordered thinking infront of him, which I will. And I will ask whether she thinks he is ready to be taking this level of responsibility for his eating (constantly checking the meal plan/me weighing his food) or whether it would be better if we go back to him not seeing the meal plan at all and just trying to eat what I give him. I will also ask whether the dietician has designed a plan for him to eat enough to maintain when he is doing sport, as the current one isn't even enough to keep him going whilst sitting on the sofa all day!

And yes, this is actually a clinic at the Maudsley! I think the doctor is very nice but young and new to this. My son needs a much more assertive approach. The two senior practitioners must be advising her, but I wish we were seeing one of them directly.

Momma, thanks for that advice - maybe we need to be tougher, but it is very difficult to keep a big 15yo boy at the table and if we ban other stuff until he has eaten, he will just lay on his bed getting more depressed, but we can try. We have done the following him round with plates, etc, but maybe we need to keep doing it. I actually have that book - I read it when he was initially diagnosed, but will go back to it again for more clues. And watch the videos.

Whilst he was definitely over-exercising in the summer, football is what makes him tick - he is not only doing it to lose weight, he has played all his life and it is really his only hobby. He gains a lot of self-worth from it, is much happier and it means he is interacting with his peers out of school. Whilst he has good friends at school, he has not really socialised for 6 months - he just does not feel up to it. Part of the reason is that he does not want to have to eat/drink with them. Football does not involve food. But if he can't cope with doing it because of his ED, then it will have to go on hold. I just don't know what will fill it's place - he is not a gamer and there's a limit to how much TV/YouTube, etc he wants to watch.

Thanks for your responses - I am really grateful.
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bonny
ToothFairy, 

I am sure that the Maudsley are good, it just feels a bit wobbly at the moment with our doc.

Sport is being used for leverage. But it is also hugely important to him. It really is who he is. 

I am going to try to get a quick word, hopefully I can ask whilst he is looking away so that the doc says it to him, rather than me asking!

Thanks for the link - will look now.
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mjkz
Bonny, it is also fairly well known that weight recovered restricting anorexics need more calories to maintain their weight than you would think. Here is a link to a study that discusses that.  I was always surprised that my daughter needed such a high calorie level even without exercise to maintain her weight. Most maintenance diets are simply too few calories.

https://www.ncbi.nlm.nih.gov/pubmed/1957930

If you can't ask the doc what you need to in front of your son, maybe ask if you can talk to the doc privately first and then have your son join you. 

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I am worried that if I try to put my views, he will see me as the enemy, trying to fatten him up.


He may think that anyway with his "anorexic mind".  Getting weight on him and keeping it on him will help solve that thinking so while he may think that in the short run, it might be worth it simply to keep him weight restored and let brain healing occur (congrats by the way on getting him weight restored!!!).

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But if he can't cope with doing it because of his ED, then it will have to go on hold. I just don't know what will fill it's place - he is not a gamer and there's a limit to how much TV/YouTube, etc he wants to watch.


My daughter was not one who wanted to socialize either so I would invite a few friends over to do things like watch a movie or watch a football game (not her but might work for your son).  Doing things at home in smaller groups without food involved may help your son with his socializing and also help him stay connected to his friends in ways that don't involve food. 
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bonny
So update is that I managed to speaK to the doc on my own and give her the heads up.
My son appeared to have gained 1/2 a kg in 4 days on weigh-in.

It was a long meeting with the doc trying to get my son to explain his thinking, etc. He was very flat but when she said she was giving me a new meal plan and that he's not allowed to see it but has to trust me, he got v anxious and angry. We agreed that he could get back to PE tomorrow if he starts following the plan.

I knew he would find it very hard - he wouldn't eat all his main course (exactly same as previously) refused juice (was water previously) and refused sponge pud and custard (I had rearranged stuff so he could have this and so not have afternoon snack (which he has never eaten) and food with hot choc for supper.

He got v angry and left the table despite me and his sister remaining calm and encouraging. He wanted to check the meal plan.

Do you think I should just stick exactly to the meal plan? I was trying to make it easier and more normal for him.

I did not push it because I felt he needed some time to take in that he has to give up control of the plan, but I will try to follow him up to his room and continue encouraging him in future.
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bonny
Also, he did not eat the plan so we should stick with no pe tomorrow even though it wI'll cause major rucroons?
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OneToughMomma
Bomny,

You and the doctor said no PE if he didn't eat, and he didn't eat. So now there's no PE. It's not your choice: it's a natural consequence of not eating enough.

For two reasons. Firstly, he does not have enough nourishment to safely participate. Moving that large frame up and down a field or a gym requires an enormous amount of energy, and he will not be safely able to participate. Remember that earlier this year he was in hospital with cardiac issues.

Secondly, and most importantly, if you give in now how will you ever get him to eat? When you say something in future it will be an empty threat and he will not listen to you. His ED will know you don't follow through.

I know it's hard. I've been through this. My d isn't 6 feet tall but she was strong and driven mad by her ED. She would argue, scream and kick for hours and hours. We had to call the police twice to keep us safe.

It's not fair that you have to do this, but right now your son needs you to be stronger than his ED.

xoOTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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bonny
Thanks for the advice!

I agree, we will stick slavishly to the plan despite the doc saying that I could rejig things a bit as long as overall same amount of food. 

And I know you are right Momma [smile]

I can see it being a very hard week!
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Foodsupport_AUS
Bonny you can adjust the plan. Just don't do it because ED says so. So if you think that he finds breakfast or his afternoon snack easier you can add extra food there and move it from the more difficult meals. As you have said he seems to need to be gaining and more to the point almost certainly needs to get back to the weight he was prior to illness. What you won't get is his agreement about this. 
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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bonny
Foodsupport, that was exactly what I was doing. As the doc said was OK to do. But I think I will just stick to the plan as is for this week now and then we can see how difficult he finds it and he might then see that it would be better to rejig. The doc said we were in SafeUncertainty, I think?!
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AUSSIEedfamily
Dear Bonny,

One of the ways that helps is to separate our real child from the disease impacting on them. They are typically in a starvation type of health status & one of the things that happens with a starved brain is it does not work correctly or rationally.

Many here view the ED as separate from their child & view it as a terrorist. I learnt to view it as a negative mind

Food Is Medicine for a starved person & lots of it. For a growing young boy heaps of food.

It surprises me that the maudsley is not pushing the "Food Is Medicine" mantra although as you point out it may be this young doctors inexperience. The ED might be trying to pick this inexperience out & try to have its rule over the doctor.

The F.E.A.S.T resuorces pages have very good info especially the 4 (four) parent guide booklets.

This comment in your post kind of gives me an indication that it was the ED part of your son in this session & the ED got anxious & angry as it knew it was being challenged.

It was a long meeting with the doc trying to get my son to explain his thinking, etc. He was very flat but when she said she was giving me a new meal plan and that he's not allowed to see it but has to trust me, he got v anxious and angry. We agreed that he could get back to PE tomorrow if he starts following the plan.




ED Dad
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bonny
Yes Aussie, they have used the Food is Medicine phrase and we use it too! The doctor isn't doing anything wrong, it's just that my son is a very strong character and is used to coaches, etc saying how it is. I think he finds it more difficult to interpret her gentle leading him to think something as "you need to start thinking like this" - we know there are no definites, but he needs assertiveness and getting to the point and labouring the point, rather than beating around the bush IYSWIM!


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mjkz
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but he needs assertiveness and getting to the point and labouring the point, rather than beating around the bush IYSWIM!


That is where you come in.  You are his coach and the doc is just a guide.  It sounds like he is struggling but adjust the plan as you need it too.  He is going to struggle no matter what so you might as well do what you need to in order to get him to eat.  Losing control of things is no fun for anyone but it is the only way through.  It sounds like you have a good team!!!

Definitely no PE though.  You may have to keep changing the meal plan to keep it so he doesn't know as that is the whole point.  He has to get used to not knowing and learning how to deal with that uncertainty at home with his coach is the best place to learn it.
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bonny
Yes, DH and I are agreed on no PE tomorrow.

That is an interesting point re the meal plan. He likes it to be the same as much as possible, but I think you are right. It will be difficult, but we will try.
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mamabear
Hi Bonny,

I'm going to try to put my thoughts into a coherent post. My heads kind of all over the place right now after reading this thread. I hope this helps you. It may be hard to read some of this but it's my truth. I hurt for your family.

One thing stuck out at me. You said his whole life is sports and that is "who he is". After reading this thread I keep thinking " Sports is not his life, anorexia is."
I think the team is failing him.

My husband is a doctor and I have my bachelors in nursing. I tell you this to show that this is not about education. Some professionals in the ED world are better than others. We had to battle with many providers to fight for what we felt in our guts was right. My daughter was TEN years old when sick and for those first 3 years she needed VERY high fats and calories And she's not the only one. Many people have had kids who need 4000-6000 for years. Your son is not ready for exercise and sports. Your real son knows deep down inside that his body needs fuel for sports but his ED is VERY LOUD right now which is indicated by all of his behaviors. He is hungry. His ED is keeping him prisoner 25/7. You may think sports give him confidence and an outlet etc but he may be just tortured by the mean voice that never leaves his head right now. My daughter couldn't sit or sleep for months and later talked about how her eating disordered thoughts told her she was lazy and needed to always be burning off calories etc. She later was able to tell us of how relieved she was when finally made to stop moving and stop exercise because her body ached. It HURTS to have this illness. This eating disorder is in control right now. If he is not eating what is necessary to gain then he needs more food and calories. I wouldn't involve him in anything to do with the food right now. It sounds like it increases his anxiety greatly.

This is hell. It just is. But it can and does improve with weight gain as the brain and body heal. I lived this. I'm six years in. It took 3 years to get back to complete normal. And ED will make him fight like hell and try to wear you down. You have to stop trying to make this easier for him and make it harder for ED. That's how you break it down.

You can do this. Demand therapy time without him present. He is a minor. You have the power now. You love him. Do what you need to do. And if he needs to go to a higher level of care that is not failure. His ED is strong right now. You have to be stronger.

This is war for his life. Nothing is more important. Food is his medicine.
Persistent, consistent vigilance!
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Kali
Hi Bonny,

So sorry you are going through this with your s. This is a most horrible illness. I am impressed by how much weight you have already been able to help him to gain. [smile] When you meet resistance you know you are challenging the ED. Keep going!

Have you considered adding benecalorie to his food while he is being refed? It is a colorless, tasteless, odorless liquid with protein and some fat, vitamin c and calcium and zinc and a couple of other things. A small container adds 330 calories to anything you can put it in. He doesn't need to know.
It can be added to sauces and your s. will not be able to taste it. It can be ordered online and you can also look up some recipes. It is made by Nestle. So the footprint (amount) of food will stay the same but will have more calories.
 
Also look up the smoothie recipes on this site and try to get your son into the habit of having smoothies in the morning with breakfast. 

Here is ours:
Full fat vanilla yoghurt
Honey
Heavy Cream
a dash of vanilla extract
some full fat milk
a banana
some strawberries
a couple of ice cubes

My d. also had an exercise compulsion. Running, exercising in her room at night, etc. IMHO they are not doing it because they love sports. They are doing it because it is a compulsion and a way of purging calories and they cannot stop themselves.

She is no longer allowed to run or exercise or participate in sports. AT ALL. The dr. told her that and we have been vigilant. 

You are right to keep him out of sports and pe.

Kali
Food=Love
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BattyMatty_UK
Hi Bonny, my son was 15 when he began to show signs of anorexia (he is now nearly 23 and recovered). You might find my blog helpful - I began it in early 2011 just a year after my son began treatment. I've put the blog posts into PDF format to make it easier to read through (less clicking, more linear!!) so please do take a look. We weren't fortunate enough to be offered the Maudsley Method, but you may find many overlaps between your experience and ours (e.g. exercise addiction and how we finally conquered it). Plus, I hope that the fact that my son is now recovered shows that there is light at the end of the tunnel.
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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bonny
Thanks for all the input - smoothies are a great idea, will give it a go.

BattyMatty, I have read your blog - really similar to my son! And really inspiring to see that he is now recovered, like so many of you posting on here.

I am not sure that my son has an exercise compulsion - he doesn't try to exercise outside of football training/matches, but maybe that doesn't mean that he hasn't got a compulsion? How do you know if they do have a compulsion? 


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mamabear
It's not about a compulsion. Your son sounds like he is not healthy enough to participate. If he is unwilling to eat what needs to be eaten to gain then his body doesn't have what it needs. Many have used sport as a " carrot" in that only healthy people play sports. Only people who give their body what it needs play sports. He needs to be cooperative and Willing to do what it takes. " Normal " athletes eat a ton of food. Interestingly also, many have found once solid weight has gone on and brain healing has kicked in, their child does not want to go back to the sport.

When my d did play basketball, she knew that there would be more food. Part of the deal. Period. She didn't eat,she didn't play.
Persistent, consistent vigilance!
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bonny
OK I get what you mean. 

So would you only let your child do their sport if they had eaten literally everything on their meal plan? 

My son gets into a very low mood when he isn't playing any football at all. He doesn't argue about it, he accepts that we/the doctor think he isn't eating enough to do it. He becomes very quiet and depressed and it doesn't motivate him to eat more - he just says there is no point to life, etc. It is very hard to see.

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melstevUK
bonny,

So glad you found the forum early on.  

You cannot assume that the doctor your son is under is a fully qualified psychiatrist - it my be someone in their first year of training.

What is clear is that your s is not going to be anywhere near being recovered until he is right back at the weight at which he started becoming ill - and he probably needs to be above that weight now as more time has gone by.

If only these clinicians would not compromise or think it makes things easier by keeping the patient at too low a weight! - which makes me think this doctor has very little experience and could well have been 'thrown in at the deep end' because everyone is so short of doctors and trainees are given positions everywhere.

If your s objects about gaining weight - tell him in no uncertain terms that there is no recovery without weight gain and you are not going to stand by leaving him ill for years - so he needs to accept now that he needs to be right back up at the right weight for him which is way higher than his 70 kgs.  Patients get very stuck on numbers and very scared going above a certain figure they may have in their head - and they have to be pushed through that fear.  You can also tell him that at the moment he cannot assess what his weight needs to be and how much he needs to eat - because that is part of the illness, which is not his fault and not of his making.  But this is how it is and this is why he needs to trust you - scary as it all feels.  If you can make the statement away from a meal time, and in as unemotional factual way as possible, and keep drip feeding the message, it may help with his anxiety levels.

Sometimes it can be helpful to up front about how things are - you need his cooperation, but it is no bad thing to remind him that this is an illness, even if he does not feel that he is ill.  Not being aware you are ill is one of the main features - which is why eds are such hellish things to treat.
Believe you can and you're halfway there.
Theodore Roosevelt.
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bonny
Totally agree. The problem is, and must be for all anorexics(?) that he does not want to get heavier/fatter/whatever and thinks he is fine (well within BMI range, but I know that is flawed)

The doctor may well be still in training although she has the title of doctor. 

Perhaps I should direct her to this site!

Seriously though, if she isn't pushing him for weight gain (she is pushing for him to eat more because of anorexic thinking), then how do we get him to see what you are saying? He is nearly 16 and like most teens knows his own mind. We have been pushing him for nearly 2 months, and he has gained weight well in that time, but now feels he is at the right weight for him. 

I don't think we will get the chance to change to or even maybe see a more experienced practitioner, although we are taking part in a multi-family programme in a couple of weeks so there are likely to be more experienced therapists leading that, surely?
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EC_Mom
Bonny, if you look around this site you will see that LOTS of people have had "experienced", supposed "expert" practitioners say things that are wrong, unhelpful and even detrimental. I fired a few pediatricians along the way, I think Mamabear took a kid out of a hospital against medical advice.

YOU are the expert, truly. This forum knows more than any single expert (even the good ones) that we have talked to. Time to stop being deferential to any doctor; you are the boss and they are consultants, whom you may override. (That advice was so helpful when I got it back in the trenches of refeeding!)

Meal plan, shmeal plan. You feed your kid what he needs, which is tons of calories and fats. It's YOUR meal plan, except maybe not even a "plan" because then patients get the idea that there are measurements and numbers, which they get obsessed with. My kid asked, "How many cups of milk are in that oatmeal?" and I would truthfully answer, "I have no idea, I don't measure. It's just what you need."

The scary part is that they DO get more anxious and depressed the more you take over and don't led ED rule. It does tend to get worse for awhile, at least in my experience. But then it gets better once they have achieved full nutrition and weight restoration...which you will only know you have reached when they start acting more normal and resisting less. The STATE of the child is the guide for when to slowly normalize feeding. And a getting-back-to-health child will resist less and start expressing hunger, desire for food, and so on. S L O W L Y.

Keep asking, and don't be overly influenced by doctors whom you don't think are seeing the whole picture.
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bonny
OK, so at the moment he is still leaving/refusing quite a bit of food. The first hurdle is to get him eating all that, right? Rather than piling his plate even higher?

And he HATES snacks, particularly the afternoon one. 

It sounds easy to make him eat everything, but in practice, this is not going to happen overnight (as I am sure was the same for all your children) or even in a week or two. That's why it has taken lots of the children on here 2/3 years or more to be recovered?
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