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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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nicolas
Hi all
First of all, I am hugely relieved to discover this forum which I found after reading Eva Musby's brilliant book. We live in the north of England and have a 10 year boy who was diagnosed with AN 4 weeks ago.  His weight loss was gradual at first but then sudden and sadly went undetected by us for some time until it became very obvious.  We are now getting support from the ED team at our local CAMHS and have met with a specialist three times. She has agreed a meal plan with us  which amounts to around 1400 calories per day.  The plan was to take it slowly but the last time he was weighed, he had actually lost more weight. He now weighs 28.7 kg and is 141 cm in height. Reading some of the other posts about 10 year olds, it seems that this is very underweight and he should be on a much higher calorie refeeding plan. We meet with CAMHS again this Friday and I am wondering if I need to push for a more intense approach or for a referral to a psychiatrist. My son is severely stressed by eating anything he thinks is calorific and I originally thought that this step by step, gradual approach would be preferable. However, after reading some of the posts in this forum I am now wondering whether this is the case.  
Any advice or thoughts/suggestions/information would be fantastic. 
Many thanks. 
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rose08
Hi Nicolas
I am sure you will get lots of good advice and support from this forum, it really helped us so much especially in the early days of new and frightening diagnosis. My daughter was 11 at the onset of her anorexia  (she is now 12) and we are 8 months into the process.  We too were told to start gradually, however after another 2kg weight loss in two weeks (under the care of our GP) on a starter plan, we rapidly had to change our approach to the illness as her stats were dangerously low by then.  Each child reacts differently, however in our case in the beginning it was sheer terror and bedlam at the thought of eating even just a slice of toast.  However, my belief is without adequate nutrition, there can be no recovery, it really is key and often the calories required are much, much higher than the "typical" child would need - this has evened out for us, but in the beginning nothing less than 2800 to 3000 calories per day brought about weight gain.  A good therapist is helpful and medication can sometimes assist, especially if there are underlying issues such as anxiety, OCD, but often these will lessen if brought about by the anorexia and once weight restoration is near or achieved.  
My advice is start with a small "footprint" that packs the highest possible calories. i.e. Smoothies (made with full fat yougert, double cream, banana, nuts etc), also one breakfast muffin  (made with ground up nuts, honey, yogurt, eggs, butter, blueberries etc) can be less intimidating than 2 slices of toast, eggs and bacon etc but pack the same amount of nutrition.  Find what works, aim for 3 meals, 3 snacks and if possible a smoothie or two.  I know it must sound like so much - and I wont lie, it can be very, very difficult at the start but it will help, and it does get easier. Best Regards from South Africa, Rose    
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Foodsupport_AUS
Welcome to the forum, sorry that you have had to find your way here. 

What you are experiencing is truly normal, as disheartening as that is. Many parents have reported that they have been told to underfeed their child, it seems that even the "experts" are often unaware of how much food it takes to refeed someone with anorexia. Have you read these booklets?  http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartA_Nov_2017.pdf http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartB_Nov_2017..pdf

His fear is normal, have a watch of this video
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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nicolas
Thank you so much for the advice rose08 and Foodsupport_Aus.  I have just printed off both of the CEED documents and am already finding them useful.  The idea of keeping the food footprint low and the calorie intake high makes a lot of sense. Tonight he was extremely distressed - screaming, shouting, spitting etc. and it was over a small hot chocolate with about 150 calories. So he is suffering so much anyway and yet not even getting the calories he needs.   
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tammy
Hi Nicolas. We have an eight year old boy who was diagnosed in August. We did not get specialised ED help for first ten to twelve weeks as limited resources in our area. I used a lot of tips from Eva Musby books and videos and from this forum and started re feeding ourselves. We had major tantrums, self harm, lashing out at us etc.
He was 29.1kg and 138cm at first and is now 140cm and 33kg in weight. We have seen an improvement in behaviours but still have very challenging days. We add cream, butter full fat milk to everything. Our saving grace was that we managed to get him in to full fat milk early on and he drinks about three to four pints of it a day plus drinks lots of yoghurt drinks.
I wish at the start I had been stronger and resisted him dictating the size of meals as we are stuck trying to fit as much food as I can into a small side plate as anything else freaks him out. Now that we have him at a healthier weight I am not going to give up and will continue pushing the calories.
Try to break ED behaviours early in when tantrums are still bad as you are living the nightmare anyway. It does get easier but you have to have the patience of a saint. Compassion and separating ED from child are what has helped us most. Also letting them see that we have to keep them safe and if they don't eat we can't let them go anything else but rest afterwards . Good luck. It does get gradually better.
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rose08
Hi Nicolas
I'm sorry to hear the hot chocolate went badly, however when you are getting such a strong reaction it does mean you meeting the Anorexia head on. It probably doesn't seem like it but that is where good progress is made. Keep going, food is medicine. Like Tammy said, breaking the ED behaviours early on can really move the process along - however each family finds what works for them. It is early days still, and you are doing well. Best Regards, Rose
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Mamaroo
Hi Nicolas

Sorry to hear about your son. All the posters have given you great advice. It will take some time before the meal plan is followed completely. It took us 7 weeks..... just make sure he is eating more and more each day. As for the hot chocolate, there are 2 schools of thought. One is that all food, including fear food, be served from day 1, the other is that highly palatable food such as chocolate, chips etc. be avoided until WR. When we say WR, we mean they are back at their historical curve, they obviously still need to gain while growing, just not at the high pace. Here is more information about highly palatable foods: https://www.kartiniclinic.com/blog/post/why-we-limit-hyper-palatable-foods-for-one-year/
We followed the last approach, since all food were fear food and she was refed for months on ensures only. Today she eats ice cream, chocolates, sweets and chips without a problem.

Sending you lots of best wishes!!
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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ValentinaGermania
Hi nicolas,
a very warm welcome from Germany. You have been already given great advice. 1400 calories is way too low, you will not see any weight gain below at least 2500 calories a day.
Fear food: there are two ways, you can try to add it from day one, but we did not do it, we pushed her to WR with food she could accept and then added one fear food a week and that was o.k. for us, but every patient and every family is different. At the moment I would set the target on eating proper amounts 3 meals 3 snacks and weight gain is the most important now, so if he doesn´t drink chocolate milk try to give him a "healthy looking" smoothie (400 ml fruits and juice and add up to 100 ml canola oil, that doesn´t smell or taste and will give you more than 500 calories extra with one drink).
Try to do small footprints and make every meal or snack count. You will have theses fights anyway so better leave your energy for 400 than for 150 calories.
If he has some safe food, try to serve that and make it heavier adding secretly butter, oil or cream to it (better double-cream).
His brain needs a lot of fat to recover.
"I am wondering if I need to push for a more intense approach or for a referral to a psychiatrist."
As his behaviour is quite normal for ED I think you can try to get some help from a psychiatrist, but if not that is no great harm because all his behaviour will get a lot better when ED sees you mean it seriously and when he gains some weight.
Our d did the same things as your son now (and she was 17 at that time) and it just faded away with refeeding, as Rose said. So keep on going, you are doing the right thing. Get into him as much as you can.
It is hard with FBT at the beginning because you are feeling alone and anxious and it is a bit like re-inventing the wheel but the idea is to give you some power back. When you figured out how to refeed him that will give you that power that you think whatever happens, I know what to do. I can do that.

Get some help from family or friends if possible.
Tina72


Keep feeding. There is light at the end of the tunnel.
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Torie
nicolas wrote:
Tonight he was extremely distressed - screaming, shouting, spitting etc. and it was over a small hot chocolate with about 150 calories. So he is suffering so much anyway and yet not even getting the calories he needs.   


That's it, exactly.  He's going through hell; you're going through hell; and like Winston Churchill said, when you're going through hell, keep going.  And, I would add, go as fast as you can.

I was surprised to learn (here one the forum) that you can add rapeseed oil (canola in the US) to everything from smoothies and yogurt to soup and pasta.  It disappears without changing the flavor and texture if you don't go too, too overboard with the amount, and stir it in vigorously. 

Your s is very young, and should not be participating in meal planning, preparation, shopping, or serving.  (I don't know if he is or isn't - I'm just saying.)  His only job is to eat.  Most here find it best to keep them away from the grocery store and out of the kitchen while food is being prepared.

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

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Linedupandwaiting
Nicolas, Sorry you've had to search out help for this but glad you found this forum. It was life saver for us 7 yrs ago when our 10 yr old S developed anorexia. One thing you learn quickly, is that the CAMHS "experts" don't necessarily have all the answers, so you are right to question calorific intake for instance. I would say you're also relatively lucky that your S is at a stage where you CAN control his food intake and to an extent, pull the wool over his eyes by feeding him more than he thinks. We certainly had to do that and our S is now well and in first yr at Uni.
To start with, eating with your S can help, but be careful you don't take in too many excess calories yourself, if you can. In order to achieve that, you need some tricks, for instance, we bought gold top milk for our S and green top for ourselves. He liked the taste and, as a 10 yr old, didn't realise there was a big difference in calorific content. We ate a lot of "light" desserts such as "Angel Delight". I bought the low calorie version for the adults and the higher calorie version for him, with his being made up with full fat milk and ours with semi-skimmed. Then I found foods my son specially likes e.g. strawberries. His were sliced into small pieces (to give a big surface area) which I covered with sugar and left for a while, in order to allow the sugar granules to dissolve and disappear into the strawberries and leave no visible trace of the sugar (which was important because it was important not to get caught!) I also bought plain white dishes in slightly different sizes and was able to give him slightly bigger portions than we had, without him noticing. The same for drinking glasses. On the topic of drinking, we found that our son liked milk shakes and I got a brand from the chemists which was for building up people who had been ill (I can't remember the name, but it was very calorific). You will of course need to find your own tricks and foods he will tolerate and think of ways of bumping up the calories. Chocolate is a great way of getting extra calories in, if he will tolerate it - even shavings on top of Angel Delight (can't stand the stuff now - we ate so much of it!!). Chocolate was one thing that, for a while, my S couldn't resist and it did help in our fight against ED. It all took a lot of effort and a fair bit of deviousness. I don't feel remotely guilty about being devious because it was to save my S's life and in any case, this illness is about the most devious enemy you'll ever have to fight (as you probably know by now).
On the behaviour side of things, try to separate out your son's personality and behaviours from the "anorexic" ones. This will help you to deal with things as you will be able to say that any uncharacteristic bad behaviour is not really him, but the monster inside him you are trying to deal with. We made our S sit at the table until he ate his food - sometimes it took HOURS but we stuck with it. Then, we had to prevent him going to the bathroom for an hour or so afterwards (to prevent purging) or else accompany him - it's not nice, but you can do that at age 10.
You will get lots of good balanced opinion on the forum, from people who have been through the experience you're going through (& come out the other side) - any time of day or night.
Wishing you didn't have to learn all this stuff, but we're all supporting you and there is light at the end of the tunnel.
Eternally hopeful
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nicolas
Thank you so much to all of you who have taken the time to share your experience and offer so much helpful advice and kindness.  Your comments gave me the confidence to contact our ED team to discuss increasing my son's calorie intake immediately.  We've agreed an increase to 2000 for one week and then an increase to 3000 within the next week to 10 days. Muffins are now cooking (from the CEED recipe book) and we have small footprint/high calorie plan for tomorrow.  It's going to be tough but it is very reassuring to be part of this forum now - thank you. 
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