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

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Scarlett81
Hi,

My 15 yr old s, diagnosed 3 weeks ago, is now managing 2000 calories a day, but the process is the most terrifying thing I have seen.  It is taking 45mins to an hour to get him to sit up and look at the food, then this internal torment begins.  He cries, screams like he is being tortured... he says he is being poisoned and can't face the pain any longer. Then he becomes almost delirious... I hear the internal struggle coming out and he psyches himself up. "I can't do it... but I have to... I don't want to... but I need to"  with quiet encouragement he finally eats but every mouthful is torture and he screams and sobs through the meal.  Then there is 30 minutes of sobbing afterwards.... the last two days have been just 24 hours of pain, fear and crying.  Is this usual for early days and low weight?  I am considering asking about medication because I hate to see him in such pain.  What are your thoughts?

I know much of this will be down to low body weight and ideally I would be ramping up the calories.  But he's so terrified of eating that I've stuck to familiar choices so far. My gut says that tackling fear foods is not the right thing just yet.  But then how do I get the calories in?!  Already doing butter in pasta, oil in tomato Passata, hidden grated cheese in there too... but the rest of his food items are dry and it's hard to get more in.  I'm adding milk and a milk powder to his coffee. . What else can I do to feed his brain?

Wow, this is a tough illness to have.  My heart goes out to these kids, they are so brave!
Xx
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Ellesmum
Hi Scarlett, 
this is horribly ‘normal’ for this illness unfortunately but you are doing exactly right by adding oil etc.  It will get better the more food you get in.  Is there anything he’s ‘happy’ (I know) to eat right now that we can help you bulk up in these early toughest days? Or drink? Lots of oven baked food can take olive oil drizzled over it and it doesn’t show when cooked.  Complan if you’re up will go into lots of powdery foods and drinks including coffee. I’d swap to decaff coffee because the caffeine isn’t good for sleep or the heart, same if he has cola, swap to decaffinated.
Ellesmum
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Scarlett81
Thanks Ellesmum.  Yes, we're on decaf.  

Not accepting oven baked yet but I will try the drizzled oil asap!

Drinks, he will have water, decaf coffee, fruit juice, and milk blended with banana.  I'm able to sneak a few oats in there... did I read you can put oil in a smoothie in undetected?? He is suspicious so needs to be tasteless!

Food choices are v basic. Pasta, tomato sauce, tuna, ham sandwiches, bread maker loaves...

I will try anything!!!
Xxx
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Ellesmum
Yes, canola/rapeseed is tasteless and will disappear with a very brisk whisk or blend. It’s astonishing how much you can add to pasta with sauce, I cook pasta as normal, drain, throw in oil and stir so pasta is coated, then add the sauce. You can add a little sugar to juice too, castor sugar dissolves well.  

Does he have any cereals?  The milk and banana should be able to take some double cream which packs a punch.    If my d questioned me I told her tastebuds changed when people don’t eat much variety and sometimes if she really kicked off I’d say the milk or whatever must be off and I’d make a new drink (then make pretty much the same thing 😂) 
Ellesmum
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Elibean1
Hi Scarlett, really painful times....you’ll be needing some good self care, though I know this might feel impossible right now. So traumatic. 

Sounds D’s like you’re doing an amazing job and being exactly the strong mum he needs. Are you in the US? If so, Benecalorie is apparently tasteless and good to add in eg that milk with bananas. 

In the UK, would he notice cream in his banana smoothie/shake? Will he/can he eat peanut butter? 

Re the meds, at this stage my guess is it’s hard to tell if they’d help...if he’s very malnourished, they don’t work as well. But nothing wrong with asking his team what they think. 

Sending stamina and a hug x
Elibean
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tina72
It is totally normal for that state and it stopps slowly after getting him back to a good weight and some time x so getting the weight back on asap is your first target. Try to offer him distraction through the meals, TV was our best friend, watch some silly netflix series together or whatever is available. Do crosswords, play card games, whatever he can concentrate on at the moment.

The pain gets better with every meal and every day and every week, you just need to get through it. I know it is hard to watch this but you cannot help him more than try to distract him and tell him you see his pain and you love him. Try not to engage in all ED talk.

What he needs most is fats, the brain runs on fat and glucose. It is possible to refeed him on safe food as long as he is eating enough. Does he gain?
Put cream in his coffee instead of milk.
Some sugar in his fruit juice. Change diet coke to normal coke in the bottle if he drinks that.
The banana milk shake is a great thing, put cream or ice cream (hagen daz is the most caloric here, compare the brands there) into it and the banana. You can prepare these shakes when he is sleeping and freeze single portions. Make it a routine to drink one every day (tell him the extra calcium is needed for his bones).

Oats and nuts into porridge. Tuna in oil. Tomato sauce can suck a lot of oil into it. Use rapeseed oil, that does not smell and does not taste.
Here is my special fruit smoothie recipe for the blender:
400-450 ml fruit and juice (whatever he likes)
50-100 ml rapeseed oil/canola oil (increase it slowly)
If you get 100 ml into it you have 1000 calories extra with 2x 250 ml drink. Serve it with lunch and dinner instead of fruit juice. Smoothies are "in" and look "healthy" and you can tell him it is needed for extra vitamins at the moment...🙂 The smoothies can go to the freezer, too (the freezer is my best friend).

Keep him out of the kitchen and prepare all that when he is not around or sleeping. He should not see this!
Keep feeding. There is light at the end of the tunnel.
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Scarlett81
Thanks so much! I will try every single one of those!

I'm in the UK.  Gained 1kg at first weigh in, another kg at next, then dropped 500g.  But waiting to see if he has gained next week as it will be 4 weeks.

Will be more than happy to stick a tub of Hagen Daz in the freezer... a bit of self-love there right away!

Thanks folks xxx
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Ellesmum
As you’re UK Complan is sold in Boots and all the supermarkets, ironically with the diet supplements and body building powders.  It’s fairly cheap and comes in original flavour which is tasteless but there are other flavours too.  You can make shakes out of it or add the powder to food and drinks.
Ellesmum
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Mcmum
Evening Scarlett.  So sorry that you are in this world of ed too but you're in good company here. I too have a boy, though younger than yours. The distress, crying, agony is unfortunately very normal whilst refeeding and it is really heart breaking and surreal to live with but keep going.  As others have said, feed with what you you currently give him but add, add, add.
The break through for us came with smoothies.  Haagan Daaz , cream, honey, ground almond.  Anything to get the fats up. Last summer my son was rolling around on the floor, jerking his limbs, lashing out and generally behaving like a tortured soul.  
He is almost "normal " now. A complete change but he has to eat LOADS! Keep going, keep getting advice, seek out any support you can and don't stop hoping.  Your boy can come back to you xx
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Scarlett81
Ellesmum thank you I will get to Boots and give that a try!  

McMum, that is good to hear!  Fantastic news that your son is doing so well.

Thank goodness I found this forum.  You have all given me so much hope and courage already.  I feel like I have a new coat of armour to put on in the morning. xxx
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Foodsupport_AUS
Scarlett81 you are doing really well. It is incredibly hard to deal with our children's distress. Unfortunately medication is of limited benefit for them. Some have tried medications such as Olanzapine to help with meal related anxiety, others medications from the benzodiazepine class. My D tried both, and really it didn't help her eat better, nor did it really help with meal related anxiety. Both caused terrible drowsiness and in the long run we felt they were not worth it. By tolerating their anxiety, letting them know that they are strong and we believe they can overcome their fear - we are helping them move forward in their distress tolerance (and ours). 

Keep on doing what you are doing. 
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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blondie
You can buy Ensures (or ask your GP to prescribe) and put some of the banana flavoured one into the milkshake - or get the neutral flavoured one
With the tuna, could you buy the stuff in oil rather than water and not properly drain it so that some of the oil remains - or do you think he would manage tinned salmon? If so then that could increase the calories
If the bread is homemade then could you gradually cut the slices thicker and thicker? And add some ground flaxseeds?
Would he have fresh pasta instead of dried? If you get the stuff made with eggs then that's higher in calories
Ground almonds are great but we've had better luck with almond flour - it's finer and easier to disguise....
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Scarlett81
Those are great ideas, thank you.  Xxx
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smileymum

Just to add, Scarlett, we were able to add a tablespoon of rapeseed oil to fruit juice (starting with 1/2) it looked a little different  - not too bad - but  I was worried about a few droplets of oil that seemed to drift to the top in case it tasted oily so I started serving juice through a straw saying it was better for her teeth.

Also, a little olanzapine at the beginning really helped quieten the voices for my d early days, making it easier to eat. I know it doesn't work for everyone but if well tolerated, my understanding is there isn't a long wean-off process  and that you can take a little every other day, for example.  My understanding is that while something like sertraline can help, it seems to be less efficacious at lower weight (my d's psychiatrist said)

All the best! Keep coming back. So many wise people here. x

Smileymum
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tina72
Scarlett81 wrote:
Gained 1kg at first weigh in, another kg at next, then dropped 500g.  But waiting to see if he has gained next week as it will be 4 weeks.


Get him blind weighed if possible. Backwards on scale and pokerface from the nurse and no information to him, not about weight, not about gain or loss. It was the best decision ever to do that here, my 19 y old d does not even want to know her weight any more and is totally relaxed about weighings now.
Keep feeding. There is light at the end of the tunnel.
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tina72
If you blend the fruit juice (you could tell him you make some home made fruit juice as there will be more vitamins in it) you can add canola oil and it disappers in the blender.
The blender was the best thing I bought with ED here. Still my best friend...🙂
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Quote:
Just to add, Scarlett, we were able to add a tablespoon of rapeseed oil to fruit juice (starting with 1/2) it looked a little different  - not too bad - but  I was worried about a few droplets of oil that seemed to drift to the top in case it tasted oily so I started serving juice through a straw saying it was better for her teeth.


I can understand using the straw regarding the oil, but I think it should be pointed out that there is evidence that using straws can be worse for the teeth in terms in terms of decay and damage from sweet drinks, it all depends on the manner of drinking. 

This quote from a journal article summarises this:

It has been shown that the susceptibility of both
deciduous and permanent enamel to erosion arise over
a period of time and with increased frequency of acidic
beverage consumption.26 The amount of time that the
individual teeth are in contact with the acidic beverage
depends on the manner of drinking. 24 This influences
the pattern of damage caused by the acid. Johansson
et al tested six different methods of drinking in a
randomized order: holding; short-sipping; long-sipping;
gulping; nipping; and sucking. Most significant pH drop
was seen while holding the drink in the mouth before
swallowing. This was followed by the long-sipping
method. Whereas, gulping resulted in only a minor
decrease of pH. 27 Rapid erosion is seen when erosive
drinks are consumed from a straw placed labial to the
anterior teeth, or are “swished” between the teeth.28
According to Edwards and coworkers, drinking through
a straw positioned toward the back of the mouth may
help reduce the erosive potential of acidic beverages

Found in this article http://www.indianjournals.com/ijor.aspx?target=ijor:ijphrd&volume=8&issue=2&article=039
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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Scarlett81
Thanks for the info.  Turns out s is going for the "shut your eyes and down the hatch" approach!
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tina72
Scarlett81 wrote:
Thanks for the info.  Turns out s is going for the "shut your eyes and down the hatch" approach!


Sounds great!!!
Keep feeding. There is light at the end of the tunnel.
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toothfairy
Hi Scarlett from another boy's mum.
This book is excellent

https://www.amazon.com/When-Your-Teen-Eating-Disorder/dp/1684030439
Food is the medicine. Recovery is possible.
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Scarlett81
Hi tooth fairy, thanks I'll give that a try xx
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Scarlett81
So... one week on and I am putting all your advice into practice.  Thank you!  Am now managing around 2300 cal a day.  But a week on, and s is so scared and anxious.  It is taking me 45 minutes and all my sanity to get him to even look at the food.  Then he eats, thankfully, but afterwards he is so traumatised that he loses his speech, can't form words, can't sit up, can't keep limbs still, then has this scary, rapid talking nonsense coming out... he is so far beyond distraction I cannot even connect with him.  It is almost bordering on a moment of psychosis I think... It fades, but it is still with him when I have to feed him again...

6 times a day and we are both utterly exhausted and in tears.  Is this level of fear normal for 5 weeks into refeeding? Or am I pushing him beyond what he can mentally cope with?  Seeing therapist Tuesday and will ask to see the Psychiatrist but that seems far away.  Got so desperate yesterday I actually called 111 and got to speak to a mental health nurse.  She wasn't ED trained, but at least I calmed down a bit!

Feeling like my strength will break soon!
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scaredmom
HI there, 
Good for you for getting more into him. And it is so good that he finally eats!
These behaviours are part of ED,  The upset they have after eating. I know it is so hard to bear witness. 

It is exhausting life saving work. Yes this fear is common for awhile. All kids and situations are different. Is the weight going up?  Refeeding takes time and months not weeks. I know everyday feels an eternity and you are doing great! It does get better. 

It is ok to reach out for help. I want you to access the help you need to get through this. I am glad they helped you to calm down. I remember those days viscerally. I still shake thinking about it. It does get better. Come here too for support. There is always someone around.
I am a firm believer that you should never be worried about needing help and support. We are human and we have needs and dealing with ED is harrowing. 
Sending my best,
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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Scarlett81
Yes.  Weighed two days ago and 0.4kg increase.  And he now refuses to be in the kitchen when meal prep is underway so that's an accidental bonus!
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scaredmom
Well that is great to hear! Now you can add more magic potions to food to increase the weight even faster!
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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