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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Mamaroo
This is my first post, but I've been reading and learning lot on this forum. Some background first. As you can see from my forum name, we are from Australia. My D was 9.5 when she started to exercise a lot, practising her gymnastics moves. Then she eliminated sweets and snacks. She still ate until December 2015 when I realised she was loosing weight. That is when ED's claws came out! She started to eat less and less and cook more and more. It took several visits to several doctors before we got the right treatment. She was IP at the local state children's hospital for 2 weeks in the general ward for her heart and then admitted to the same hospital's ED program.

When she came home she still would not eat, but we, with the hospital, slowly got her to accept Ensures, until she was having 6 Ensure plus a day. Then small snacks were introduced until she was having around 2300 Cal a day. She gained weight at around 2 kg a month. I won't go into the journey you all know so well of spilled Ensures/snacks, running away, screaming and SH etc.

The next challenge was to exchange the Ensures for food. Since her weight gain was acceptable, they decided to exchange like for like, that is having a sandwich with the same calories than an Ensure. And so on with all the food. That has now progressed that she is having only 1 Ensure at supper. The problem is that her weight gain has stalled. Where possible I'm using the calorie values on the packages or looking it up on the internet. I'm also allowing for uncertainty and having some food left on the plate by adding some more calories at each meal. So what am I missing? Do any of you have experience in going from Ensures to food? Any advice would be greatly appreciated.
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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EDAction
Welcome, Mamaroo, to the club no one wants to join! [frown]

I am so sorry for all that you are going through.  It is truly a trip to hell and back.  The important part is ". . . and back".  Know that you will find support here no matter where you are on the trip.

If your D's weight gain has stalled in spite of you providing her the same nutrition I would consider . . . (1) possibly your D's metabolism has gone into overdrive now that she is receiving consistent nutrition.  I think this is called being "hypermetabolic" and it is part of what happens during refeeding (I am not a medical professional, but ask your treatment team or search FEAST for info re: hypermetabolism); (2) possibly your D has hit a growth spurt and her body needs more daily nutrition than even just recently; (3) possibly your D is hiding some food (it's quite amazing how sneaky and creative/desparate ED can be); and/or (4) possibly there is purging (either vomiting or excessive exercising - both ways to get rid of the nutrition that has been taken in).

I know your D was treated in IP and the hospital ED program.  Do you have any support from those programs now that she is home?  

Thinking of you.
DD diagnosed with anorexia at 14; FBT at home with the help of psychologist and medical dr; 3+ years later and doing well (knock on wood)
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AUSSIEedfamily
Dear Mamaroo,

Welcome here although sorry you have had to find us. Which state in Australia?

Did the hospital provide you with a discharge plan?

I am making a guess at your D's age to be about 11. Many here have had to feed as much as 6000 to 6500 calories per day for as long as 2 to 2.5 years for their child of this age to get them into solid recovery state.

Here is some info from one of my posts on another thread.


Here is a research report that discusses the topic.

http://www.chop.edu/doctors/peebles-rebecka

Rebecka Peebles MD is one of the F.E.A.S.T clinical advisory panel members & is an Adolescent Medicine Specialist and Co-director of the Eating Disorder Assessment and Treatment Program at Children's Hospital of Philadelphia.

Eating Disorders in Children and Adolescents: State of the Art Review

Kenisha Campbell, Rebecka Peebles

Here is an extract from that report which I believe identifies the scenario of Children & Adolescents & the topic of how much nutrition is needed.

It is important to note that children and adolescents are not “little adults,” and because of their hypermetabolic state, once nutrition is introduced, their caloric needs are high, typically between 3000 and 6000 kcal daily. They may remain hypermetabolic for up to 2 years,113,140 so it is important not to reduce caloric intake prematurely once they reach their weight goal



ED Dad
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Mamaroo
Thank you all for your replies. I'll definitely start adding some more calories and keep a closer eye on her. EDAction: thanks for the tips, we are seeing our care coordinator at the ED program every week. Last week I mention my concern about the stalled weight gain, so they organised a meeting with the dietician next week after her monthly medical. AUSSIEesfamily: thanks for the links and additional posts. We are in WA, the hospital did provide a mealplan, which D did not follow and was thus replaced with the ensures and snacks.
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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AUSSIEedfamily
Dear Mamaroo,

You might think about getting back in touch with the hosptial & the ED program as they have recently employed a couple of mums as peer support workers & those mums are from this very forum.

They now do a lot more for meal support at home.

I will try & connect you with them.
ED Dad
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Mamaroo
Dear AUSSIEEedfamily

That would be great! I'll ask our care coordinator about that too when we see her next week. This forum is just so great and I appreciate all the support :-)
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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Foodsupport_AUS
Welcome to the forum. 

You have done an amazing job, it sounds like you are still feeding for growth. With that in mind it may well be that the real issue with her slowed gain is that you have reached the maximum gain you are going to get for the amount of energy in. That is I don't think it is swapping Ensures for Food that is the problem, it is the amount of food. Since you still need gain unfortunately I think you will just have to increase amount in. She will be on the cusp of puberty at this stage, and may well just need more fuel for it. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Jasmine1
Sounds like you've done a great job. My daughter was prescribed a nutritional drink for a while (Fresubin) but I always remember the eating disorder nurse said it is better for recovery and better nutritionally for my daughter to have 'real' food. So well done that your daughter is eating well and having 'real' food!! The nurse gave us some ideas of foods to have instead of the fresubin with equivalent calories. The list including things like crisps, Bombay mix, peanuts, milkshakes and smoothies. For my daughter, smoothies seem to have worked well so we gave her a 300 calorie smoothie with her breakfast. Made of blueberries, apple juice, banana, double cream, full fat yoghurt and spoonful of caster sugar all blended up.
Daughter was age 11 when she started restricting Aug 2014, admitted to paed ward Dec 2014 for low BP, pulse rate and spent 3 weeks there. As they were about to NG tube her, she decided to eat again. After approx. 1.5 years on a meal plan and lots of toil, sweat and tears she is weight restored and has just been discharged from NHS care. It's been a very slow traumatic process but each day we are making progress.
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