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believingbody1

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Reply with quote  #1 
Hello,

we are currently in our 4th week of refeed. The first 2 weeks I am not counting though, as us the parent were ignorant to exactly how much d needed and failed meals, etc. Last week, while not exact numbers we fed well over 3000 calories and probably closer to 4-5000 daily. Weigh in at her session this past monday...0 pounds gained. Figure she is in a hypermetabolic state and trying to shoot for closer to 6000 calories a day this week. Tough though. So a few questions.

As a bodybuilder, I am used to getting obcene amount of Kcals daily, mostly in the form of protein for muscle growth. There are many companies that sell mass or weight gainer powders. I figured I would get one for d. The one I chose has 252 g carbs/serving but also 50 gm protein. My plan was to do half serving twice a day with all the goodies of whole milk, peanut butter, ice cream, etc. to bump up the calories. The therapist is concerned this may be too much daily protein on her kidneys, as whole meals also will provide protein. Her Bun/Creatinine were normal pre treatment. She urinates regularly and has more than (have had to scale back and replace with juices/etc.) water intake. Any thoughts on this? My thought is the protein will help spare muscle loss/atrophy but as she is only 54.5 kg, one serving would be her RDA. Should I be concerned about too much protein during WR?

This brings me to refeed syndrome. How prevalent is it? Should we "build" up to 6000 calories or throw caution to the wind and get as many Kcals in d as possible? Is it like going 0 to 60 in the sense that her body was used to daily calorie intake in the hundreds to now well into the thousands. We plan on contacting her pediatrician to order labs now that she is eating somewhat regularly just to keep an eye on her labs. Anyone who unfortunately experienced refeed syndrome please weigh in and what should I keep an eye out for. Thanks in advance.
Foodsupport_AUS

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Reply with quote  #2 
Re-feeding syndrome is an issue at the time of severe restriction and is related to low bodyweight, so it is unlikely your D is at risk. The medical team should alert you if there are concerns, but if at high risk kids should be hospitalised and not re-feeding at home. In your case I don't think re-feeding syndrome is relevant. 

As for protein powders there is a lot of evidence for renal damage from high protein loads and this is an issue in body builders. She does need adequate protein but it is usually not the biggest issue for recovery. It is important to remember that she will recover by regaining fat mass not muscle mass. As such I would definitely not be feeding her those sorts of supplements, try Benecalorie instead - more fats are needed. 

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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.
atdt31_US

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Reply with quote  #3 
Not a doctor and have never done the sort of refeeding most on here have -- that said, it seems to me that the ratio of protein to fat to carb is important and I would not want to vastly increase the protein by itself.  I would wonder if there is purging activity if she has had 3000-5000 calories daily for two weeks and has zero weight gain.  I wanted to say congrats on your hard work and research and really diving right in with intensity to learn so much so fast -- your posts really show your commitment to the big picture and end result.  
__________________
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, I believe, based solely on weight being less than 75% of Ideal Body Weight (not sure if he also considered low bone density to be a significant nutritional deficiency - not positive he knew her bmd).
Mamaroo

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Reply with quote  #4 
Hi, I'm not a nutritionist, but can tell you how much protein and fat my d had during refeeding. She didn't eat food and for several months was refed on ensures. She had 6 x 300 kcal ensures a day totalling 1800 kcal, containing 75g protein and 59g fat. Extrapolating for 3000 and 4000 kcal, I would say she would need 125g (165g) protein and 98g (131g) fat on a 3000 kcal (4 000) diet. When getting her to eat food again, I gave her protein bar snacks and protein powder shakes (although not for body builders) such as sustagen to get all the protein in as our everyday diet didn't contain enough protein (and we were eating meat!).  

Just another point I feel you need warning. When she starts to gain weight, it is going to go around her face and tummy first and will cause her a great deal of distress. This is normal and after a couple of months (of constant refeeding) the weight will go to the arms and legs. I tried to explain that to our d, but it completely backfired (I said: "The weight will distributed after a while", she heard: "Yes, you are fat and we are feeding you too much"). Just tell her you know it is difficult for her. Eva Musby, in her book, has some excellent advice what to say (and what not to).

Sending you lots of best wishes!

__________________
D became obsessed with exercise at age 9. 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. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
tina72

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Reply with quote  #5 
Hi,
I think you should be careful with too much protein. She will get enough protein to start normal muscle building with a normal mixture of food. The big thing with weight gain at the start is that you need to refeed her brain. Her brain is made of 80% fat and it needs fat and glucose to work well and that is the first that is cut out with AN normally and therefor she needs to fill these depots first to make her brain work. My d needs about 100g fat a day just to keep the weight (no real gaining any more because she is WR and grown out). And her brain is recovering quite well now.

What Mamaroo said is important, be aware that the weight will be watchable on face and tummy first. But it will go all over the body and give her a nice figure a few months later. My d had to gain more than 10 kg and is still wearing nearly the same size as before IP, I only shreddered these size 0 jeans...[wink]

You are doing a great job, many of us needed weeks just to stop weight loss!

Tina72
hopefulmama

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Reply with quote  #6 
Ditto what Tina said as to fats.  That is what promotes brain healing.  I have seen images of an anorexic brain and the gray matter is shrunken because it is lacking fats.  My d also needed TONS of fats, nuts, olive oil, full fat milk, full fat yogurt, full fat ice cream.  We added butters (peanut, almond, cashew) to everything like bagels, oatmeal, smoothies.  I also added heavy whipping cream to smoothies, creamy based soups, etc. Again, it makes sense that adding protein to add muscle is the way to go, but healing from anorexia doesn't work that way.

Don't beat yourself up about not feeding her enough to gain weight.  You are doing an amazing job and so far ahead of the curve from where most of us were in the beginning. Again, you would think that all of that starving would stall her metabolism and that she would gain quickly.  For whatever reason though, it doesn't work that way with anorexia.  It is not at all uncommon for parents to have to feed massive amounts of calories before weight gain starts.  There was a parent on the forum named Mamabear who fed 6,000 cals a day to get her daughter weight restored and then had to continue at that rate for a few years to keep up with growth (she was early in puberty when she got sick.)

Don't be fooled into thinking that puberty is over for your daughter.  Many parents have seen puberty kick in again when they start to refeed.  Acne break outs and vertical growth occur even when you thought puberty was over.  My daughter was 19 when finally properly weight restored back to her curve and she grew almost 2 inches.  I kept telling her I thought she had grown.  Her dresses were shorter on her. At first I thought it was because she was bustier, but it was in fact vertical height.

It is true that when the weight gain starts it will concentrate in areas before later distributing.  Has anyone mentioned the Minnesota Starvation Study?  If you are not familiar a Google search will show you that it was conducted during WWII to prepare for refeeding concentration camp survivors.  Only conscientious objectors that met stringent physical and mental health qualifications could participate. It is fascinating to see the symptoms these men had that mirrored anorexia. The entire experiment is fascinating but how they gained weight during refeeding is so what we see in eating disorders. The weight packs on around the trunk and then later redistributes.  I had such a hard time with this when by daughter was gaining.  Sure enough though within 6 months or so it had all redistributed and she looked wonderful and curvy. 

Again, you are doing an amazing job!!

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Enjoying my 23 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
EC_Mom

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Reply with quote  #7 
I recommend Michele Vivas, a nutritionist who is evidence-based and FBT-enthusiast, and does skype sessions with parents. She can give great, concrete advice on refeeding and what you should be providing. (She told us lots of carbs and fats, FYI).
iHateED

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Reply with quote  #8 
It is true that the weight goes to the stomach area and face first during weight gain.  This is because the body knows to protect it's vital organs and brain when it's not sure how long it will be until the next meal.  It's a protection instinct in our bodies. 

More than protein, your D needs lots and lots of fats.  All of your D's organs need fat to repair the damage done.  They are working on overdrive to repair themselves which may be why you haven't seen weight gain yet.   If you can make her what she thinks is a protein shake but you have added lots of canola oil, ground nuts and full fat yogurt - and give her this drink daily - you will be on your way to weight gain.  I know in my heart I could not have gotten my d weight restored (WR) without a daily shake.  If you can get 50-75 or more grams of fat into that shake you will be on your way.   It is best to refrain from giving any of her food names, like protein shake, just call it a shake.  This disease makes the sufferer focus on fat, carbs, protein etc and you are trying to break that cycle.   In the beginning of our battle my D would ask what's in her shake.   My response was always yogurt, frozen fruit and juice.  This wasn't a lie so I didn't feel guilty. 

Hang in there!
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