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believingbody1

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Reply with quote  #1 
So quick update. Last week d weight gain was 0 lbs despite daily intake over 3000 calories. We figured if ED wasn't tricking us somehow then d must be hypermetabolic. This week we didn't keep perfect track but calories were at least 4-6000 (or more). At her blind weigh in yesterday she gained 7 pounds! I figure some of this may be water weight but is this too much weight for one week? Should we bring her calories down some back into the 3-4K range? The therapist mentioned maybe cutting back some but my thought is now that we have ED on the ropes and afraid then if we let up it will take advantage of it. 
D is going to dr. next week to get labs and assessment from ED specialist. Her resting heart rate is around 60 beat per minute and her capillary refill is around 3 seconds. Anyone who has been through this ever have a similar weight gain in one week? I know part of the therapy is to trust the parent but sometimes it is to the point where it is annoying! She is 10 pounds from her "target" weight but I am thinking it is closer to 15 or maybe 20 still. 
scaredmom

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Reply with quote  #2 

Hi BB1,
Now is the weight gain real? ED is crafty and there are many places that weights can be "hidden". I have heard of batteries in a female private area to increase weights. Waterloading, ankle weights. Is you step d  weighed naked or in her underwear? 

I don't think you should decrease the calories at all If there is any weight gain that is the goal and if you still need up wards of 20 pounds, keep going.
My feeling is weight gain is good and the more the better as long as it is real. 
So figure out if she is hiding weights somewhere and if it is real, celebrate. That means it will take less time to WR. 

Remember even after WR to grow she may need ++ calories still. My D is WR since Sept 2017 and now 7 kg higher than the "target" she is so much better in her mind. I actually told the FBT T that I did not listen to the team I kept up the weight gain and just ignored them. She was a bit shocked and I told her I will not let them decide to decrease the calories. My D is at 4000+ per day since even before WR and her weight gain is slowing to keep her at 60% or just above on her growth curve but that is with ++ calories.
I took the advice of my experts here to keep up the calories. Really this is the best place to get the real scoop.



Find and close loop holes and if there are none then that is great!

You are doing so well. What a lucky child!

XXX


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Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
believingbody1

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Reply with quote  #3 
Thanks SCM,

I think the weight gain is real. Post therapy session the ED was scared. D kept asking us how much she gained, how much did she have to go, you want me fat, i am disgusting, tell me, etc. It seemed genuine and not an act. I also asked T if that weight was making sure she had nothing in her pockets, etc. We plan on keeping up the calories as well. Wife is a little worried about sodium intake and water retention, etc but I keep telling her, d is 15 and will start to balance out as we get further in the process. D is also concerned about the "pouch" and puffy face. We reassured her that it would redistribute. Thanks for the support!
hopefulmama

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Reply with quote  #4 
As I am sure you know as a medical professional, weight can fluctuate from one day to the next based on time of day, when last meal was consumed, whether they had a bowel movement before one weigh in and not the other. Back in the days when I actually used to weigh myself every day, my weight could fluctuate a few pounds for no apparent reason. You thought she should have gained 2 or so lbs last week and she gained nothing.  Another few pounds this week and then assume a few pounds is because of unexplained weight fluctuations and you get to 7 pounds. I would keep feeding and not take your foot off the gas for these reasons:

1 - As hard as it is to imagine, it is actually easier on your d the faster you get the weight on.  One pound a week is as painful for her as 7 pounds a week.  The faster the weight gets on, the faster her brain can begin to heal.

2 - She probably needs more weight than you think.  Ideally you want to go back to her growth charts at least 2 years before any symptoms of ED to find her percentile ranges and then take the highest percentile forward for her current age. I remember I kept looking at my daughter's chart and trying to figure out some way she didn't have to go back to 75th percentile. The evidence was clear though and when we spent a year at 50th percentile it was pure hell for all of us. 

3 - I would not rule out some amount of water loading on her part even if she doesn't realize she is doing it. Ideally she should be weighed in a gown every time.  You would not believe the stories I have heard over the years about how girls added on weights to their body without their parents ever suspecting.  The fact that she is so upset is a good thing though. They always say you know you are over your target when you are getting flack.

You are doing an amazing job.  I am in awe.  Keep fighting while the fighting is good.  So many of us (hand raised high) have deeply regretted backing off too soon. It only gets harder the older they get and the more entrenched the illness.


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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!
wheresmywand

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Reply with quote  #5 
Hi BB I had the same thing the first couple of weeks - 3 and 2.5 kgs and I started to panic and think it was too much (?!). The lovely tina put me right and said 'don't cheer yourself too much, it won't be like that every week' - and of course it wasn't and isn't but that first few really good weight gains set us up I think and made the journey to full WR (not quite there) a lot faster, and seriously, why would we want to make it slower. I am another one who backed off too soon in the past as soon as she got up to where she'd been pre-illness, which was plenty according to the experts we were seeing by the way. It took 3 weeks of being left to her own devices for the weight to start coming off again and food groups being dropped out again, and it's much harder as time goes on because of the entrenchment in thinking around 'good' and 'bad' foods. 

I can't remember if your d is having periods again yet but if so weight can go up up to 2kgs a week or so before a period so that also needs to be taken into consideration, and even if your d isn't water loading a very full bladder can weigh a kg. Hopefully her anxiety around weighing time will decrease and I think it pays to keep a poker face every time no matter what so it's just matter-of-fact, 'on and off and about your business' and becomes less of a big deal.

I think you are doing an amazing job and can't help wishing my husband was involved even a scrap of what you are - but as you say in another thread, it can be difficult for men and he is a good provider. On that subject - no guilt is necessary for being actively involved in sport, yours and hers, that is normal and good parenting. Many of us here were into 'healthy' eating and exercise and I used to lecture at length about the evils of sugar, red meat etc etc. and also both my husband and I were a bit 'fat-ist' and commented on people's weight. I cringe now and truly deeply have changed my attitude to peoples shapes and what constitutes a 'good' figure - my h still struggles but at least is mostly quiet on the subject. It's taken me a long time to get over that and realise both my other children pretty much ignored me and I thought I was doing the right thing at the time and I cant change that now anyway.
Hopefulmama i love it when you're on here, you make me a hopeful mama. I do that exact same thing with the growth charts, working it out over and over if my daughter REALLY needs to be up to the 95th percentile etc. Its only through the advice and encouragement from this forum that I'm up to about 90 and haven't 'stopped' the many times I thought I should ...still going.
x



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17 yr old daughter dx RAN Jan 16, but starting restricting some months before that. Let go too early and now back home gaining weight again, slowly challenging fear foods and entrenched 'healthy, pure' eating habits and behaviours.
Foodsupport_AUS

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Reply with quote  #6 
I would agree that you should not cut down when she has weight gain to go. It will even out over time. My D had multiple hospitalisations because we struggled so much at home with re-feeding. She was discharged from hospital she couldn't eat at all or enough and got readmitted. We did this numerous times. In the process she would gain multiple kilograms and then lose them again. FYI there are no long stay programs in Australia so this is in the acute hospital setting. The hospital had a fixed meal plan with X calories which increased based on twice weekly weigh ins. There was often no rhyme nor reason to the weight gain. Patterns I noticed were that initial weight gain was fast, then it would slow or she would even lose a few 100g. Then it increase again as the intake increased. They averaged 1kg plus per week but it was never a straight line. Gains would be only 400g one week and then 3.5kg the next. Same intake the next week gain 1kg. 
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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.
Mamaroo

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Reply with quote  #7 
Hi, we had the same. Initially my d would loose weight post IP, then it plateau and then a massive gain, so much so that the dr thought she was binging. Since I was with all the time I know it was not the case. Yes, some of it might be water, my d would drink half a liter of vitamin water before a weigh in, but I would always alert the dr to this. As the others have said, do not stop feeding her! Later when my d was starting to grow and the dr wanted to reduce calories. I told her that my d's brain can only start to heal 6-12 after weight restoration, why would we want to prolong this ordeal? The dr was speechless for once. Like Scaredmom, I also gave her more that the team recommended. You live with her everyday and know what needs. You are doing a great job! 
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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.
Torie

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Reply with quote  #8 
Quote:
Originally Posted by wheresmywand
Hopefulmama i love it when you're on here, you make me a hopeful mama. 


YES!!

THere will always be a special place in my heart for hopefulmama because she gave me so much hope in those terrible, dark, scary days when my d kept saying she wanted to die.  Hopefulmama taught me that I could drag my d back to health anyway.

What an amazing gift that was.

"Thanks" is woefully inadequate, but hopefulmama if you're reading this, thanks.  So much.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
toothfairy

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Reply with quote  #9 

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Food is the medicine. Recovery is possible.
toothfairy

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Reply with quote  #10 
I would also look into the possibility of Edema and re-feeding syndrome.
https://www.eatingdisorderhope.com/blog/refeeding-syndrome-overview

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Food is the medicine. Recovery is possible.
toothfairy

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Reply with quote  #11 
Personally I would probably bring her to ER, or at least get her appt with an ED specialist brought forward.

Here is a list of the AED guidelines. Many clinicians are not aware of these. I advise you to print them, read them, mark our all the proper required tests and bring them with you to all appointments or ER . Best wishes.
http://www.nyeatingdisorders.org/pdf/AED%20Medical%20Management%20Guide%203rd%20Edition.pdf

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Food is the medicine. Recovery is possible.
tina72

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Reply with quote  #12 
Hi,
as the others have said weight gain is kind of mysteric and some weeks we saw more than 2 kg (but that was an exeption) and some weeks with the same amount of calories we had no weight gain at all. I am sure you will not see that weight gain again next week and it might be kind of water reloading from the body or periods to come. I would not cut back calories, but be sure she is feeling o.k. and do not go over 6000. Refeeding syndrom is very rare, I would not be too frightened about, just be alert that this is existing. Her heart rate is great.
The faster you get that missing weight on the better, it doesn´t help her to slow down the recovery prozess.
You are doing really great!!!
Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
Foodsupport_AUS

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Reply with quote  #13 
My reading of things is that refeeding syndrome and oedema is a very unlikely cause of the weight gain. The risk of refeeding syndrome generally occurs in the first few days although it can occur up to two weeks post starting of feeding. At four weeks I worry that by even suggesting refeeding syndrome creates unnecessary fear. This guideline is an Australian one I have found about assessing for risk and managing refeeding syndrome. It also shows the evidence base it uses.   

http://www.schn.health.nsw.gov.au/_policies/pdf/2013-7036.pdf

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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.
toothfairy

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Reply with quote  #14 
Hi Foodsupport_AUS,
I definitely do not want to create unnecessary fear, and will happily delete my posts.
I did not delete them just now as yours and Tina's will look out of place if I do , so please feel free to delete any of my posts.
Best Wishes,
TF


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Food is the medicine. Recovery is possible.
hopefulmama

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Reply with quote  #15 
Quote:
Quote:
Originally Posted by wheresmywand
Hopefulmama i love it when you're on here, you make me a hopeful mama. 


YES!!

THere will always be a special place in my heart for hopefulmama because she gave me so much hope in those terrible, dark, scary days when my d kept saying she wanted to die.  Hopefulmama taught me that I could drag my d back to health anyway.

What an amazing gift that was.

"Thanks" is woefully inadequate, but hopefulmama if you're reading this, thanks.  So much.  xx

Wow! Thanks wheresmywand and Torie. You made my day!!

Torie, I remember talking to you on the phone many years ago when this was all so new to you. Look at the amazing job you have done with your daughter and now helping so many others. [love]To me that is what this forum is all about.  You get help and then turn around and provide help when your child is in a good place. From the beginning when my daughter got sick almost 7 years ago, I prayed that God would use the experience for good. I can honestly say though that most days I prayed it without hope or real belief that it could happen. It removes some of the pain and bitterness of the journey to know our experience has helped others, so thank you for that!

Wheresmywand - there is hope! I often tell people I was THE most ill prepared mother to handle a child with anorexia. I was an obsessive worrier and very reactive. If I could help my daughter recover it is possible for anyone. Just keep hammering away at ED and letting your daughter know you will accept nothing short of total recovery for her. My daughter now says my "nagging" about this was very helpful to her. 

I will always have  a special place in my heart for the people on this forum, past and present.  I KNOW my daughter would not be recovered were it not for the knowledge and support I received here. Thanks again for making my day!

__________________
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!
tina72

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Reply with quote  #16 
Hi toothfairy,
I think it is necessary to be aware of both, oedema and refeeding syndrom. Foodsupport surely wanted to avoid panic in believingbody1 house. [biggrin]
So the information is appreciated and I am sure believingbody1 will now see that this will not be the case with his d and we can leave everything like it is.
[wave]
Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
tina72

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Reply with quote  #17 
Back to believingbody1,
during refeeding you will experience that once the basic depots of the body are refilled and the body is not expecting another starvation time the daily amount of calories will increase without gaining. The metabolism system works on a higher level then and that is the cause why so many patients need to stay on relatively high intake for a long time. Although my d is WR for 9 months now she is still on the same amount just to keep that weight.

It is important IF you ever think about cutting back calories some time in future that you do it in a way that your d doesn´t recognize it. She should not think "I am eating too much, my parents think I must restrict something". The biggest fear of my d today is that she might need to diet to keep her weight and that will trigger her to relapse. So I just changed from double cream to normal cream and add benecalorie only 1-2 times a week. That is something she doesn´t recognize and if needed I can increase it again.
Best is to slow back the amount of adding cream and oil and butter a bit, but keep 3 meals and 2-3 snacks to keep her blood sugar level still constant. But I would not do that before constant WR.

Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
OneToughMomma

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Reply with quote  #18 
Dear believingbody1,

I'd like to point out that your d has gained an average of 3.5 lb over 2 weeks.  Next week you might see a loss under the same conditions.  She might get a tummy bug, she might get harder to feed for a few days, or her body might have very high needs for some complex repair that we don't understand.  

Each week, we found, is unpredictable and seemingly random in its ups or downs, but over time, like the stock market, you want to see those peaks and troughs trending upward.

We unfortunately know that you are in for a very long haul, and it might help to keep your eye on the big picture.  

You're all doing great.  Just keep going.

xoOTM

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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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