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PurpleRain

I’ve been meaning to write an update but I haven’t had enough time/energy/will.

So, my D is doing quite well, eating everything we serve, still having milkshakes with add ons, mainly canola oil, no longer putting on weight as before, she is stable in a higher curve than ever before at the moment with around 3,000 + cal.

We survived, and even enjoyed her birthday, my birthday, Halloween and a slumber party. I am now bracing myself for Christmas ha ha (I actually think it was in January that she started skipping lunch and possibly breakfast after overeating and putting up weight (real or perceived) in Christmas last year, so I am trying not to freak out in advance.

She didn´t wanted to do anything for her birthday but I managed to organize something nice with cousins and best friend (theme park) and it was a success. A shaky start (we ran a bit late and snack was tense, we ate at johnny rockets and she was the only one that did not order a burger, she had a bite of mine), but overall it was fun, she had a good time, parents end up exhausted. My birthday (a significant one) was nothing like I though it would be (when I imagined it last year, before ED).  Again, I managed to organize something nice, a quiet weekend away (with the kids, but still better than nothing), we did have a few tense moments (we never have those at home anymore but, I don’t know, being away, disturbed rutines…) all in all not too bad. My husband missed his own significant birthday celebration as well earlier this year. We were in the middle of refeeding and had to cancel when we realized it was going to be a nightmare, so maybe next year we’ll do something nice for both of us.

Then came Halloween, which went pretty well.She is older now (14) so it’s more about helping younger cousins and brother to get their costumes ready and make up done. She did get some candy and ate it; it was fun and not a bit tense. She went out with friends and had lunch and a snack with them. She ate a snack in front of me before I left her and another (big one) immediately when I picked her up, she ate it without a fuss and ask for something extra(I did called her at lunchtime).

Finally, cousin’s birthday (same age as her) and slumber party. I can see how far we are because even less than a couple of months ago I was nervous about it (this cousin usually has slumber parties for her birthday so I kind of knew it was coming), but when it came I was fine. It was an easy one because it was at my sister in-law’s house. I stayed until after the cake, and was communicating with D through watts app, as we usually do it for snacks during the week. She was a bit tense before I left and didn’t want pizza or sushi (both favorite foods). I made sure she had ham, cheese, and some sushi as a snack before I left, and she had a (very late) dinner, breakfast and snack (without me, no fuss). When I arrived next day she was eating in a relaxed fashion some of the sushi and pizza she didn’t want the previous night. Her state was great and she continued eating without any problem the rest of the weekend, so success.

I feel that we are very slowly getting to phase II although I am in no hurry to give back control, it just kind of happened (eating snacks unsupervised kind of needed to happen sometimes and went well). I’m planning on staying in a very early phase II for a looooong time (it’s nerve racking), unsupervised snacks only when strictly necessary, parties and such only when someone I trust (or facetime) can report on snacks and lunch; she sometimes chooses from appropriate options (mainly snacks and in restaurants).

My question is (yes, there is one at the end of this ramble):
she overshoot quite a bit (couple of percentiles from her highest ever, she was usually less that 50th  most of her live, she was a tiny 2th percentile baby, and very lean 25th percentile up until 6th grade, when she filled up  to 50th percentile previous to puberty, then she shoot up, had her first period at 12, at 13 started eating “healthy”, shoot up again, got a stomach bug and down she went the rabbit hole). Right now, she is at eighty something percentile and looks great. So, is she supposed to stay there? Or will she go back to 75-50? The reason I ask is NOT because I’m afraid of her being in the current percentile or even higher, quite the opposite, I think I will be afraid if she goes down, should I? or is that her body going back to where it belongs? how do I know how far down is her body stabilizing and when to intervene?

thoughts? experiences?

thanks a lot

13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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Foodsupport_AUS
I don't think anyone truly has the answer to this. 
In general paedatricians don't use birth weight as an indicator of where normal weight should be, rather it is the growth charts from two onwards which are more likely to be indicative of where their natural growth belongs.
One option you could do is to stop measuring and monitor her behaviour and eating - right now it sounds like it is much more about state not weight - so perhaps not measuring and monitoring her behaviour, eating etc. will give you the best idea of where she should be. After all it sounds like you have quite a cushion of weight over and above all of her previous growth curves so her behaviour should give you the clues as to true recovery. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Torie
Many find, looking back, that percentile had been going down for a few years pre-ED, but this was not our experience.  My d has just gradually gone up in percentile her whole life, other then the dark days of ED.   She started out a skinny kid, and is now a bit above average.  So no telling. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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PurpleRain
Yes, she is doing pretty well. I don't weight her too often, I'm good at eyeballing her, but sometimes I would like to know for sure (don't we all?) what's the "perfect" weight or in this case, because she is still very young (although I think she has almost finish vertical growth, maybe an inch more in the following years, she is as tall as me but dad is much taller), the "perfect" percentile, but I guess there isn't one and I just have to keep  watching her like a hawk.
Thanks food support an torie.
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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ValentinaGermania
My d was nearly grown out during refeeding and surprisingly grew 1,5 cm then after it at age 18. So I have no own experience with a growing child but want you to know that they can grow even when nobody does expect that.
From all other families here I am in contact with that have children at your ds age they went well with keeping them a bit above their former weight to have a buffer for growths spurts and development. You cannot imagine how quick this buffer sometimes was pulverised with one growth spurt. It is better to be ahead with weight then to wake up ED again with a weight loss during a growth spurt. My 2 cents.
Keep feeding. There is light at the end of the tunnel.
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PurpleRain
Thank you Tina, yes a growth spurt was actually part of the equation when she went down the rabbit hole in january-february and a tummy bug. she got sick during late refeeding as well so I'm all for a cushion. I did grow vertically all through high school my self, up to my 18-19th birthday so I guess she still has some centimetres to go.
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
Quote
PurpleRain
Foodsupport I was checking the charts and she has been around 50th percentile from age 5, she was at 75th just before puberty around 12,  then rabbit hole at 13, so I guess I don't want her any lower than 75-80th percent at the moment, maybe even a bit higher for the first year after WR (we are in 5 months in). She is almost at 90th at the moment (around 89th in height) and good state, so I guess it's a good curve for her at the moment.
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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MKR
Hi PurpleRain,

You are right. The buffer should also allow for your daughter to fill out (hips and breasts) once she has grown vertically, as is normal in puberty. Periods require energy as well, so good to have reserves.

I like the motivation you provide - celebrating at a theme park, fun and social. She deserves to see the life outside the ED.

All the best, 
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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PurpleRain
Thanks zylie, so far so good. I'm trying to get ready for Christmas now, last big challenge of this year!
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
Quote

        

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