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Torie

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Reply with quote  #26 
Doris, I was in a very similar situation back in the day.  I knew my d needed more weight, but everyone else said she was fine.  That includes the pediatrician who had treated her since birth.  I was lucky to be able to take her to Dr. Peebles at CHOP, a world-class doc at one of the top children's hospitals in the US.  What a blessing!  When Dr P said she needed more weight, everyone stopped arguing with me.

I can't remember where you are geographically.  I wonder if a phone consultation might be an option if you don't have a true ED expert near enough for a visit.

Sucks that we need to take on the world, when we are already battling with ED.  Ugh.

Keep swimming. xx

-Torie

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

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Reply with quote  #27 
Also, not sure if you already know this, but the weight usually settles first on the face and belly, which tends to make the uninitiated think the sufferer has plenty of weight.  It takes a while to redistribute, but it does. xx

-Torie

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

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Reply with quote  #28 
Thanks Torie, we are in the UK.  I didn't know that about weight on face and belly first, but looking at D that is certainly true.  I am determined to "just keep swimming" May have to change my name from Doris to Dory!! Thank you xx
tina72

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Reply with quote  #29 
Haha, yes Dory, keep swimming!
This name is for you!
Tina72
silvermoon

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Reply with quote  #30 
First time to post properly. The comments "Without a plan you keep her within 80% recovery and there is no aim to achieve 100%. But that is possible." Is really interesting and I will be setting up a plan for tackling fear foods for my daughter based on this suggestion tina72. Thank you:)

My D is 13 years old and was diagnosed with RAN on 23 Jan 18**. We are following FBT with support weekly from CHAMS. My D has experienced similar issues as many parents have described here, with high levels of distress during the refeeding process over the last few weeks. She has continued to gain weight steadily and is now 92% weight for height.

The next plan for me and H is to really tackle the fear foods with a real plan, so this suggestion is going into action tomorrow. Often read others posts and find very useful and reassuring We're not alone with dealing with the illness.

**(Edited the date, mistyped 2017 but we are only 5 weeks into treatment)
Torie

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Reply with quote  #31 
Dory,

I have gone back and re-read your previous posts, and I would pretty much bet my house that your d will indeed need to regain all the weight she lost and then some to make up for the year's time she should have gained some.  You said:

Quote:
Originally Posted by doris
She has lost 2lbs this week so now weighs less than on our first camhs appointment. I get that she's not going to suddenly, magically get better but my god I didn't realise it was going to be this all consuming to care for her. And, she only has around 10lb to gain to be in her healthy weight range. 


I have never heard of CAMHS saying someone has AN, and then the person only needed to gain 10 pounds.  Yes, I've probably heard that they have SAID this, but CAMHS is notorious for a) delaying diagnosis until sufferer is very ill and very underweight and b) underestimating how much weight gain is needed.

I'm a little unclear about some of the timeline (and "weightline"), but it sounds as though your d has been very ill at a weight not drastically lower than her all-time highest weight.  

I'm also skeptical that your d was ever overweight in any meaningful way.  Sure, she might have been above the flawed BMI charts, but that doesn't count as meaningful.  

Was she EVER much above the weight that was clearly not enough?  I mean, if her "unwell" weight is fairly close to her highest ever weight, well, she needs to get back where she was.

Please trust me on this:  You want to be SURE your d is at a good weight asap because CAMHS can get flaky when they are only 17, and in any case, your parental authority will be lessening in what seems like the blink of an eye.

Your best chance to restore your d's health is now.

I wonder if your h is concerned about her potential to be "overweight."  If so, we could help find some articles for him to read if you think that might be a help.  I know I have seen better ones than the ones I posted earlier - those were just the first ones I found rather than the best ones I could find with more effort.

I'm afraid I might seem overbearing or repetitious or insensitive or any of a number of other unfortunate things, but I decided it was worth the risk.  

Please, try to get your h on board with focusing on getting ENOUGH weight on your d without worrying that you might end up with too much.  ANY amount of worrying about "too much" is too much.

Hugs xx

-Torie

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

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Reply with quote  #32 
Hi Doris/Dory,

I've been reading your thread with interest, your husband could be mine. Mine took my daughter's dessert the other night (out of her hands)and started eating it. Then they both called me 'psycho' when I objected to this. Not like she had a mountain to eat just a small/medium serve. GGRRR. You seem to have a great sense of humour amidst the stress which is wonderful.
Anyway don't have time for long reply atm but I found this this morning and printed it out for d and h to read later and I wondered if you would also find it helpful...
right now lets see if I can do this.
Grr ok I can't do it but if you look on page 5 here theres a post from toothfairy about target weights and setting them too low. There's heaps of links there and some are really good but the best one for me and the one in language I think my d will relate to, and perhaps more importantly was motivating for me to 'just keep swimming'  is about halfway down the first page and it's in Psychology Today by 'Hungerexpert'.
Have a read if you haven't already.
Sounds like you are doing fabulously 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.
tina72

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Reply with quote  #33 
Hi wheresmywand,

"Mine took my daughter's dessert the other night (out of her hands)and started eating it."
No words. Mine is not always on the same page with me when we are alone, but he would never do something like that. That is not funny.
Can you try to give her a new dessert if he does that again?
Can you think about having a skype session with Eva Musby or Laura Collins to get him into the boat?

You need to fight so much and you should not need to fight ED and your husband. Really not.

Hi silvermoon,
welcome here and sorry that you have to join us, but that is the best place to be at the moment.
Won´t you open a new threat and just tell us a bit more about your situation?
I think you might need some help. You tell that she is not WR after 1 year and that might be the cause she is still struggling so much. Or did you confound 2017 and 2018?
Tina72
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Reply with quote  #34 
Silvermoon,
Just saw you corrected the date, so I am a bit more relaxed...[wink]
Welcome again!
Tina72
deenl

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Reply with quote  #35 
I think this is the link wheresmywand wanted to post about setting target weights. 

Warm wishes,

D


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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
doris

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Reply with quote  #36 
Once again, thank you all for your thought, time and care.

Torie the timeline is as follows

1st April 2017 daughter weighed about 12 stone / 76kg. Very active , but in hindsight was binge eating. Decided to start eating more healthily (ie having sensible breakfast at home not a packet of biscuits or two and a fizzy drink from the shop on the way to school)

31st July 2017 finally persuaded her to come to GP..had restricted and restricted to the point where she was eating just a piece of fruit a day and drinking very little. By this point she had lost approx 4 stone  so she weighed around 8 stone / 51kg, height 174cm. GP referred straight away to CAMHS and we started seeing them mid August. Target weight range set at 57.8-62.7kg

20th November 2017 admitted to general paediatric ward for refeeding weight at admittance 46.5kg. Discharged two weeks later weight 49.2kg (and I finally pulled on my big girl pants properly!!! my D had eaten so many foods in hospital and the only way to get her better was for me to keep feeding her at the same rate no matter what)

23rd February 2018 weight 58.2kg height now 176cm 

When I write it all down like this I feel grateful for how far we have come, I feel enthused by how much better my D is in herself but I am so acutely aware that around food the ED thoughts are still very strong and we have to "just keep swimming". Every battle breaks my heart but every victory strengthens my resolve...we will get there..wherever the weight that "there" ends up being that is right for my D to live a full and normal life.

Wheresmywand, thank you for pointing out the Psychology Today article. My husband is a farmer too...they are a breed apart and it perhaps explains why they have so much in common, but remember, us farmer's wives are made of tough stuff!! xx 

Silvermoon, you sound like you are doing a great job already.. keep going and keep using this forum for support. In the early days I found it all so overwhelming I struggled to read replies to my posts and accept that my D was "as bad" as the Ds of those that were giving me advice..in hindsight (that thing I suspect a lot of us wished we had) I realise I should and could have listened much harder to all the great wisdom and experience here.

Mamaroo

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Reply with quote  #37 
Hi, I'm a bit concerned that there is so much focus on your d being overweight before AN came. I had a quick look at the height/ weight chart for girls. If your d at 15/16 years of age weighed 76kg, it would put her on the 95% percentile. You didn't say how tall she was, but assuming she didn't grow much between April and July (and if she was restricting, she would not have grown), her height of 174cm is also on the 95% percentile. My d is also very tall, height at 95%, and weight historically at 90%, so there isn't much deviation between weight and height percentile. Also children tend to gain weight before a grow spurt, so your d might have looked chubby, but that was just her body's way of getting ready to grow. At a height of 176cm, I would put her ideal weight (for now, based on the chart) between 70 and 78kg. A target weight of 62kg is way too low (in my opinion). I'm attaching the chart for your info.

Sending you lots of best wishes!!!

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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.
doris

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Reply with quote  #38 
Thanks Mamaroo
I can't see the chart but I am rapidly coming to the conclusion that her likely "ideal" weight is quite a bit more than the range set by CAMHS. At the moment we are only just at the bottom so I am still feeding to put weight on without too much resistance, however, I think that CAMHS have probably set us up for the mother of all ED rows when she realises she has to keep going to get truly better. I have to hope that the small improvements I see in her cognitive functioning continue to help her realise that normal is worth fighting for...bumpy road ahead.
atdt31_US

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Reply with quote  #39 
HI -- I wonder if you have done any reading on the kartiniclinic blog?  Kartini is a well-regarded ED treatment center run by pediatrician, Dr. Julie O'Toole.  The clinic website and affiliated blog have tons of info -- here is a link to ONE article Dr. O'Toole has written that you might find useful.  If you want to see more, you can search "ideal body weight"on her blog to find her entries in that regard.  Best wishes ...

https://www.kartiniclinic.com/blog/post/determining-ideal-body-weight/

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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, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
Foodsupport_AUS

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Reply with quote  #40 
Doris there are some great sites available to help you work this out for yourself. I agree with Mamaroo that your D's weight range given by CAMHS is far too low. It seems time and again there is a habit of teams setting a target range of at or below the 50th centile on BMI charts. We of course are not all 50th centile people - half above and half below. Her body will behave as if it is still starving at this level, as is normal with anyone who has lost significant weight. As per Kartini's post she will need to be above that 50th centile. If your D was 76kg at 1.74 this puts her around the 85th centile of BMI - which is within normal ranges for this height. You can keep your own records and plot them on mygrowthcharts.com

These are US charts and there are UK charts here, which are very similar but you will have to print out and plot them yourself. 

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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.
Torie

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Reply with quote  #41 
Thanks for the clarification.  I feel confident that you will get your d to a proper weight for her.  Sucks that we can't rely on CAMHS etc. to figure this out properly and have to figure it out on our own.  Maybe next century ...  xx

-Torie

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

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Reply with quote  #42 
My apologies, here is the chart

Attached Images
Click image for larger version - Name: growth-2-20-girls.png, Views: 14, Size: 76.31 KB 

__________________
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.

wheresmywand

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Reply with quote  #43 
Thanks deeni. I'll try and work out how to do that.[rolleyes]

Hi again Doris, yes farmers certainly are a breed apart. 2.5 years in and the minute things start to improve a bit ...[mad]
I just wanted to say that I was exactly the same as far as being so overwhelmed I struggled to read the posts and always kidded myself our d was different or not as bad as those who were giving me perfect advice. And I eventually stopped reading the forum and that made me sick with guilt everytime I thought about it because I basically knew ... well, that I shad to start again and do it the proper way.

So if anyone out there is just starting out don't let this take any longer than it has to. This, the advice and support you get on here, is the real deal. 

Also I still have no idea what my d's IBW should be or what to aim for. She was a heavy baby and in the top 3% until she was 3years when our regular weight records stop. I don't think we ever visited a GP after that, or very seldom, because she was just normal and healthy, certainly no weight done but I have all her height growth on the wall. Then at the start of 2015 she was 65.5kgs and 178cm (14years). Sorry to hijack this but can anyone tell me if you can work it out from this small amount of info. Presently she is back to that 65.5 and has grown 1cm in height (I'm actually hoping she's more but weighing in 2 days). So I'm just keeping going because I'd like to see her at at least 67.5kg which would seem about right for our family shape (or actually a bit bigger than that) and I think is BMI 21. 
All the best Doris, sorry to hijack I didn't mean to just rambling...


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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.
Mamaroo

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Reply with quote  #44 
Hi, I've included my d's weight/height as well as BMI chart for those with big babies. She was 4.78kg (while her sister was 3.67kg). Currently she is back onto her historical curve, with a BMI of 22. Wheresmywand, when looking at your data, I would say it is off the charts for height (well above the 95th percentile), while her weight is at the 90th. If at 3 years she was at the 97th, I would say that her weight should be close to the 95th at least, so I would aim for 72kg (this is just my opinion, I'm not a doctor, nurse or medical anything). As a teenager, I was on the chubby side, as well as a lot of my friends, but came our 20s and suddenly without trying we all lost our 'puppyfat'.

There is a saying here "state not weight", how is her state of mind, if she is still anxious around food, then she might need more weight.

Sending you all a lot of hugs!
pdf weight height for age.pdf     
pdf BMI new.pdf     


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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.
wheresmywand

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Reply with quote  #45 
Thanks Mamaroo, heck, that has made me go into a tailspin.
I thought we might be pushing it to get to 67!
But yes, I hear you and I'll keep going. Her state of mind is very much better already, less negotiating, really happy and engaging normally with us etc  - 'no we're having white rice not brown' only gets a few minutes half hearted sulk now, instead of comments all through dinner and silence afterwards. FF approach is still very difficult though but I believe I need to push harder in this.
Thanks again and hugs back

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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  #46 
There is a general rule of thumb that many clinicians use of looking back to at least two years or more prior to ED to get an idea of the normal healthy growth curve. Given your D's height and the fact that she was heavier early on - which may just be correlating with height she is likely to need to be above the 50th percentile for BMI. wheresmywand in 2015 your D was around the 67th centile for bmi (calculations based on turning 17 today) with a height on the 99th centile and a weight on the 90th ( I have a great app which works this out). If you get to 67.5kg with a height of 179 today she is now only on the 52nd centile for BMI and 85th for weight. She would get back to her same percentile as in 2015 at 72kg. 

You are doing a great job. 
The app by the way is free. https://itunes.apple.com/au/app/instant-weight-for-height/id1107990045?mt=8

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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.
tina72

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Reply with quote  #47 
We had a similar problem, my d was always a healthy child and so we don´t have that charts for the years 5-17.
I stopped to look for some numbers sometimes last year and just feed her until I saw change in mood and I still do not stop that. She is still very thin and I want her to be able to get a female figure and that is not possible with BMI below 21 I think. There might come some time to thing about stopping to add, but this is so far in future to me now that I do not think about it any more.
Just feed and add. You can think about target weight when she eats normal again. Just my opinion.
Tina72
wheresmywand

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Reply with quote  #48 
Thanks FoodSupport,

Well that backs up what Mamaroo said too so I guess I will just keep aiming higher for now, still a long way to go but it is actually better for me to know what that figure might look like, even though scary.  Her state is improving a bit though so I'll keep monitoring that as well. Thanks again both of you x

Hi Tina, I've really been like you and just keeping trying for weight gain without thinking about it too much (because i knew it was a long way off) but I've been second-guessing myself after some friends made comments like 'I think you can stop with the butter now!'. I wasn't put off by that but I just wanted to make sure in my own head that I'm on the right track to keep going higher.
I just want to tell you that my d seemed to grow a butt and boobs almost overnight as soon as she hit just over BMI 20 -  so I think maybe your d's curves could be on their way very soon.

Love to all [wave]

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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.
tina72

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Reply with quote  #49 
No stop with butter. No matter what friends say [wink]. ED patients need much more fat for brain recovery than normal people.

"I just want to tell you that my d seemed to grow a butt and boobs almost overnight as soon as she hit just over BMI 20 -  so I think maybe your d's curves could be on their way very soon."

Thank you for that piece of hope. We are heading that now so I hope we will see something in the next months. It would be some reward that she could accept.
Tina72

EC_Mom

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Reply with quote  #50 
Let me add that we parents need to NOT BE AFRAID OF WHAT ED IS AFRAID OF. This was one of the crucial mantras back in my dark days of refeeding my d. 

It is definitely on us to NOT be afraid of weight gain, of fat, of curves, of BMI above 20 or even above 24 if that's what's healthy for our kids. We have to not be afraid of desserts, calories, fats, all those things about which most of us have learned fear.
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