F.E.A.S.T's Around The Dinner Table forum

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Annie_OR
My 16 year old daughter was hospitalised with RAN in October of last year.  We don't think she was restricting for a long time before she rapidly went downhill - she says she started in the middle of the year.  When she was admitted to hospital she wasn't eating anything and was in hospital for 7 weeks.  From December to early February we re-fed her at home.  In February she returned to school and I have been giving her recess and lunch at school since then. 

When she was hospitalised she was 41 kilograms and she is now 63 kilos.  She is 168cms tall.  At our FBT meeting today our therapist suggested we need to move to weight maintenance.  My daughter says her eating disorder thoughts have reduced and she now has them about 20% of the time.  I'm not sure I believe this because she is keeping a journal and in the journal she has mapped out a plan to get down to 46 kilograms. Eating takes a long time but she is getting faster and she also has panic attacks although they have reduced in frequency and severity over time.  She also self harmed in hospital and recently has cut marks into her wrist using her fingernails.

I would really appreciate advice on:
- whether I should accept the therapist's advice and reduce the amount I am feeding her to ensure she maintains her current weight.
- how have people done this.  Is it simply a matter of reducing the calories/size but keeping up 3 meals and 3 snacks a day?  Or do I drop one of the snacks?  I don't want ED to see a window of opportunity here.
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tina72
Hi, this is a very good question and I am happy that you ask that and do not rely blind on what the therapist suggests.
If there is still 20% ED thoughts left (or even more) and if she has still ED behaviour like eating very slowly and panic attacks and self harm I would NOT change anything at the moment. This is way too early.
She is at a BMI around 22 at the moment which is normally on the low end to see brain recovery starting. Some needed much more for that to start. She might grow in the next months. She will need to develop a female body. All that needs weight. When you cut back calories now you risk a relapse. Does she have her periods regularly by the way? Does she have any fear food left?
We go for state not weight here. State is the sign for giving them more freedom, not weight.

To answer your second question, if she is mentally in a good state for at least 4-6 months (no ED thoughts, no ED behaviour) you will start to give her back control very slowly and normally they lose a bit weight by learning how much they need to eat. So to have a buffer for that before you start that is a good idea.
My d is 2 years in recovery now (age 19). She still eats 3 meals 2 snacks (we never had 3) because she needs to have a constant blood sugar level to feel good. When she skips a meal she gets ED thoughts within an hour (she normally has none). I still plate lunch (biggest meal here) and she plates herself all aother meals and snacks. It took us a year from WR to get there. No relapse until now (knocking on wood).
Keep feeding. There is light at the end of the tunnel.
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Annie_OR
Thanks so much for your advice. She has had 3 periods.  In terms of fear foods, she is generally pretty compliant and eats what I put in front of her but she often eats it really, really slowly (breakfast can take 1.5 hours). She refuses to eat mayonnaise and hummus but she didn’t like these before ED came to town. 

What should I be looking out for in terms of improved state (apart from eating more quickly, and no self harm)?

Also, she has asked to join a basketball team with her school friends. I think it is pretty casual and social but I’m not sure whether she should exercise at all yet. She hasn’t shown signs of exercise compulsivity despite training at a competitive gymnast before ED hit. 
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tina72
"despite training at a competitive gymnast"
That is a bit concerning. If it is a non competitive basketball training and it has a definitiv start and end and is only once a week or so you could give it a try. The social part of it is important, maybe they go for dinner at McD after training together and such things. But it is possible that she loses weight with that so be careful and maybe give it just a try for 4 weeks and then see if she can do it or not.
If you decide to allow that this is another reason not to cut back anything because that will need extra energy.
And if she is in school again only for some weeks she might need extra energy for that, too. My d lost 1 kg eating still the same amounts just due to learning when she got back to school. We needed to increase intake 2 or 3 times in that phase.The brain needs itself about 500 calories extra a day just for thinking. You see, you are really very early days...

"What should I be looking out for in terms of improved state (apart from eating more quickly, and no self harm)?"
First I would try to work on eating more quickly. Set a time frame of about 30-45 minutes and if she has not finished in this time she needs to drink a supplement. Often it is enough to announce this new rule to see them magically eat more quickly 😉.
What should you look for? Good mood. Good state. No talking about food, body size. Singing in the shower. Laughing. Going out with friends. No signs of depression. No self harm. Snacking something from a bowl although it is not tea time. Asking for seconds. Deciding between two items for snack and taking the more caloric item. Such things.
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Her eating behaviours sound like they are of concern. Do you think she is close to the weight or above the weight she would have been if she hadn't got sick? If she is at her highest ever weight plus a bit she may be where she needs to be weight wise but it does sound like there are a lot of concerning behaviours. Prolonged times for eating meals is particularly an issue, and if she is taking 1.5 hours supervised, I would suspect without supervision there would be no eating. Being able to volunteer it is time for her snack, eating foods outside her meals or asking for foods that are calorific are all positive signs of less thoughts. 

Although it sounds like she may be medically fit enough to join a basketball team her other behaviours raise a question mark over why she wants to join. If it is truly social giving her activities for socialisation may help to dampen those ED thoughts further. It all comes down to what is involved and can she eat extra to make up for the exercise. 
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.
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scaredmom
Hi,
I will throw in my thoughts. How  long has she been at this weight? It takes a lot of food to keep their weights up for a while. Until her weight is stabilized for a long while ie months I would not be cutting back. 
Many here had to go much higher in weight to see the brain improve. 
Also if you read in her diary she wishes to get her weight down again, handing back control or lessening the calories would not be what I would suggest.
i think maybe adding back a social activity like the basketball and ensuring she eats more for that would be my first step. If she cannot eat for the exercise, that is very telling.
i just wish to understand the timeline here. You say  she was refed at home Xmas to February, do you mean 2018 to 2019 ie just this past month? If so that is way too early to give her any control , IMO or to decrease calories. I found at the high caloric intake even after a few months of WR it was enough to maintain her she did not gain. The body does find the set point at the higher calories. It is too early to decrease and too early to hand back control. Too many red flags here.
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Kali

Hi Annie_OR

Welcome to ATDT and I hope you will get good support here.
Do you have your daughters weight charts from her pediatrician's visits so that you can see what her growth curve should be?

How much did she weigh before she became ill, and is she back at that weight now? As a rule of thumb many people try to restore their kids to their historical growth curve and then some for a cushion before going to a maintenance weight.

As for her state, it sounds similar to my daughters when she was first weight restored. Sometimes meals were very slow. She still wanted to lose weight and had urges to harm herself. You are doing great...just keep feeding her at regular mealtimes and snacks. We did not see improvement in state for a very long time. 

warmly,

Kali

 

Food=Love
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tina72
Just wanted to add that I do not know one single parent that did things too late with giving back freedom and cutting back calories but I can give you a long list with parents that did things too early (me on the list, too).
Keep feeding. There is light at the end of the tunnel.
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mimi321
Quote:
I would really appreciate advice on:
- whether I should accept the therapist's advice and reduce the amount I am feeding her to ensure she maintains her current weight.
- how have people done this.  Is it simply a matter of reducing the calories/size but keeping up 3 meals and 3 snacks a day?  Or do I drop one of the snacks?  I don't want ED to see a window of opportunity here.


Based on the behaviours still lingering and this very early stage, I would definitely not reduce the amount she is eating. With increased size and activity levels comes higher energy demands. Plus, she still has growing to do. 

When my D's bmi was 22 last September, she seemed to be in a pretty good state with a small cushion above where her period returned. I kept feeding and her bmi kept creeping up to 23, 24 in the next few weeks/months. I saw even more improvement in her state. I slowly started reducing the extra fats, and this slowed her weight gain. She is now between a bmi of 25 and 26, where she is maintaining more or less without extra added fats, but still eating 3 meals and 3 snacks. A couple of weeks ago I sensed a bit of ED returning, waking up at night, stressing about homework, anxiety about school, food pickiness and I quickly started topping up her fats again and she seems back on track again. And yes, I would agree, dropping a snack or reducing food volume sends a very bad signal to ED. 
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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Ronson
Personally I wouldn’t reduce the amounts.  We have continued the same amounts for my d even though she is weight restored and her body keeps her maintaining and small gains with growth.  If meals are still slow and her thoughts are still there and she has a plan to lose I would keep feeding.  Our dietician spoke initially about a maintaining diet for once d had gained.  D obsessively asked when she could go onto the maintaining diet for months.  Interestingly once she got to a certain weight she stopped asking and has never mentioned it again.  Push for weight not state - it is only when these things become unimportant to them that we can start to think about doing them. 

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Annie_OR
Thanks everyone for your advice. This forum is a lifesaver and I am incredibly grateful for all of your insights and advice.

Tina72 -  I will announce the rule about ensures and see how we go.  When we've pressed for her to eat faster in the past she has had panic attacks so we backed off on pressing for this.  But we can try again now.

Kali and Food Support_AUS -  before ED she weighed around 55kgs and she had had a couple of periods. She is now 63kgs and has had 3 periods.  According to her growth chart she was in the 50th percentile for weight and height as a child.  She is now in the 75th percentile for height and her weight,, at 63kgs, is roughly in the 75th percentile too.  Our FBT therapist said yesterday that FBT is happy if she is at the 50th percentile for weight and that we have been doing really well in re-feeding her.  Our dietician said we should aim for around where she is at now (ie.75th percentile for height and weight).  Our FBT therapist has private sessions with my daughter before she meets with us and I think our daughter expresses concern to her about her weight gain and wanting to ease off at these sessions. My husband also thinks she has gained enough.

ScaredMom - she has only been at this weight for a couple of weeks.  So, yes, it is very early days (although it feels like forever 🙂 ).  She was hospitalised last year (2018) and has been home since December 2018.  She started back at school in February 2019.

Mimi321 - its confronting/scary for me too to take my daughter up to a bmi of 25/26 when she has always been on the smaller side.  I don't think I'm fat phobic and I know this sounds ridiculous but I feel like I need to push through my fear too!

Ronson - I think my daughter is also obsessing about when will will be cutting back on her food.  She said to me yesterday, 'Surely, we'll be cutting back on the amount I'm eating soon'.

Thanks again for all of your advice.  I just have to figure out a way to get the FBT therapist, dietician and my husband on the same page!

Virtual hugs. xxxx






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mimi321
Hi Annie, your D may not have to go that high, just wanted to share my experience, but yes, there are definitely moments of checking yourself and instinctual fears and to push through when needed. 
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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scaredmom
Annie_OR,
We say don’t be afraid of what ED is afraid of ie the weight gain. I found even at high calories her weight stabilized then when she was more of herself at about 4 to 6 months after WR, I was able to decrease the additives first and ensure her weight was ok. At 2 years since diagnosis and 1.5 years good WR she is doing great!  Even This week I have seen such an improvement too. It gets better all the time. It will come for you too! It is hard to be patient after such a stressful time.


I also discussed important things with the team on the phone so d would not know. Do you think that would be acceptable?
That way I ensured we were on the same page.
Being a united front with your h is going to be key here for your d too.
All the best,
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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mimi321
Just wanted to add the fears were mine, not hers. As her weight went up, her body image improved, which was a wonderful gift. 
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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Annie_OR
Thank you!  I find being patient and not worrying all the time one of the hardest things. Your wise words have strengthened my resolve. xx
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tina72
Annie_OR wrote:
Thank you!  I find being patient and not worrying all the time one of the hardest things. Your wise words have strengthened my resolve. xx


That is first thing you have to learn with this disease! 🙂 Every progress is very slow and it is really a marathon and not a sprint so try to spread your energy to be fit for a long run!
But it gets better!
Keep feeding. There is light at the end of the tunnel.
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Mamaroo
Another thing to remember is that her metabolism is going to be high for many more months. My d is WR for nearly 2 years now and only now can I drop the snack after lunch.
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.
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scaredmom
Annie_OR,
This illness takes its toll on everyone it touches. 
If you  need support and care, please get it. In the middle of our fight for health I could not see I needed care, and neglected myself. Sometimes it is others outside of us that see we are burning out. Please take some time for self care, whatever that is for you. 
if you need meds for anxiety it is ok. 
You will get there, because you are already so far along! You are in a much better place now. 
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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deenl
Hi Annie,

We are at the stage where my son's weight is reasonable and his mood is good. He eats everything I put in front of him. We are 3 years in and he still needs 3,500 kcals in order to avoid weight loss. 

Even though we are through the worst, I have found lots of information and food for thought in a book called When Your Teen Has an Eatind Disorder: Practical Strategies to Help Your Teen Recover from Anorexia, bUlimia and Binge Eating. I has really helped me navigate the inbetween phase we are in.

Warm wishes,

D
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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Salome

hello ladies,

this is not a reply but the topic is one I am confused about, so if I should ask somewhere else, please forgive me and direct me.

I am very confused about terms: Weight Restored vs. Weight Maintenance vs. Set Point vs. Ideal Body Weight.

Could you ladies please Educate me in this?

Our D was given a WR (weight restoration range, based on her growth chart etc.,)  I am still confused:

Once she reaches her WR range , she must stay there on whatever amount of calories needed, and then her body weight will gradually fall to it's own ideal weight/set point?

How will I know if her weight falling to the "Set point" is not weight loss or relapse? etc.

again, Annie, et al..please redirect me if I should not have posted my questions on this fine mama's thread.

xx to all.

I am, and will always be, "EDs Worst Nightmare" 

 

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tina72
Hi Salome,
I think it was a good idea to ask that on this thread, that is totally o.k.

It is a big difference how old the patients are and if they are still growing. A child at age 13 or 15 is still growing and has to develop an adult body so has no target weight. The professionals love to set targets and call them weight restored then and tell the patients to maintain that weight then but that is not healthy at all. Normally a healthy child will gain at least about 1kg each year until their mid 20s.
So if your d is younger than 18 and given a weight range that is called a target weight that might not be the right target for her. Normally it is a good idea to check historical weight and go back to that but the weight they reach then must increase with growth.
Set point/ideal body weight means that every body has a genetic weight he feels comfortable with. That has nothing to do with BMI. Some children have always been on 75% percentile and must go back to that or even more.
When you refeed your sick child you will see by change in mood and state when they are weight restored, not by a number on the scale.

To answer your second question, after they have reached the target weight it depends on age what to do.
If they are under 18 and still growing you will not be able to cut back calories as they will need to grow and need more food then. So under 18 normally refeeding ends when they are grown out and before that you will have to add calories and weight every year. Some even grow at that age so the "18" is just a synonym for "adult/grown out" here.
When they are grown out they often need a lot of food/calories just to maintain that weight then. What the ideal body weight/set point is you will now by state. My d for example is 19 now and has a range in which her mood and behaviour is good and she feels good. I need to help her to stay in this range and to lose more than this range will cause a relapse. She still needs to eat 3 meals 2 snacks and the amounts her dad is eating to maintain the weight and not lose again.

I hope I answered your question, if not please ask again!

And I just wanted to add, there are some dads around also here, not only ladies 🙂.
Keep feeding. There is light at the end of the tunnel.
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Salome

Thank you Tina72,

So D , RAN, is now 19 1/2. It appears (hindsight 20/20) she was ill since early childhood (ARFIDS) and her percentiles were always low for weight, average for height. Her BMI were noted low by MD at age 12-14. She says she began active restriction at age 15, right after she reached her highest weight (130-135/ 58.9-61 kg.) at 5'6" (167.6 cm.).

Her Recovery journey began last April 2018 when she came forward for help, went into RTC (Residential Treatment) for 7 weeks, returned home at about 130-135 (too low, but that is how US insurance pays, for only 80-85% WR), so she began an arduous journey from 9/2018 until 1/2019 where she fell to and remained around 123-126 lbs.

Once she was "graduated" from her outpatient treatment center 1/2019 , entirely unrestored in weight, but she worked diligently on her therapies, we decided to take her to a special program for FBT 2/2019.  And it got her on board with us, her parents , as her main support.

She just weighed in yesterday at 130 lbs!!! And I pray this continues.🙏 We had to, with the support of a new FBT therapist, require her to go on "lockdown", as it seems that no matter how many calories I gave to her, her activity level was siphoning it all off.

She was given (By two separate, reputable ED physicians) a "WR" (weight restoration) Range from 140-150 lbs. (63.5-68 kg.), for her current height 5'7.1".(170.43 cm.) We are all tall, her father, her brother and myself. [6'1"(185.42 cm), 6'4"(193.04 cm.), and 5'9"(175.26 cm.) respectively]. But they also said her IBW (Ideal Body Weight) would fall between 130-135. So this is where my confusion is...

It does appear she must have stunted her growth however, during this process.😪

So is that WR range a goal for her to stay at? Or will her brain decide she might go lower, or higher or remain there? Personally I will like to see her go to 155-159 until the needed brain repairs occur, and that depending on her behaviors. She has a history of Comorbids and very serious SH/SA but she has improved greatly despite not being WR.

And we may yet have to keep her more quiet, resting more and give her more calories as she begins to take some courses at the local community college this summer...


I guess we will know better as she progresses with the needed weight gain and I am confident I will know when I see that "Mental State" improvement.

She still has issues when we speak about the needed weight restoration, but she knows it is needed. We do open weighing here at home, as that was suggested by the FBT specialists, and she is handling it well, thus far.

She is eating everything I plate for her, 3 meals, 3 snacks possible extra milkshake. I work to keep her caloric intake consistent, high fats, increasing the carbs now, and I increase or decrease calories for the day, depending on her activity. When she eats out on her own, she will relay to me her intake, but I always add extra that day in her milkshake, "just because" 😊 I challenge her as I see any behaviors trying to sneak back in (leaving crusts or throwing any small amount out, she gets "extra" on the next and any fears such as "food touching" I do fear challenges...) These behaviors have greatly reduced in the last 1-1 1/2 month since we took over 100%.

So my main Q is, and sorry for the long wind! Should her final weight be in the WR range (140-150 lbs.) or the IBW range (130-135 lbs.) that they have suggested? Myself, I believe it must be higher and I must push higher for her brain to repair after years and years of deficit.

I am a sponge for the information, ty!

I am, and will always be, "EDs Worst Nightmare" 

 

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mimi321
I found this to be a good resource for what type of weight gain is typical during pre-adolescence and adolescence and why it is healthy and necessary:  https://www.sharecare.com/health/kids-teens-health/how-weight-gain-healthy-children

I was quite surprised to read the following when I first did, but it is certainly unfolding for us in this way: [QUOTE
  • Children typically gain 4 to 6 pounds per year between age 2 and puberty.

During puberty the childhood growth rate doubles, but because some kids start developing as early as age 8 and some not until age 14. It can be normal for two kids who are the same gender, height, and age to have very different weights. Children gain on average between 30 to 40 pounds (13.5-18.0 kilograms) between ages 11 and 14. A child can gain 20 pounds (9 kilograms) or more in one year during this age range.

]

This holds true for ED kids, and may need a little extra to keep them from falling back into ED because they may not follow their natural cues (or even recognize them) and eat extra when they need to. Probably once they are finished growing and in a good state, you will know the range she needs to keep herself in to stay healthy. 
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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Salome
So, Mimi321, Should I go back to our D's growth chart and history, calculate those yearly weights, and add the deficit to her current weight? The MD specialists said she surely stunted her growth in her height during her teen years.She never put on that much weight through childhood, a couple of years she grew in height but didn't gain anything! 

I am, and will always be, "EDs Worst Nightmare" 

 

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mimi321
Just running out now but will answer later this evening. How old is she now? Did she start her period before ED? Does she have her period now? 
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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