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day_by_day Show full post »
OneToughMomma
Day by day,

I will be 100% completely honest with you. The list below is stuff I know for sure.

  • CHAMS have truly let your d down.
  • If your d stays at this weight she will not get better. 
  • If you leave her as she is life will be easy for a while, but she could become seriously ill later, like maybe die.
  • If you prod the sleeping beast (ED) and challenge him by interrupting behaviours, then life will be hell for a while.
  • If you try you might lose her.  Honestly she might run away. Mine did, but she came back.
  • If she gains weight she will probably get better, but it might take a while.
  • If you win the war against ED you will have given your d the greatest gift of all.
  • your window of opportunity is closing as she gets older.

I'm giving you the unvarnished truth because it is an ugly situation you find yourself in, and the decision should be made with as much accurate information as possible.

I totally get not wanting to push this, I really do.  My d hurt me, physically and emotionally.  I had to wear long sleeves.  She ran away from home. We knew we were risking losing her altogether if we insisted on full nutrition, but we decided it was worth it.  I could not sit by and watch her slowly starve, and if she were healthy but hated me, then I would have been so happy for her.  That was, as I saw it, my role as a parent, to put her health first.

My d's ED was by far the worst thing that has ever happened to the Tough family (btw I chose the name to remind myself to stand tough).  But now the joy of having her eat ice cream with friends and knowing her prognosis is really good are our reward.  She loves us unconditionally, and misses us dreadfully now that she has gone to uni.

You do have some disadvantages at this point.  You currently have no good clinician to help you.  Let's be honest, the odds are not in your favour in the UK, but maybe a parent here can recommend someone.  Your d has entrenched these behaviours for years.

However, you also have advantages.  You love her.  You want what is best for her. She lives at home with you.  You have us.  We will help you all we can.

I'm really sorry you are here.

xoOTM

PS, and re you being 'negligent', look in my signature line at how long it took us to get a plan and get our d well!  We do the best that we can, and should not waste time beating ourselves up!

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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Sotired
Please don't bother with feeling guilt or shame or any of those wasted emotions.its a sure way to stay mired in the muck of mental illness.look at what you CAN do, rather than what you can't.
You CAN :throw away the measuring scales.
You CAN insist that actually she isn't weight recovered and needs more weight on.then duck as the ed storm hits.
You CAN talk to her about how she want to go about recovery-more calories at home or going residential.
You CAN still try to section her if she starts refusing treatment.
You CAN enlist others in the battle if you have them available.your husband,your sister or brothers if they are helpful.
If she stops eating or drinking to 'punish'you-and I have been in this position a lot-then set the clock in your head from the first second she stops.once it has been 24 hours,off to a&e for full assessment she goes.again her choice is that you will take her by car or by ambulance or the police will take her.but go she will.
These are tough things to do.so if you have support available then use it.do not stand on pride because it's too lonely.and scary.
Before she turns 18 you still have some options,so use them now.trust me when I say that you are braver than you think you are.most of us are.i would never have interrupted doctors rounds three years ago but I did it two days ago and got my d the treatment she needed.
Always try to think about what you CAN do.its an easier way to deal with this.and no more feeling shame or guilt.your d is still alive and I'm sure that's down to you.be proud,you are a warrior.
Sotired42
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Torie
day_by_day wrote:
I feel that if D gained, it might trigger her into restricting again.


Yes, that makes perfect sense, doesn't it? I worried about that too: If my d wasn't happy and sta rted restricting at __ kg, won't the same thing happen again if she gets up to that same ___ kg? I think that was the same thinking her incompetent doctor had, which resulted in us receiving the bad advice that she could stay at a weight that was too low for her.

What I'm going to say next is really hard to believe, I know. But over and over and over, one person after another here has reported that as the weight goes on (or, more commonly, after the weight has been fully back on for a while), they feel BETTER about their weight/size/shape/self than they did at the lower weight. Makes no sense at all. After reading so many experiences here to that effect, I decided to grit my teeth and have a go at pushing my d up to and a little past her previously highest weight. As is common, the last 5 kg were hard and scary. But then she was magically much more comfortable with her size/weight/shape. 

I think you said your d historically tracked at a BMI of 20%, right? And then went up to 50% for a brief time? If that's right, I don't know what to make of the 50% period, but I definitely think her genetic make up wants her to be at least at 20%, and Ed will torment her at any weight below that. If you choose to aim for a higher weight than she presently is, I would suggest these goals:

  • Do not talk about numbers. Not calories, kg, weights of ingredients, etc. I know others here (e.g., PsychoMom) has great suggestions for navigating that minefield.
  • Do not make promises about target weight because there is no way to know how much will be "enough." In fact, you will need to break the news to her - and keep reminding her - that it is normal to gain a little each year through the teen and young adult years. Your goal is for her to have a normal life.
  • Push her to 20% BMI and then keep her there a few months. If you see any improvements, just keep maintaining that weight and see if the little improvements are adding up to bigger improvements. (The improvements might be so painfully small as to be hard to notice; you are looking for ANY improvements.) If you don't see any improvements, consider adding another couple of kg.
  • Others here can help you plot her historic growth. Some here have been surprised by what they find when the height and weight are properly charted - sometimes what was thought to be their intended trajectory was in fact incorrect because many times restriction started much earlier than we ever guessed.

I'm just listing some suggested goals - we can help you brainstorm ideas for how you might go about this if you would like. Please know that someone is usually here 24/7/365 as we are located all over the world. You're not alone. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Torie
OneToughMomma wrote:
Day by day,

I will be 100% completely honest with you. The list below is stuff I know for sure.

  • CHAMS have truly let your d down.
  • If your d stays at this weight she will not get better. 
  • If you leave her as she is life will be easy for a while, but she could become seriously ill later, like maybe die.
  • If you prod the sleeping beast (ED) and challenge him by interrupting behaviours, then life will be hell for a while.
  • If you try you might lose her.  Honestly she might run away. Mine did, but she came back.
  • If she gains weight she will probably get better, but it might take a while.
  • If you win the war against ED you will have given your d the greatest gift of all.
  • your window of opportunity is closing as she gets older.
Great list, OTM. Anyone contemplating this challenge deserves candid information to help in evaluating the potential risk/rewards.

I think you nailed the main points; I would just like to add a couple of thoughts:

  • Heading away to university while even a little underweight is REALLY dangerous for our Ed-kids. The first year of university is challenging enough even for those of robust mental and physical health. Our kids can and do go downhill FAST and far.
  • If your d suffered from depression, OCD, etc. before getting hit with ED, very likely those issues will need to be addressed after she is well and truly weight restored. (It's rare to be able to address them adequately when weight is too low.) If those issues appeared but only with or after weight loss, there is lots of hope that adequate weight (and time) will suffice to resolve them. (But no guarantees.)
  • Eating disorders are the deadliest mental illnesses.
  • We don't judge. If you decide not to tackle this now, it's safe to come back later for information and/or support. We will always be here for you.
I will be thinking of you and your d and sending positive thoughts your way. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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day_by_day
I just came back to this topic and there are tears in my eyes. Everyone here has been so unbelievably kind, thank you.

Last night, I broached the subject of weight gain with d. As expected, the reaction was angry and far from cooperative. However, she has agreed that if a health care professional says she is too low, she will gain. I booked her an appointment with the GP for Monday on their online booking system and she says she will go! I feel that this is a really positive step as they will have her CAMHS notes on file and possibly be able to refer us to ed services again. If not, from what I have heard said here, they will at least tell her that she is underweight which should convince her of the need for change (I see this as my biggest challenge right now).

I've just been using the NHS online calculator and if I can get her up to 50kg, she would be back in the 20th percentile for her age and height as her growth charts suggest she should be. That's (only!) 3kg. I feel as though I might be able to do that, after all it's 10kg less than she had to gain last time. I just need the support of professionals on my side.
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Psycho_Mom
Hi Dear Day by Day,

PLEASE don't leave the fate of your d and her future, to some random thing that some possibly educated or possibly uneducated health professional might say.

One of the things that has helped me the most is to understand that I, as a parent, am in charge of the health decisions for my (very vulnerable) child. Health professionals are advisors, but parents and caregivers make final decisions. IF you explain this to your d (who will protest, no doubt, but she will protest anyone and anything that says she needs to gain weight) you are insulated against the comments of some stupid doctor who thinks that menses=health, or somesuchlike.

It is very hard to up the weight of someone with active anorexia. Believe me I know this.

The only thing worse is not doing it.

Please keep reading all around this site, for information on how people have required and helped their sufferers to get back to health (read the Magic Plate page, and search for the YA threads, search for target weight, read Colleen's posts, and you could also go on the Kartini website and read their info on how to determine target weight.)

My d's target range was initially set at 130-135. She got her period back at 122, and the doc said, well, maybe 122 is OK. I had read enough on this site to know to ignore the doc, and kept going. Menses are one indicator of health, but not the only one. Gradual cessation of ed behaviors is another. 

What I told my d was that I had read and studied extensively, and had studied her growth chart, and consulted various experts from around the world (people on this forum!!) and that I had determined that her weight range was x. She said a lot of blah blah blah about me not being a doctor, and I said bla blah blah I'm your mother, and until you act like like a normal person, I'm going to keep requiring you to gain weight. (That was an effective line, you might try it.)

If you feel like you need the support of professionals (and gosh, woulnd't that be nice!!) can you talk to the doctor in advance of the appointment? Explain that you KNOW your d doens't weigh enough because her ed behaviors have not improved at all. Get a feel for what the doc will say, and if s/he seems like an idiot, cancel the appointment. 

And do keep asking quesitons, and keep us posted, and 
welcome!


D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Torie
Psycho_Mom wrote:
If you feel like you need the support of professionals (and gosh, woulnd't that be nice!!) can you talk to the doctor in advance of the appointment? Explain that you KNOW your d doens't weigh enough because her ed behaviors have not improved at all. Get a feel for what the doc will say, and if s/he seems like an idiot, cancel the appointment. 


Yes yes yes, that's really important! If they say they can't talk to you because of your d's age (I don't know what the rules are in your area of the world), they can always LISTEN to you. 

My d's doctor was dangerously, damagingly wrong with her ideas about what would be a proper weight. It sounds like that has been your experience so far, as well. It's very common. Bad help is worse than no help at all - much worse.

Good luck. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Sotired
Can I just suggest that you ring the doctor and tell him/her all your concerns.also make it clear to the doctor they cannot say her weight is fine-unless they want to live with your anorexic child.do this before the appointment.guide them in questions.make sure they do an orthostatic heart rate (lying to standing,blood tests to check for any changes(that's how I learned my d was indeed purging though she swore she was not).make them aware that things are not ok,that this weight is too low and you need their help to get your d back on track.you need them to be an ally,not an impediment.write a list of what you need done and why.then ring.otherwise if you are anything like me you will forget half of it!
You are doing well to get the process restarted.dont forget to throw away the scales for weighing food.good luck,
Sotired42
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day_by_day
Hi all, not sure I will be able to call before the appointment because its first thing on Monday and the surgery is now closed for Sunday. However, I do take on board what you have said and I will be going to the appointment with d to make sure that the situation is explained in full. I know this appointment won't be a cure all but it is at least a first step towards getting d the professional help that she needs. I am going to draw up a list of behaviours and bring along d's growth charts from when she was younger (I always used to measure her weight and height once a year which I now worry may have been triggering in itself for her). D doesn't want to throw away the kitchen scales yet, but she says that if the doctor agrees it would be best, she will. So, I guess one more day won't hurt. Given d's age, should I expect a direct referral back to CAMHS? Or is it more likely that they will send her into adult services a month or two early?
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Sotired
If you get a choice keep her in children's treatment as long as you can.once they are in the adult model it's much harder to get the help.take care,
Sotired42
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deenl
Hi day-by-day,

Just to echo the lack of trust in unspecialised GPs. That was our first step. Our 13 y/o son had lost an estimated 5/6 kgs, was eating slice bread for breakfast, slice for lunch and a 1/2 a dinner, he already had lanugo and bones were easily visible. Doc said he 'had seen worse' and S could live fine on that amount of food and was going through a growth spurt! [mad] We didn't believe him but GPs are the gate keepers to further treatment in the Netherlands. Ended up that we caught our son on the way to commit suicide and we eventually got treatment.

Email the doc now with URGENT in the subject line so that he reads it before your appt. Speak to the doc alone for first 5 mins, or let him read a list of bullet points from you even in front of your daughter. Do what you need to do.

By the way, I didn't own a scale or ever weigh my kids and the beast still came. Parents CANNOT give their kids an ED. Sure we can make mistakes but no more, no less than most parents. The trigger can be anything so if it's not one thing then it will be another if your kid has the genetic tendancy for an ED.

Wishing you every success tomorrow and may the doc be enlightened and say the right things,
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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Kali
Hi Day by Day

I think it is great that you and your d. will go to the dr. and talk about this, it is an important first step for your d. I am glad that she is cooperative about going, it shows that she wants to try to be well even if she is struggling with the ED habits. Here is a thread that discusses the habitual behaviors of people suffering from anorexia and some recent research. My layman's understanding is that unlike people who do not suffer from AN the part of the brain which is associated with habits and compulsions is activated when someone with AN is choosing food and that changing those actual habits and rewriting the brain synapses is very important in order to help them achieve a remission/recovery. Your d. is now at the age where the rewiring process in her brain is in full force and I think that it is very important to try and change the habitual behaviors at this age rather than waiting any longer and letting them get more entrenched, since her brain is still developing. Replacing those habits now with more "normal" habits around eating is key. And I think you have some gut feeling about this since it is the habits you are questioning which you observe keeping her at the state she is in now.

http://www.aroundthedinnertable.org/post/anorexics-process-food-choices-in-a-very-different-way-7931661?highlight=habits#gsc.tab=0

Wishing you and your d. the best outcome and I hope the dr. will be helpful and start her on her journey towards a healthier weight and fewer ED thoughts. Be very insistent that your d. have treatment. It seems, unfortunately, from what I am reading on this board that sometimes in the UK they seem to wait until sufferers are at a very low weight before treating in residential. (and any UK moms and dads please please correct me if I have a mistaken impression—it is not my intention to bash the system in the UK) Do not accept that; if your d. is having ED thoughts and compulsions than she is ill. It is better to treat stage 1 cancer than stage 4 and an ED should be no different. 

Kali


Food=Love
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day_by_day
Thanks once more to everyone here. The GP surgery does not have an email so there will be no way to contact them until Monday. Unhelpful, I know. However, I am going to make sure they are very clear about exactly what health risks d is at at this weight, get her pulse and bloods done etc and insist on referral to some sort of specialist services. From what you have told me, this is the bare minimum I should expect from them. I'm actually feeling positive about this. I think deep down d wants change as badly as I do, but she needs someone who isn't me to tell her it's required.
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Torie
Just want to underscore how important it is to do everything possible to keep the "professional help" from doing harm:

I was taking my d to her doc for weekly weigh-ins with nurse. After a while the doc said she needed my d to see HER not just the nurse. I called and spoke to the doc before the appt. I told her I KNOW my d needs to continue to gain until she reaches at least __ pounds. She said she would be more comfortable with ___-1 pounds to be under that particular round number. I reiterated that I liked ___ pounds better, but I could live with her telling my d one pound less than that.

I went into the appt with my d (age 16 then). After a bit, she sent me out. Then she told my d her weight was fine - she didn't need to gain more and it would actually be OK if she lost a little. I didn't know about this until the next meal when my d told me what she said. I know we don't always get correct information from our Ed-kids so I called the doc, and she confirmed that yes, she had indeed said this to d because "It's important to keep them from fixating on a number." I absolutely read her the riot act to hopefully help her think twice before doing this to someone else's child in the future.

I have taken my kids to this group of docs for >20 years. She is the youngest of 4 and her older sibs have shined in every way - no drugs, sex, alcohol - good grades, polite - no reason at all to question my parenting skills and every reason to believe in them. AND STILL SHE DID THIS TO MY D!!!! Made it so much harder for her to eat enough.

Needless to say, that clueless doc was indeed clueless and my d needed to gain 3 kg more than the number I had picked as "I know she needs at least this much." This was confirmed by a world-reknowned ED expert later.

So my advice to you is to try to stay in the room. Maybe you can ask for a minute alone with the doc before s/he sees your d? Maybe tell your d before you go in that YOU are the one responsible for her well-being and YOU make the final decisions and this visit is just to hear the docs OPINION. (Agreeing with PsychoMom here.)

I feel so bad because I think it seems I go around trying to scare everyone, which is the last thing I want, except ... I'd feel even worse if I didn't forewarn those who seem to be walking in my footsteps.

Good luck. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Kali
Yes, be careful. My d. was told at her 17yo checkup that her weight of 103 was fine and that she should come back a few months later for another checkup.
Of course she came home and told me that 103 was a good weight...ugh,  and by the time a few months rolled around, d. was in residential treatment.

Kali

Food=Love
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K63
Hi day- by- day, hoping doctors visit goes well and it's important he understands fully the importance of weight restoration My d has been quite resistant to increasing weight and we are about 2 kgs from it now she is almost 19 .she wants to get better is tired of this illness and what it has taken from her . I know that by staying at a low weight will not help her and all this does is allow her to become a chronic anoxeric . She understands this and sometimes in the past says She want to get better but Ishe doesn't want to put on weight . Each week I try to increase meal plan and or reduce exercise. I don't want to help her to continue with this illness I want to help her recover . While my d was IP they never put the emphasis on continuing to bring up weight above low healthy bmi it's been here on the forum people who have from their experience and research that shows the importance of getting them back to their pre illness weight .
Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
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ooKoo
We had a gp appointment Friday.

The GP we saw has always been good in the past, but on Friday he told my d that she was fine (she doesnt look underweight (yet)). He pretty much dismissed everything that I said. My D has a low heart rate and bp because she has been restricting massively for 6 weeks. But he didnt pick up on that (her heart rate was probably racing after walking along a corridoor to get to his consultation room). I was there asking for help, but he didnt pick up on that either. I even had a bag packed in the boot of my car in case we were sent off to hospital.

I am sure you have it all under control, but be careful. Good luck! x

p.s. I have also had a GP tell my D that she could stop eating for three weeks, and she would be ok to do so....
UK - South East

19 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions. 
2017: CAMHS CBT. WR, dropped out of 2 different colleges and started an apprenticeship.  Started having grand mal seizures and was diagnosed with epilepsy in Nov 2017. Sacked from job because of this.  Tribunal ensued.
2018 - doing a Psychology degree through Open University and working in retail to pay her way in life. Relapses with eating disorder in June 18 and Nov 18 😢. 

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
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deenl
ooKoo, my son's heart is always about 20 beats higher in the docs than at home because he is nervous and scared! Would you consider getting a Blood Pressure monitor for use at home. We use it every second day. It gives my ED son and us some comfort and allows the doc to see what his 'real' BP and heart are.

Best 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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ooKoo
deenl wrote:
ooKoo, my son's heart is always about 20 beats higher in the docs than at home because he is nervous and scared! Would you consider getting a Blood Pressure monitor for use at home. We use it every second day. It gives my ED son and us some comfort and allows the doc to see what his 'real' BP and heart are.

Best wishes,
D


That is a good idea, I will look into that. I have a heart monitor on my phone, which I have calibrated against a GPs, and it was exactly the same, so at least I know it is accurate. I use that on her several times a day.
UK - South East

19 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions. 
2017: CAMHS CBT. WR, dropped out of 2 different colleges and started an apprenticeship.  Started having grand mal seizures and was diagnosed with epilepsy in Nov 2017. Sacked from job because of this.  Tribunal ensued.
2018 - doing a Psychology degree through Open University and working in retail to pay her way in life. Relapses with eating disorder in June 18 and Nov 18 😢. 

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
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deenl
Our experienced ED pediatrician gave me the measurements that indicated action was needed. These, of course, vary depending on the age of the child.

Cheers,
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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day_by_day
I will go in to the appointment tomorrow forwarned by the advice of your good selves and not allow d to be alone with the GP for one moment. For now, I think I will need to cross my fingers and hope for an educated clinician. I do wish there was another way if going about this but sadly the GP is always the first port of call here and I can't think of another way to get d a referral.
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mjkz
Quote:
I will go in to the appointment tomorrow forwarned by the advice of your good selves and not allow d to be alone with the GP for one moment. For now, I think I will need to cross my fingers and hope for an educated clinician. I do wish there was another way if going about this but sadly the GP is always the first port of call here and I can't think of another way to get d a referral.


You may not be able to communicate before you go but I always find stating what I am looking for first in a first appointment like this is often helpful.  For example perhaps saying something like "My daughter struggles with an eating disorder.  She has done a great job in keeping her weight out of the danger zone but she still has many symptoms.  We have been talking lately about the benefits she might get out of gaining a little more weight in terms of giving her more freedom with food choices, etc. X Y and Z. We needs some labs done but we all understand that normal labs don't mean there is not problem, etc."  That way the GP knows you want to hear she needs to gain weight and can help her understand that gaining weight will help her with the last eating disorder symptoms she has.

I know when I've gone into appointments with my daughter where it is a new person I don't know and can't communicate with ahead of time that stating what I want him/her to deal with has been very helpful so that he/she doesn't go off into lala land about her weight being fine.  This might be why my daughter hates me coming along with her. [biggrin]
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Playball40
Hang in there Day by Day.  I really do understand what you are going through.  My 12 year old daughter gained 34 lbs in one year and has lingered at 84 lbs ever since.  She is "technically" at a healthy weight (blah blah blah).  She is not.  She still struggles every day - resists fear foods - hides or avoids when she can get away with it - etc etc.  It's really difficult and I wish I could get weight on her the way they did at Rogers (PHP). 
Caroline
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day_by_day
Appointment didn't go well at all I'm afraid.

I started off by telling the GP why we had come: that I was concerned about d's weight and eating habits and I felt that she 1) needs to gain and 2) should be referred to an ed specialist.

The doctor looked took her pulse and blood pressure, temperature (all normal). Then, she measured d's weight and height, referred back to CAMHS' records, and congratulated d on maintaining.

I said that surely d should have gained over the last two years but the doctor told me d was still "well within" the healthy range and as her physicals and period are normal, I shouldn't worry.

I brought up d's eating habits (I.e. Measuring all her food and rigidity around food types). So, the doctor asked what she eats in a typical day and of course said that d is eating a healthy diet. Well yes, I know she is eating the right amount but it's the behaviours aim concerned about!

When I asked for a referral back to CAMHS, I was told in no uncertain terms that I would be wasting the NHS's resources. The doctor near on told me off for even bringing d in to the appointment!

So of course, d now has the validation she needed to carry on exactly as before and I am unsure of where to go from here.
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ooKoo
Oh no!  I had hoped that your GP might be a lot more useful than mine.  Clearly not [mad]

Would a dietician be helpful at this stage?  Get an appointment with a different GP, asking for a referral to a Dietician who specialises in Easting Disorders.  She/he may then be able to refer your D to the relevant CAMHS service.  

Have you rung CAMHS for advice at all?  They may give you some good tips and advice on how to get a referral to them - possibly via School Nurse/College Nurse (if there is one).  There is a new service (Sussex) in our area called the Early Help Service (laughable,  I know) and they filter referrals to CAMHS and all sorts of other services in our area (it is a way of ensuring that the right referrals go to the right people) - and as far as I am aware, parents can self refer to this service.  Not sure what part of the country you are in, but it might be worth a Google, in case they have the same service.  It is very new in this area. x
UK - South East

19 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions. 
2017: CAMHS CBT. WR, dropped out of 2 different colleges and started an apprenticeship.  Started having grand mal seizures and was diagnosed with epilepsy in Nov 2017. Sacked from job because of this.  Tribunal ensued.
2018 - doing a Psychology degree through Open University and working in retail to pay her way in life. Relapses with eating disorder in June 18 and Nov 18 😢. 

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
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