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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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melstevUK
I have come back on the forum after a few months away.

Haha!  It seems when my d is doing well I can keep away but when she is ill I feel the need to come back - even though I don't need the support for myself.  This is just the way it is.....

Firstly - to all those with children in the 15-18 year old age bracket.  If you haven't got the support to push way up and beyond the weight gain necessary to get your child back to full health - don't blame yourselves.  In so many instances the clinicians do not know your child and so not understand how much weight gain they need to push for.  Keep pushing yourselves for a weight at which your child looks 'right/healthy' - and don't accept any compromise on this with clinicians.

Secondly:  if your child has lost weight and fallen to a bmi of 13 or below - I have to say in all honesty that I think the slow response to getting your child eating and gaining weight may have been hampered by the delay in getting your child an immediate referral to ed specialist services.  GPs in general don't really understand eds or what they can do to stop weight falling and so a delay in a referral to specialist services can mean further weight loss - this is a big weakness in the system.  But if your child has fallen to a really low weight - the reality is that you have a long journey to get a sustained recovery in place.

I am currently campaigning, through the networks I belong to, of considering that early intervention needs to be seen as keeping a bmi of going at a level of 16 or above.  I really do not believe that 'early intervention' can be described as anything other than this.  When ed patients, particularly anorexic patients, turn up at the GP and wait for referrals and then have to be hospitalised because they are at such a low weight - this is not 'early intervention'. This is crisis management and allowing patients to drop to such a low weight has such a huge impact on the brain that it really is not desirable.

FBT is being introduced for young patients - but is not always successful.

So - what is the point of my post? 

Ultimately I want to say that, if your child descends into an eating disorder in the early teens and it takes a long time for a SERIOUS intervention - then forgive yourselves and accept that the systems in place did not appreciate the severity.

Secondly - if weight gain/preventing purging behaviours is not the sole focus of your team and they do not use performance indicators to assess how they are doing - again, forgive yourselves.  Any team which does not accept weight gain/stopping purging or exercising as a major focus -is not committed to recovery and ultimately does not understand these illnesses.

And lastly - if you feel you are in a 'chronic' state with the 18 - 20 year old age group, ultimately there really is hope for a recovery.  This is such a young and tender age for anyone with an ed who has not received really focused care, in which the clinicians really know what they are dealing with and try and push the patient through to the best point possible.  Please don't give up.  Look after yourselves and look and think about what you want and think your child should be doing five years down the line.  Don't give up because of the hopelessness of the present. Think how you can encourage your child to move forward.  My own d has done fantastically well but is in relapse mode. But she has more understanding of her illness and condition than she did when she was 18. She just has to tolerate the extra weight needed for a recovery. We have been at this nine years and she is 24 - but finally she is cooperating and wants to make that final push for recovery that she was unable to fight for at the age of 18. The brain continues to mature and function, even when nutrition is not at its optimum. 

I don't want to discourage anyone with a young ed child - but ultimately the reality tends to be that unless you have really amazing clinicians who push and push your child through the terror and heartache of recovery - you get stuck in a slow and chronic path,and helping your child find a meaningful and worthwhile life needs to be a big focus in the bigger picture.


Believe you can and you're halfway there.
Theodore Roosevelt.
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happiness
Hi melstevUK,

I had a very similar experience with my GP and the fact that you are trying to campaign for early intervention is exactly what needs to be changed in the system.
When I took my daughter to the GP her BMI was 14 and the GP just said oh well, just try and eat more, go on holiday and come back in about 4-6 weeks. No blood test, no ECG, nothing. She had no idea! We have lost such precious 4-6 weeks where my D lost more and more weight and i had no tools to stop it. If she would have sent us straight to a specialist we could have started refeeding straight away. I do blame this GP as I think she should have known or at least refer her immediately. When we got back from holiday she lost more weight and her heart rate was so low that I had to take her to A&E....

Good luck with the campaigning. Let me know where you are campaigning as I would love to contribute!
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melstevUK
Sadly, this is so typical. A bmi of 14 is an extremely low weight and GPs need to be educated about presentation of patients with low bmi and how they need to react.

My nephew is a GP in England with around 15 years experience and experience of 3 anorexic patients.  Part of the problem seems to be that GPs see themselves as generalists, and would be reluctant to intervene in any way when they recognise an ed. They really don't understand the importance of preventing further weight loss or as seeing that they and their team at the surgery could intervene.  They see their role as referring on to specialist services.

I don't blame GPs - because they have no training about how they can help create a structure around further weight loss. But this needs to be on the agenda when ed patients present at the surgery.  My own d had a bmi of 16 - and I knew there was a huge problem. But the GP took the line of not presenting a face of panic, and referred her to a dietician, while another GP wanted to refer her to a gastroenterologist, because my d was complaining of feeling full and not being able to eat.  I realised there was a huge mental health issue going on - but the delay to getting that referral and me not being able to get her to eat meant that she had lost even more weight before she was seen by CAMHS.

It is this interim period that needs to be analysed and looked at - a patient with low weight needs to be told to start eating.  Resistance indicates the presence of an ed.  There should be no blame - only a desire to analyse how best to support a patient at that critical time.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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sahmmy
Wow, happiness, that is just frightening. Don't beat yourself up for losing weeks. You did the right thing all the way. We are taught to trust our healthcare providers.

Maybe the better solution, instead of depending on providers to catch and know what to do, is to do some serious campaigning among parents. Maybe it should just be considered normal parenting to weigh our kids at home on a regular basis, or at some pharmacy somewhere, and keep up with the growth charts. We all need to be educated on what to watch for: dropping across 2 solid lines (e.g. if previous weight between 50th - 75th percentile, and the kid drops below the 25%ile line) - start feeding until the kid is back up into their previous "channel".

Parents can also calculate BMI, so if BMI drops below, say 18.5 - a boundary for "underweight", start feeding.

Parents will pick up on it faster, know where their kid generally should be, and can intervene more quickly with rightful parental loving care.

In fact, if government school districts wish to keep their noses in the BMI business, maybe kids should be taught in school about growth charts and tracking their own weight in the appropriate channel. It would be a good topic for health class or approached as a topic in a family/parenting/home economics class.

My other d (non-ED) went to the Pediatrician for a check-up. I explained that we have ED genetics/sister and we need to watch carefully in younger sister. The Ped explained to me on the growth chart how they like to see the kids between the 10th%ile and the 75th%ile to avoid obesity. I was shocked at her understanding. I can tell you, my s, the oldest, who has always been 90th - 100%th percentile in height and weight, would be one unhappy camper at the 75%ile. Same for my non-ed d, if she dropped to 25% after growing her whole life at 75%ile, she would be one miserable person to live with!

Cheers to big boys, capable of providing strength to support a family.  And to healthy, girls with extra reserve, necessary for nurturing life!

Love*Power*Fullness
d=18, R-AN, Generalized Anxiety Disorder. Refed at home with information gathered from this forum and lots of books. Relapsed. Refed. Relapsed. Refed. 17 sessions with an excellent individual therapist. 19 sessions with unhelpful dietician. 3 sessions of DBT (didn't like it). Psychiatrist available if needed. Prozac - fail. Lexapro - fail. 5HTP - fail. Clorazepam/Klonopin = major improvement, only used when necessary. Genomind SLC6A4 short/short - not able to process SSRI's.
d=15, lost 14 lbs in 8 months, Ped [nono]diagnosed as a crystal on a hair in the ear canal
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concerned62
My d is 18 with a bmi which currently fluctuates from just under to just over 12. All I have to say is that I am so very fortunate she wants to get well and initiated treatment herself. I don't how those of you with resistant adult children cope.
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TouchandGo
melstevUK wrote:

Ultimately I want to say that, if your child descends into an eating disorder in the early teens and it takes a long time for a SERIOUS intervention - then forgive yourselves and accept that the systems in place did not appreciate the severity.


YES. So much yes. When we first started seeing the psych they never said anything when she told them she was purging her food, or constantly weighing herself. They weighed her every week, but never said anything even though at each weekly app she had dropped. Only finally decided she might have an eating disorder when her bmi went from 24 to 20 in only a few months. It took me a long time as well to realise we had a real problem, that it just wasn't her anxiety controlling her actions here. It's hard to forgive myself knowing that so many warning signs were ignored.

melstevUK wrote:

I am currently campaigning, through the networks I belong to, of considering that early intervention needs to be seen as keeping a bmi of going at a level of 16 or above.  I really do not believe that 'early intervention' can be described as anything other than this.  When ed patients, particularly anorexic patients, turn up at the GP and wait for referrals and then have to be hospitalised because they are at such a low weight - this is not 'early intervention'. This is crisis management and allowing patients to drop to such a low weight has such a huge impact on the brain that it really is not desirable.


I would even argue at keeping bmi at 19 and above for early intervention. It's frustrating, being roadblocked by everyone because my d isn't quite below 16. She can't be treated inpatient until she drops below it, and all she sees that is a challenge. And she keeps dropping, a lot slower now that I'm trying to get weight on her, but still dropping. Honestly, it won't be long till we reach that mark and I'm dreading it. I can't do this at home, but she can't get help until she loses even more weight.
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melstevUK
unsure,

I am really sorry for what your are going through.

I write:

'I am currently campaigning, through the networks I belong to, of considering that early intervention needs to be seen as keeping a bmi of going at a level of 16 or above.'

This is because, in my experience, because of all the shilly-shallying around, when a diagnosis of an is finally accepted at the GP stage, many patients have already dropped to around this level of weight.  It is at this stage - when a diagnosis is accepted, that the GP should really try and stop weight plummeting any more, but so often during the wait for a referral things get worse.  It is this period where I want to see big changes made.  It is a bit of an arbitrary number but if you can catch patients around this stage - there is a much better chance of getting a recovery started and the impact of the illness will possibly be less.  The hit to the brain when a patient drops to a bmi of 13 and lower in particular is huge.  There are patients who are really ill at a much higher weight - if they are tall, for example - but in general it seems that there are faster and better outcomes if you can step in and treat really early.

Ideally the bmi would be higher - but often by the time parents get on to the fact that something is wrong, weight is already falling.  

You write:
"I would even argue at keeping bmi at 19 and above for early intervention. It's frustrating, being roadblocked by everyone because my d isn't quite below 16. She can't be treated inpatient until she drops below it, and all she sees that is a challenge".

This is actually a separate issue because your d is already under ed specialist services - in which case if she is 'stuck', in an ideal world they should be stepping up to a more intensive level of intervention.  Technically a psychiatrist can hospitalise an ed patient at any time - it is just they tend to wait until patients are really sick before they do this. However, if your d is making no progress - she should consider asking for a short hospitalisation to get support to 'kick start' the weight gain process.  Don't accept being told that they will not hospitalise her until she drops further.  Make the point that with no other illness do we not intervene until patients are nearly dying so why should ed patients be any different?  You can also argue that it is cheaper in the longer term because your d will only need a short hospitalisation whereas if they wait until she drops down to a very low bmi she will need months.  Tell the psych that you are both stuck and how are they going to help?  
If you try and be reasonable and assertive and not aggressive, they may be supportive of her having a short IP stay - even though beds are often hard to come by.  Your d is still very sick and needs help.  And if they still refuse, suggest they try this treatment protocol because it may actually be successful.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Francie
Hi melstev, Good luck with your campaigning and your d's recovery. So glad she gets it. You are more than halfway there!

Best, Francie

Francie

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melstevUK

Thank you Francie.  D is at home and for the first time ever, is happy to let me take full charge of her meal plan.  There has been a huge shift in her approach and ability to cope with eating more and weight gain.
We can actually laugh that, in a supermarket, I have to look longingly at all the chocolate goodies while she looks longingly at the diet products!  

I truly believe that, having come through all the demands and insecurities of adolescence and got herself together in a career, she is finally at a stage when she knows that she has to come out the other side of this illness once and for all.  

She allowed me to take photos of her today - because she can only appreciate how thin she is in photos.  In her mind she feels fat - and however much she tells herself that this is not the case, she FEELS it.  

I think it would be worthwhile for all ed service clinicians who treat anorexic patients to encourage patients to accept photos - so that they can see themselves in a photo, because their brain and the mirror tell them lies.

Believe you can and you're halfway there.
Theodore Roosevelt.
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mjkz
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She allowed me to take photos of her today - because she can only appreciate how thin she is in photos.  In her mind she feels fat - and however much she tells herself that this is not the case, she FEELS it. 


If she can see that she is too thin.  My daughter can look at pics of herself when she was at her lowest weight and still sees herself as too fast.  It is really bizarre too because she can look at pictures of people who get too thin for other reasons (i.e. cancer, WWII photos of people in concentration camps) and see them as too thin but if she knows that the person has an eating disorder, she thinks the sick pictures of them look the best [confused]  If she sees before and after photos of someone anorexic and weight restored, she thinks the weight restored pictures are horrible.  The first time I tried to see if that made any difference, she had a panic attack so bad she passed out from hyperventilating.

If they can see that someone else is too thin or even pictures of themselves, that is great and a wonderful tool.  We are now working with the mind set that she has a form of "dyslexia" for want of a better word.  She cannot trust what she sees in the mirror when it comes to weight.  She can't guess other people's weight accurately either and really struggles with what looks normal.  She could never work in retail because if someone asked her if this dress made his/her butt look too big, her answer would be it wouldn't matter what his/her butt was covered with-it would still look too big.[frown]
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Francie
Dear melstev,

This is great:

D is at home and for the first time ever, is happy to let me take full charge of her meal plan.  There has been a huge shift in her approach and ability to cope with eating more and weight gain.
We can actually laugh that, in a supermarket, I have to look longingly at all the chocolate goodies while she looks longingly at the diet products!  

This reinforces for me the importance of maintaining a good relationship through it all. It has put you in a good place to be able to work with her in her recovery. So glad for you and your d! 

Best wishes, Francie

Francie

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Torie
I hope many here will informally join your worthy campaign.

For my part, I drop off the FEAST pamphlets with the school nurse and doc, and take the opportunity to tell them just a little each time. For example, how battling AN was the worst experience of my life (and for sure my d's). How important it is for AN sufferers to hear POSITIVE messages about food/eating/fats from the docs and nurses. How lucky we were to get an early diagnosis before D was "underweight" and professional encouragement for my d to eat whatever I tell her. That any weight loss in kids is a red flag. 

Together we can chip away at the misinformation our "professionals" suffer from. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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StepbyStep
Dear MelsteveUK
A really great post thank you. I am also in the UK have added sporadic posts in the last year. I feel bad in that is seems it's only when I feel so alone that I appear to post on here.

My D is the age group you stated. 17years old 18 next May. Currently still in a relapse. Long story but we were let down by her pysch at CAMHS ( she was under them for depression and left ED team) who when I asked for support saying I could see the ED returning, spoke to ED well, my D who said "no, leave me alone all is fine, my mum is just nagging me. Leave me alone and all will be fine!!)" He took the ED's side. Several months later, I was getting desperate. I could see the weight dropping off. He still would not listen and the ED words out my D's mouth were very convincing. THIS was a pysych who new she was in recovery for anorexia and had been seeing her for a year!!! Relapse occurred after coming off antidepressants and whilst starting college. It took me writing a letter to my GP copying it to the pysch and ticking a list of ED behaviours from the B-eat website to get him to take notice. SERIOUSLY!!! By this time my D's weight had gone from 20bmi to 16.

We had no support at all over the Christmas period for three weeks whilst we were waiting for CAMHS ED appointment. Worst time of year.

Soooo, seven months down the line restored to 18bmi (90%) having been given a target weight of 90% instead of a safer 95% and told, (I kid you not,) by the pysychologist. A different one especially for ED's, that it was feasible D could be discharged at 90%. D hung on to that and at start of August declared herself recovered and wanting to be discharged. This with bad anaemia due to dietary issues. ED team said yup okay, we advise against it but there is nothing more we can do!!

I do understand you cannot drag D there but I do feel horribly let down by the target weight given to her in the first place. I fought tooth and nail to keep her above hospital admission weight and keep her in college, (which is what she wanted.) My husband is no support and we are currently going through a divorce as well. D spent time with boyfriend and familythis summer and has done wuite well but seems to have a lost a little weight. Have not commented on this.

Decided to stand back for a few days and see how she is doing. We are on day two. Day one, not eating enough. Day two, in bed late, suggested she needs to eat ( 3pm now) and FRED ( Friggin Ridiculous Eating Disorder _ our, D does not know we call it that, ) was back in the building telling me to F and P off when I calmly suggested she might want to think about eating something. That is clearly FRED's voice. Here we go again.....

Boyfriend goes off to Uni tomorrow, thankfully not too far away, that is a real stress factor plus last year of her college looming and our divorce not helping. No idea anymore where to go for help or support. Am totally alone supporting her now. The verbal abuse is cutting and hurtful in what is usually a close relationship that we have. Sometimes I know it can also be teen behaviour.

I have been on the verge of a breakdown with it all ( close family bereavement last Xmas as well as holding down a four day a week job,) just really do not know how to move forward with this now. GP also said their is nothing more they can do for now.

It seems that the standing back and letting her get on with it and trying to support is all I can do. If I get firm she closes in and I do not want that. She wants to get through to college and go to Uni so that is a good thing and all positive. I was going to set up a parents self help group as I have a friend going through it with a younger child but at the moment and a couple of others and they are all desperate to talk and share but I do not have the mental capacity for it right now. I will do it when I can.

So sorry for this lengthy diatribe. I am reassured that there is hope and know we are on a long journey. This is four years now. If anyone has a clue where else to go to for any advice with older teens please let me know.

I wish everyone on here the best of luck and try and keep strong. Try and share with good friends, try and get time out for yourself and I hope where partners are involved they are supportive. I have read several books on the matter and spoken to those that are 'recovered'. It's a hell of a journey and takes it's toll on the carers and families as well as the one with the illness.

I hate this illness so much. I am also trying to spread the word locally, share experiences and be open about it help de-stigmatize it.

Keep strong everyone. As Melstev said - there is hope!!
















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melstevUK
StepbyStep,

Thank you for commenting.  Let's not beat around the bush - you have been let down big time by professionals who are no better than a chocolate teapot (this is my current favourite phrase for people who are utterly useless in their jobs. At least it makes me smile...)

You write:

"that it was feasible D could be discharged at 90%. D hung on to that and at start of August declared herself recovered and wanting to be discharged. This with bad anaemia due to dietary issues. ED team said yup okay, we advise against it but there is nothing more we can do!!"

This is utter c**p and we won't pretend it is anything else.  Clinicians who capitulate and don't see the need to push for a strong, safe, healthy weight let families down time and time again.  They could have done more and said:
"We refuse to discharge you because you are still underweight and we want to see you back at xxxx kilos.  Allow mum to support you.  Get on with it.  This is what needs to happen"
Such a simple approach and what a difference it would make to everyone, patients and families alike.

However, you are stuck with the reality of your present situation and I am sorry you have been at breaking point and having to go through a divorce (which your d's illness certainly helped to bring about).
All I can suggest is that you encourage and support d with her dreams and ambitions, continue to remind her that she is ill with an illness that is not of her choosing, that you will always be there for her, that the clinicians have let her down - but that in spite of what she thinks, she really needs to put on more weight. Don't argue or demand, just quietly state the facts.  I bet she is aware of the reality underneath it all. Perhaps you can also say that, if she loses weight big time, you are prepared to have her sectioned if needs be.  Also remind her that her brain cannot function at its best if she is not eating enough.


Believe you can and you're halfway there.
Theodore Roosevelt.
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melstevUK
If you stay calm and make her realise that you know what you are dealing with, just how ill she is, that you love her and will always fight for her to have the life she wants - you can then add that, while she does not want your help, it is difficult to make progress.

When you are one to one with the patient and with no back up - taking charge of eating is virtually impossible and you need to bring other skills and interventions into play.  If you have a look at the principles of motivational interviewing you may find it helps.  Tuning in to the slightest of comments which indicate a willingness to move forwards just a little bit becomes second nature - and you learn to comment on the positives and keep moving things in the right direction.

It doesn't harm to talk about the lengthiness of the illness - and of how much better her brain will be a few years down the line when she has moved out of adolescence into young adulthood.
Believe you can and you're halfway there.
Theodore Roosevelt.
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