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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Adlih64
Hello,
My daughter has just turned 16 and stopped eating properly around 4 months ago.  She has lost two stone and dropped 2 dress sizes in this time.  She is constantly tired and unwell and school work is suffering.  She is down to 1 meal approx 500 calories per day but even what she will eat us becoming more restrictive.  G.P was going to refer to ED clinic but she wouldn’t consent and we were told “we’ll she can’t be forced to do anything she doesn’t want to”.  No amount of pleading from me or her father is having any effect.  I am off work with stress and it is effecting my other children.  I feel so helpless and don’t know how else to get her the help she needs. 
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Kali

Dear Adlih64

It is very distressing and frightening when our kids become unwell and I hope you can get your daughter to agree to connect with resources where you are. If you are comfortable letting us know where you are located there may be other families in your area who can give you some ideas about accessing help on the ground where you are now. Balking at treatment is not unusual. But if she has lost 2 stone, that is significant and she would need to have a full workup at the GPs office. What did the GP check when you went in? I'm attaching a pdf of the AED medical guidelines for eating disorders, if you want to take a look.

There are several books I can recommend if you want to learn more. There is a very steep learning curve when our kids first become unwell, and I for one, floundered and was at a loss to figure out how to find effective help for the first 9 months or so.

When your teen has an eating disorder by Dr. Lauren Mulheim.

https://www.amazon.com/When-Your-Teen-Eating-Disorder/dp/1684030439/ref=asc_df_1684030439/?tag=hyprod-20&linkCode=df0&hvadid=312136554937&hvpos=1o1&hvnetw=g&hvrand=5074972746747342010&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9003552&hvtargid=pla-527480835052&psc=1

And Eva Musby's website and her book:

https://anorexiafamily.com/

and of course the feast family guides on the feast-ed.org website.

I guess the things that helped me in the beginning were:

I am very stubborn and I ran after my daughter with a plate of food and didn't take no for an answer.

Learning about evidence based treatment, why it is important, and trying to find it in our area. When she became critically ill and needed to be in residential treatment, we were lucky to find a truly amazing situation for her which was the beginning of her return to health.

Reading as much as I could about the disorder and becoming well acquainted with symptoms, well educated about what to expect and learning how best to support my daughter.

I got myself help in order to be able to help her. That was in the form of both support on this forum and the guidance of several therapists who worked with ED patients. I saw them without my daughter to try and brainstorm ideas about how to handle certain difficult situations at home and of course how to refeed her. I spoke with parents whose children had recovered to try and create some sort of roadmap for myself about how to proceed.

This is a treatable illness, and with time and love you will be able to help your daughter regain her heath. It may not seem like it now. The key will be to figure out how to get her to eat again, and I know that seems impossible but read around on the forum and see how other parents have managed and see if you get any ideas about things you can try. Try taking a look at some of the hall of fame posts. There is a lot of information there about what other families have tried:

http://atdthalloffame.feast-ed.org/

I'm sure other parents will be along soon to welcome you and make suggestions about how to get started refeeding your daughter.

warmly,

Kali


 

Food=Love
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Enn
I am sorry you needed to find us. Right now I am worried about your d’s medical stability.
I do hope your doctor did blood pressure lying and standing and her heart rate.
if there is a significant drop of her BP or a significant increase in heart rate with the postural changes she may need admission to hospital.
if she has a low heart rate of 40 she should also be admitted. 
Some guidelines also state that if eating 500 cal per day or less then that also is part
of the criteria for admission to hospital.

I would get her to hospital and some have us to literally carry them
on their backs to the car to get them there. Take those guidelines that Kali posted with you. 
the  doctor should also have weekly medical assessments for her. 
Pleading is not going to work. All privileges may need to be suspended. The first and only job for her should be eating. Some have sat at the table for hours to get a meal in.
My d listened to authority. I wonder if the doctor said to your d that she had to eat what was in front of her otherwise she would be admitted on the spot, if that would help. Ask the doctor to do that, it may get things started. 

Please consider taking her out of school. She is too ill. School motivated
my d to eat.
No food no school. It takes us parents awhile to figure out how to get our kids to eat. I wish it was just to tell them to eat.
please ask all the questions you have.
We all wish to help.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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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Foodsupport_AUS
Welcome to the forum, I note from your registration that you are in Scotland. There is no doubt that the rules for capacity give a lot of autonomy to young people in the UK, however this does not mean that you have to just wait for your D to decide to do something. 

Firstly since she you can set house rules for appropriate behaviour, you can require her to go to various services in return for things. At present she is financially dependent on you which gives you some leverage to work with. Ultimately the mental health act is used to "force" people into treatment once their health becomes seriously compromised and your D sounds as though she is not far from that line. 

In the UK they use the Junior MARSIPAN guidelines and NICE guidelines to assess the need for treatment and admission. Many GP's have little understanding so taking a copy of guidelines with you to make sure that the correct tests are being done  is also really helpful. 

It sounds like she probably needs to be out of school with regular visits for assessment every few days. If she continues to restrict further she may need to go straight to emergency for hospitalisation. 
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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ValentinaGermania
I am not sure how the law is in Scotland but in most countries there is a possibility to get them into IP when there is a medical necessity. It is not correct that you need to wait until they nearly die. AN patients do normally not engage in therapy and do not want to get better at that state. But you are the parent and you are in charge for her medical sanity.

With that small amount of food her health is in danger. Did the GP check her blood values, heart, blood pressure (lying and standing) and pulse? It is possible that she needs to go to A&E to get assessed. If she refuses to eat totally (no food or water for 24 hours) bring her to A&E asap please.
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Adlih64,

Can you make an appointment with another GP?  She is 16 and not 18 and they should have insisted that she is extremely unwell and needs to be fast-tracked to your local ed service.  In your place, I would tell d in no uncertain terms that you will not stand back and let her get any worse, school stops, she starts building up what she eats and you get her life back.  
When it gets to this stage it can be impossible to imagine that they can eat again.  If your d stops drinking it is a medical emergency and she needs to be taken to A and E straight away.
Did your GP weigh her and calculate her BMI?  Can you phone the GP and say you want the referral asap and that you will ensure your d gets there.
If she is only eating 500 calories or less her weight is going to drop by many kilos over the next couple of weeks.  
Do not take no for an answer either from your GP or from your d.
Unfortunately many of us have been able to be quite easy going parents with our children until an ed sets in - you have to turn things around and start to be quite authoritative and insist she is extremely unwell and that she needs help.  
Phone your local CAMHS and explain the situation.  They may be able to advise on the quickest way to get a referral. 

Possibly if your d had a quite high BMI she does not look unwell and that is why the GP did not feel there was cause for concern looking at her.  
You can try getting a three meal three snack structure put in straight away - you will have to build up the calories quite slowly initiall.
Aim for 800 calories for two days and then build up by 200 calories every two days thereafter.

If you push her to eat and tell her that she has to get eating properly again, if she has an extreme reaction and turns into the monster from hell, you will know you need a lot of help. If she is weak and you can persuade her that she needs to trust you and that, however eating is scared, she has to do it, maybe you can turn things around from here.
Believe you can and you're halfway there.
Theodore Roosevelt.
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deenl
Hi Adlih64 and welcome,

Eva Musby is in Scotland and knows the system very well. You can email her directly using a form on her website, she may be able to direct you to appropriate services and help you navigate the system. She also does coaching and can help you develop a plan to get your daughter to the support she needs.

Please also ensure that you get the support you need in coping with the stress of it all. I needed medication to deal with the anxiety and lots of baths and sitting in the massage chair to unknot the rocks where my muscles should have been. 

While I don't want to overly worry you, I suggest that if you notice any worrying health signs like dizziness/fainting, seizures, suicidal thoughts, multiple episodes at purging or she does not eat much for 48 hours or drink for 24 hours please either bring her to the A&E or call an ambulance. Please confirm with your GP what signs they suggest mean a trip to the hospital as I am not a doctor and may have missed something. We had to frog march our kid to the car, child locks on and one parent right beside him and frog march him, screaming into the hospital but it saved his life. Needs must when the devil drives.

Wishing  you continued strength and courage,

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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CED123
You might be able to self refer to the eating disorder team- you can in England I think. Have a look at the beat website which might have more info  https://www.beateatingdisorders.org.uk/

it certainly has info on how to insist your gp refers. 
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CED123
Plus also our ED team was very clear that gillick competency (the control that a 16 yr old has) couldn’t be used to refuse treatment, only to access treatment that parents refused (eg the pill). 
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CED123
Our GPs reaction was “eat more hummous’ and come back in a month but when I insisted on a referral he did do it. The ED team then has to see you within 4 weeks. 
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melstevUK
CED123,

I am not sure if the four-week rule is in place in Scotland yet - but our CAMHS services would know that anyone who had dropped to eating 500 calories a day needed to be seen immediately and the patient would get a quick referral.

Adlih64, do let us know how you are getting on and let us know how we can support you.   I hope you have been able to get that all-important referral and appointment.
Believe you can and you're halfway there.
Theodore Roosevelt.
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ValentinaGermania
CED123 wrote:
Plus also our ED team was very clear that gillick competency (the control that a 16 yr old has) couldn’t be used to refuse treatment, only to access treatment that parents refused (eg the pill). 


This is really great and sounds like a perfect team. I wish all Cahms teams would see that this way, so many parents here need to fight because of gillick and that is not helpful at all.
Keep feeding. There is light at the end of the tunnel.
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Adlih64
Hello everyone,

Thank you you very much for all your responses and suggestions.  I do appreciate it and sorry I haven’t replied before now.  Things have become more difficult over the past few weeks with intake and arguments at home around food and effect on siblings.  I did manage to get her to another GP today who checked heart rate and BP only after I asked him to. Heart rate okay, BP low but said typical of young girls.  She again refused to be weighed and for referral to ED clinic and had same response of she’s an adult so can’t do anything but please come back in a few weeks.  I work in mental health myself and am familiar with the law but approach can be everything and I just find it baffling that they start with saying nobody can force you to do anything before even discussing treatment options. It took a lot to get her there today and I have used any leverage I have available I can’t  see her doing this voluntarily.  Feel we’re just waiting for her to become critically ill whilst she can’t acknowledge there’s a problem.  Again many thanks for support, it means a lot. 
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Foodsupport_AUS
I can only guess at how frustrated you must be. Did the GP just do BP and heart rate in one position or was it check lying first then standing? Was there any changes. It is true that blood pressure can be on the low side in young women but it should be stable and not drop to any significant degree on standing. If it does or the heart rate rises rapidly it is a sign of urgent cardiac risk. Is it worth you arranging an appointment for yourself to discuss your concerns - armed with information - prior to a further revisit. 
Just throwing some ideas out there. 
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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Adlih64
Hi,

No just taken in the one position.  I did have an appointment myself yesterday and discussed my concerns.  I also took along information from guidelines previously supplied.  I pushed as much as I could for referral and asked to leave it to me and her dad to get her there.  There is an appointment to see a dietician in a months time outcome likely to be told that it’s the wrong service which we already know. 
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CED123
Is there anyway you can self refer to camhs? (I don't know) or at least ring them for advice on how to get referred?
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sandie
Yes you can self refer where I am in England.
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Adlih64
Afraid not, it’s frustrating that parents can self refer up to age 18 in England but Scotland requires a G.P referral.  I will contact CAMHS myself though and see if they will offer some advice.  
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ValentinaGermania
Can you see a different GP to get that referral? Did you already try to contact Eva Musby? She is in Scotland and she knows your system best.
Keep feeding. There is light at the end of the tunnel.
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Adlih64
Hi Tina 

Yes I did contact Eva and she gave me some advice.  That is the second GP I have saw over 3 visits and today’s one is head of the practice, standing firm on requiring consent.  He has asked to see her again in a few weeks kept talking about gaining trust.  
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ValentinaGermania
Oh gosh, I am so angry on your behalf. That is really not what is required with an ED.
Can you take her to A&E if she feels dizzy, has a pulse below 50 or does not eat or drink for more than 24 hours?
Maybe taking her to A&E would fasten things...
Keep feeding. There is light at the end of the tunnel.
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Enn

Are you able to get a BP cuff yourself and do orthostatic vitals (the lying and standing BP and heart rate) yourself? IF her HR is less than 40 to go to  ER ASAP 
If there is a 20 mm Hg drop systolic (the top number) and./or 10 mm Hg diastolic the go to ER, with the guidelines that were posted previously.
Can the emergency doctor make a referral to an ED clinic directly where you are?

I am so sorry that the doctors feel that their egos are more important than your child's health. It is hard to confront the doctor's I know. 
This where/when I go into "In your face" mode. This is when I make an appointment myself with the doctor and show them all the issues one by one. I also tell them that if my child gets more sick under their watch a formal complaint will be made. I also pointedly tell them that they need to respect me, and that as her mother I know what is best for my child and that there is no harm to refer her, but if they don't and should have, then I will be reporting them tout suite! 
I would have all that documented ( love documentation) take a witness as well, and spell it out clearly. and in writing. If they say they will not refer after that discussion, I would tell them, "so let me get this straight. I see my d is ill and you will not help me get the services she needs for a proper assessment." I would also ask them what training they have in ED and how they reached their decision. 
I want to call them up for you and have it out with them- myself. 
I want to empower you if you need it. I want you to stay strong against this stupid system. 
Sending a hug. 


When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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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Enn

How can we help you feed her more?

Is she in school? Should you take her out? Are you able to get incentives/rewards/ consequences in place so she eats? No eating no school, no cell phone, no friends, no going out, etc...
That would the first step even when she gets assessed. 
What is she eating now? Is she over exercising? 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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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Enn
As I think on this more.. can you see the doctor more frequently than in a few weeks. She could deteriorate quickly. And I would ask exactly what her BP was. Could you do weekly visits so they can assess her weight and other parameters like the blood pressure? 
If the doctor felt she needed an emergency visit would your d agree to go? 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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 Adlih64,

I am so sorry that your GPs are being difficult. We had the same issue; the GP missed laguno and didn't even weigh him, said it was perfectly possible for a boy on the cusp of puberty to survive on a slice of bread and half a dinner and to come back in a month if we were still worried. We continued searching for help and within that month he was admitted for his own safety.

This website, Feed Your Instinct, is Australian but can be used from anywhere in the world. Here is a quote from the very first page
Quote:
Parents often know when something is not quite right with their child


There is a very useful checklist with all the subtle and not so subtle symptoms of a descent into an eating disorder. You could fill in the form, print it out and bring it with you to the doctor as it is difficult to think of all the changes you have seen when you are on the spot. Then you will have facts to refer to and not only your concerns.

It seems to me that a power struggle has developed because of the doctors unwillingness to trust parental instincts. I wonder if you could get another visit alone where you show them the list and say that you are not certain that it is an eating disorder but you think that there are enough worrying symptoms to warrant an assessment by a specialist sevice. Ask them what other explanation there could be. You are willing to consider other possible diagnoses but you are not willing for them to ignore such concerning symptoms. I have found it helpful to say that I understand that they couldn't possible have detailed knowledge of every single illness and that is why an expert assessment would be useful. What harm can it do? Whereas not doing anything could very lead to harm.

I have always found it necessary to be very well informed so that when they say X, I can say "Well, I think you might be mistaken, according to Guideline X ..." I find that when they cannot palm you off with excuses and generalities, they begin to take you seriously and are more likely to do their job. So in your shoes, I (or your husband) would be doing the following research (although I am raging that you have to, they should know this). 
  • read Eva Musby's page on the guidelines in Scotland. They seem to be generally out of date so the guidelines from England are frequently used. Take notes.
  • Printout the Junior Marsipan Guidelines, from page 16 to page 26. This is the part that offers guidance on the assessment by the GP of the need for further care. Much of it, I do not understand myself but your GP certainly should.
  • The bits I do understand concern me and should be part of your conversation with the GP. Under the BMI and weight section your daughter appears to be in the amber (alert to high concern) zone. You said she lost 2 stone (12.7kgs) over 4 months (about 17 weeks) which equals an average weekly loss of about 750g
  • In the Disordered Eating Behaviours section your daughter appears to be in the red (high risk) zone. Acute food refusal or estimated calorie intake 400–600kcal per day.
  • There may be other sections that you can see are concerning. Highlight them to the doctor.
  • I would request that he uses the guidelines to assess the heart rate and rythm, orthostatic changes and temperature at a minimum.

If they say that she refuses help, say from what you have read this is to be expected but to do the referral anyway and that you trust that the Eating Disorder Service will be able to recommend tips for getting the patient to the appointment having dealt with many similar patients. Perhaps ring the ED service before you talk to the doctor, ask to speak to the intake person and explain your situation and ask if they have any advice.

I have found that if I am calm and matter of fact and just keep saying things like "OK, so you think ... but what about ..." and force them to actually be accountable for their opinion that I sometimes am successful. Alternatively, sending them an email where you can lay everything out and have the time to think about your words and be sure to include a line that you require a reply within X days. And ring them up if they do not reply.

Wishing you strength and courage,

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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