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

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new2this
My daughter is 18 and currently has a bmi of 12.8. Very dangerous, I know but she is refusing all treatment.

Recently, she came to me saying she was scared because the veins in her legs are swollen, easily visible and very painful. They look almost like varicose veins but I thought that was more associated with obesity than anorexia.

Has anyone else had experience of this? Is there a more ominous underlying cause like a circulatory disease? She will not go to the doctor to have them looked at. What will happen if they are left untreated? Is there any way we can self treat them?

Very scared for her. Any help at all is welcome.
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deenl
Hi,

All I can say is the medical fears were the only way I could get my son to a doctor. He is so scared he will manage to go. Still doesn't help with the eating though!

My son's BMI was/is in the same range and I have to monitor his heart and blood pressure every day and he needs ECGs as a heart attack is a very real possiblility. He left hospital today after a 5 week stay to stabilise his condition. Please, please bring you daughter to a doc or get one to come to you.

I empathise totally with how hard it is but medical safety comes before everything.

Email me if you want,
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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Psycho_Mom
Hi,

Your d needs medical care and nutritional stabilization asap. If you let us know what part of the world you are in, members may be able to advise on the best way of getting your d admitted to a hospital. Extreme reluctance and refusal of medical care is a common symptom of this terrible illness, and different people have managed to get them into care nonetheless, in different ways, from getting large strong relatives to sit in the back seat on the way to the hospital, to getting medical guardianship. It also helps to know what you'll encounter when you get to the hospital. 

Complications from an extremely low BMI like your d's can include damage to the structure and function of the heart; increased risk of heart failure and death; reduction of bone density resulting in brittle bones and breakage; muscle loss and weakness; severe dehydration which can result in kidney failure; edema (swelling), and a whole host of other terrible things that you probably know already, including heightened risk of suicide. The treatment for all these symptoms is the same: full nutrition. I cannot see that treating a symptom at home, without refeeding her, would in any way be beneficial, even if it were possible. It would in fact just prolong the time she goes without help getting what she really needs, which is nutrition, likely in a hospital.

Her refusal to get treatment is a symptom of the illness. It's possible to get her in to treatment anyway. Many here have managed it.  this forum, and the support and information I found here, helped save my daughter's life. While my daughter was younger when ed struck, please know that I like everyone here, know how hard and how confusing and terrifying dealing with ed is, but that there is hope, for treatment and for recovery.

best wishes,
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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cjac16
I think this is due to circulatory issues through lack of nutrients.  The valves in the veins are not able to push the blood through properly.  Your d really does need to be seen asap.  Can you take her to the GP to have the veins looked at as a medical issue rather than in relation to the anorexia where you are being met with her refusal to get treatment.  Perhaps the GP will be able to get her to agree to treatment.  
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new2this
Hi, yes I do understand that d really needs to see a doctor. But I can't get her there and I'm afraid in case she has a blood clot and dies through lack of medical attention. Has anyone had experience of varicose veins being a symptom of anorexia? Or do you think we are dealing with something else entirely here?
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Sotired
Hi and welcome.it sounds like you are in a very hard place.it is likely that this is a side effect of anorexia and may indicate something seriously wrong.can you put your d under the mental health act to enforce treatment?or do you have district nurses who could come out and do a medical assessment for your d?im working on the assumption that your d lives with you but these options can still be done if she doesn't.
I am one of the people on here who has had to section her d four times to get treatment though my d was 16,17 at the time.i did this to save her life and have no regrets at doing so.
Even if your d is refusing treatment you can still keep the doctor informed of what you see.i would ring and tell the doctor what I was experiencing.then my d had two choices.either we went to the doctor or she went in the ambulance to hospital.that by the by is another option you have.you and whatever help you can gather keep d in the house while you ring for an ambulance.they are,sadly,used to dealing with belligerence and if you make it clear that this is what they may face then they can prepare for that.she may surprise you at that point and be as meek as a lamb.beccause underneath it all she is terrified.the voice in her head may control her but she knows she will die without help.we ourselves have done the things I am suggesting.my d was put in a car with an Aunty either side.i would threaten the police escort I'd our d wouldn't get in our car.i made it clear that she could fight me but I would find a way like it or not.the whole time I was deeply afraid but I was more afraid of losing my d.
So those are my suggestions.i hope one of them is helpful.kind wishes,
Sotired42
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edbites
This kind of edema means your daughter is in the end stages of malnutrition and at high risk of death. I would get her to the hospital any way you can. Call an ambulance if you have to.
Carrie Arnold Blogger and author at http://www.edbites.com
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Colleen
Yes, please get your d to the emergency room!!  We are not doctors here and can't diagnose.  But what you are describing is very worrying.  Your d is not capable of making good decisions about her health care, no matter how old she is.  PLEASE take her to the hospital!  Let her know she is going, don't ask.  Back to toddler days:  "We can go in the car together or you can go in the ambulance--your choice.  Whether or not you go to the hospital is not your choice."
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Colleen
And make sure that you are with your d 100% of the time that she is being examined!  ED patients are notoriously bad self reporters and are compelled to try to weasel out of any kind of treatment.  Also, ED will distort anything a doctor says.  Be a witness!  You have to advocate for your girl to get treatment.
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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heartbrokenmom
We did see large protruding veins at her lowest point.  Never did find out what they were.

Honestly, though, what is important right now is that she get to a hospital emergency room right away.   That is a scary BMI (as I'm sure you know).  We are in California and I had to get a medical conservatorship from the Superior Court to force medical treatment.  I was told by the hospital if I didn't obtain it, they would ask the court to appoint a public conservator.  However, my d's issues also involved serious depression/anxiety/suicide attempts, which perhaps is not something you are dealing with.  I do think, though, that with a BMI that low most hospitals would 51/50 her into an admission as her BMI is so low.  The hospital explained to me that AN/BN (in severe cases) is a type of suicide attempt.  I think I agree.

At the very least do you have a family doctor you can call and explain the situation to?  You may have to call an ambulance, which may really p/off your daughter.  It is important that your family doctor know why you are sending her in advance of the trip, so that he/she can hopefully insist on a hospital admission.  At the very least your d's potassium levels need to be checked very often.  Yes, I made my daughter extremely mad at times by forcing her to the hospital when she didn't want to go, but now that's she is in recovery she tells me that she is very grateful for my intervention.  You probably already know this, but when someone is seriously underweight and malnourished, the brain cells shrink and they become physically incapable of making sound decisions/judgments about their own health.  Sometimes I had to do what I thought I could live with (does that make sense?), even if it went against my d's wishes.  I knew that should something tragic happen to my d when she was at her sickest, I needed to know that I would feel I had done everything I could to get her help.
Heartbroken Mom
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OneToughMomma
I think you are beyond the point of being able to 'self treat' what ails your d.

In your place  I would phone an ambulance.

xoOTM
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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K63
Hi Newtothis , the fact that your d came to you scared that she was worried about protruding veins is really a cry for help. She is at a dangerously low bmi it may be that she is so thin or may be something else . I would just take her to accident and emergency or G P . She needs urgent care. Sorry that this is so difficult I have a d who is 18 who didn't realise she was so sick and needed IP admission . We are in a better place , they are too starved to realise how sick they are if that makes sense.
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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Doitagain
I'm sorry you are in this horrible position. Much as this pains you I think you should ring mental health services first thing and ask them to come come out as an emergency to section your poor D under the MHA. Please also call the GP and insist that the do this too.,also, look up health watch in your area on Google, talk to them,, tell them that your D needs to be sectioned under the mental health act as she lacks capacity and that nobody you have asked will do this for you. Call PALS and say the GP has not done it. Call everyone and call them tomorrow. Where are you? If UK, please say the area and perhaps we can collectively draw on our resources and try to help. X
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ooKoo
Hi Newtothis,

I am sorry that your D is so poorly. It sounds as though you have been to hell and back already.

My D doesnt have a low BMI but a few weeks ago, I was advised to call her an ambulance by our local CAMHS. The reason for this was because she is not at all compliant with any health service at all, but needed an assessment after a very rapid weight loss. I was told that if I felt that she would not come willingly in my car (with child locks on), then an ambulance would need to be called. If she wouldn't willingly get into the ambulance, then the ambulance crew would call the Police. This is standard procedure. And I was told that my reasons for this were more than justified.

I told my D the plan. I also told her that we had called ahead to A&E (ER) and they were expecting us and if we didnt arrive by a certain time, they were sending an ambulance out to us anyway. Either way, she was going to hospital.

I guess what I am saying is, if I had enough reason to call the emergency services, then you definitely do.

As far as the veins are concerned, I dont have experience with such a low weight/BMI but is your D standing a lot - I know some AN sufferers refuse to sit down - which could mean varicose veins (?) - just guesswork, ignore me if not relevant.

Please keep us updated. 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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Doitagain
I'm so sorry - I don't mean to sound heavy handed and I realise that maybe I did in my earlier post. It's just when I read yours I was immediately worried for you both. I know only too well the cold Icey grip of fear when you are at home with a non compliant and refusing 18 year old. I strongly believe that she wants the help now but the illness won't allow her to get medical help - her coming to you is such a strong sign that underneath it all she is reaching out. I am so sorry for you too - I do know how you must feel right now. And please know that I understand entirely that your D just will not go to any medical professional right now. My D would not go either at that BMI. There came a point where she was even scared , checking her own heartbeat etc and still...no. I get what you are saying and it's frightening which is why I wanted to reach out a bit.

Do you know that as a mother, regardless of her age, you can request that your D be assessed under the mental health act. They will come to you. Depending on where you live, there are also some ED services that will come out in an emergency to you, but you need to persuade a medical professional to request it. Your D must have had some treatment somewhere at some time? You know she will hate you for it at the time, but please know that she will thank you for it later. At some point when she is getting the medical care she needs she will understand that you are saving her life and at some point, hard as it is to believe right now, she will thank you for it . If you are in the UK you could explore that in terms of them referring etc.

It may feel awful going against her but you know that it's a true act of love.
Please just know that there are people here who will do their best to support you .
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new2this
Just thought I'd update on progress and thank you all for replying.

D's veins are still very obvious but having done some research I suspect that's due to a lack of fat covering them, rather than circulatory issues or varicose veins so I'm calmer now. D also says that they are not paining her.

There is no edema or skin discolouration so for the moment alarm bells are off. I think I just overreacted at first because at this weight any little thing scares me, I'm just so afraid if her dropping dead.
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Psycho_Mom
Hi,

I don't understand.

You are rightfully afraid that your d will drop dead at any moment, and yet you are not making any move to get her medical attention?

Is she being monitored by a medical professional?




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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new2this
She is 18 and legally an adult. I am UNABLE to get her medical attention. She is not seeing any medical professionals currently, no.
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deenl
Hi new2this,

Thanks for updating us. I was wondering how you were doing.

My son had a BMI of about 12 too so I understand totally your fears. I used to sneak into his room in the morning to make sure he was still breathing. I understand your daughters resistence to medical care too. It is a symptom of the eating disorder. BUT nobody this ill can overcome an eating disorder without inpatient care. YOU need to start looking at places she can go and at how your legal system works when people are to ill to make sensible decisions regarding their health. (It is called anosognosia; an inability of the brain to comprehend how ill it is)

I can hear you thinking 'Yeah, well your kid was 12!' Let me tell you, my H and I had to drag our kid to hospital, 3 adults had to hold him down kicking, screaming, biting and scratching for 1 HOUR while the crises team traveled to us. This was at a BMI of just under 12 and a weight of 28kgs! None of the adults escaped unscathed. It's a parents almost worst nightmare. Finding them dead in bed is worse and that is one I don't have any more because he is slowly gaining weight and getting treatment and has smiled! OMG so precious to see!

I hope I am not being too overwhelming for you. This is such an enormous emotional chaos, I KNOW. But please realise that your daughter is incapable of saving herself. There is in every country a legal system set up to save people like our kids, to stop them slowly killing themselves, to ignore their TEMPORARY wishes and fears and to get them the medical care they need. Please, please investigate what you need to do to get your daughter back to a life worth living. 

My heart is with you and I am sending you lots of strength.

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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Sotired
She is 18 and legally an adult that's true.but there are safeguards in place for this.the mental health act is in existence for this reason.you can section your d and get her treated against her will.if you are in the states you will have an equivalent law-it may be the 5150 hold.
My d is considered an adult at 17 in NZ.so I sectioned her to get her treatment when I had to.you wouldn't have come here unless you wanted some way to help your d I'm guessing.this is the way you help her.its hard,it's horrible and it hurts.but being legally an adult means you have to find a way around the system.you have to talk to you d about whether she has any life goals beyond anorexia and ask her to help you get her treatment so she can get on with her life.
This is a tough illness with only tough decisions to be made.sectioning our children makes us feel awful-but at a BMI of 12 ,the very real alternative is worse.i feel for you, I truly do.you are probably as scared as I have been this last few weeks.my d has been in hospital.she is now home with a Ng tube and will have one for the foreseeable future.this is her choice.
But when it wasn't her choice I had to section her four times to get her treatment.i did it because she couldn't look after herself.now is your time to look into legal options-medical conservatorship,mha,,whatever will give you the power to get your d treated.her illness will hate you for this,but your real d lost under the illness,will love you for it.
You can do this.have faith in yourself and find a way through.
Sotired42
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Colleen
It's so hard to set aside what our expectations of what someone should and shouldn't be able to do.  You'd expect someone who was that close to death to seek medical treatment.  You'd expect an 18-year-old to be adult enough to make decisions in her best interest.  ED hijacks those expectations.  Your d is not capable of making good decisions around her health right now because she is suffering from a brain disorder.

Legally you probably can't 'force' her to go to the doctor.  But you probably don't live in a courtroom or a police station.  You have the right to rule your own kingdom--your house.  You can require that the people who live in your kingdom obey general rules of conduct--and one of them can be that sick people MUST get medical attention.  It doesn't have to be punitive or angry.  It's just matter-of-fact.  "Look, we can see that you are unwell and we are worried that you might drop dead.  YOU may not be able to see it, but that's okay if you don't.  We can't live with what might happen if you die.  We love you and we would never, ever get over it.  So let's go.  We're heading to the hospital."

(First call the hospital and make sure that they know how to treat EDs.  There are good resources on the FEAST page to take with you.  The last thing you need is for them to dismiss your concerns in front of your d.  It will only reinforce her mistaken belief that there is nothing wrong with her and you are overreacting.)
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Colleen
Let me share a story with you.

My dad hated hospitals and doctors.  He didn't even go into the hospital with my mom when we kids were born, he hated hospitals so much.  Same with doctors.  When he was 62 he developed some worrisome behaviors...getting lost in his own hometown, getting uncharacteristically angry about little things, etc.  Odd stuff you could write off or just laugh about.  But one day, when he couldn't write the letter K, he broke down and cried, "I think there is something wrong with me.  I think I need to see a doctor."  It turned out to be brain cancer and he had a huge tumor in his head.  Surgery, radiation, best treatment available.  Three months later he was dead.

For the next few years, my mom beat herself up.  She felt she should have noticed that he wasn't coming home in a timely manner--she found out later that he'd drive around for hours till something looked familiar.  She felt she should have insisted that he see a doctor when he snapped at her for tiny things.  She should have noticed this, she should have done that, she should have been more observant and she should have insisted.

The truth is:  there is NO WAY that my mom could have known that these little things indicated a possible brain tumor.  It didn't prevent years of grinding guilt and remorse.

The point is--and I've told my own adult d this--I DO KNOW what is going on with her.  It's not a mystery illness when I see her underweight and irrational.  I MUST say something, do something, move heaven and earth, make other choices as impossible as I can NO MATTER HOW SCARED I AM OR HOW ANGRY SHE GETS.  There is no way I can live with the grief and guilt that I would feel if she died.

I had this very conversation with her about 1.5 years ago when she was in the midst of a big setback.  She was 23 years old and living independently.  But she was unable to see that she was slipping, and any mention of it brought back Zool, her ED alter-ego.  It was terrifying to bring up the topic and it brought out a lot of PTSD for me.  But the alternative...unthinkable.

We can't wait for these kids--or adults--to make good decisions about their health.  They are unable to see what is going on and act on their best interests.  We adults are on the outside--we can see what's happening and insist that they get help.

Help still works whether the patient has buy-in or not.

Sorry for such a hard story, but your d sounds seriously ill and I want to empower you to help her.
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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sk8r31
Totally agree that your d needs medical attention asap. Whatever means you can get her to hospital...legal or otherwise, as Colleen mentions, must be your next step.

I'd print out and take the Academy of Eating Disorders pamphlet on medical and risk management with you.  You can find it here.

Sending you strength and support,
sk8r31


It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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MarcellaUK
As others have said, your daughter's BMI is dangerously low and she needs urgent medical care whatever her age. The UK MARSIPAN (Management of the really sick patient with anorexia nervosa) Guidelines would apply in her case and would be useful along with the AED Guidelines if your local A&E and general psychiatric teams aren't up to speed with AN. Here is their risk assessment check list
Fiona Marcella UK
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