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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Roseau
My daughter is 19 and a university student living away from home in the UK. She has a history of depression, anxiety and self-harm and was an in-patient when she was 17. The transition from CAMHS was badlly handled and she was only taken on by adult services after several over-doses.

She is currently under CPA approach and has a general psychiatrist who she sees once every five months and a care co-ordinator whoshe sees fortnightly. 

She has been restricting her food since at least January and has lost a lot of weight. She only eats one meal a day and will only eat "safe foods". She says food is the only thing she can control, that she needs a self-destructive behaviour to focus on and restricting her eating fulfills her role, that all the problems in her life will sort themselves out when she is "thin enough".

I have brought my concerns up twice with her psychiatrist who said she "doesn't look fat" and lots of teenage girls are "obsessed with her weight" and that if she wants to stop losing weight she just needs to eat more. He didn't bother weighing her.

Recent blood tests to check that depression medication was not having any side-effects show low-potassium and low white blood cells compared to last time and they are going to redo a blood test next week. She has had low blood pressure for month and feels faint when she stands up but said she didn't when they asked her. 

Am I justified in feeling concerned? And if so, what can I do to get help for her?
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scaredmom

Hi there Roseau, 
Welcome to the forum!

I am not from the UK and I am sure there will be others here soon to welcome you as well. 
As you have brought up your concerns with the psychiatrist, have you asked for an eating disorder assessment. You say your d is living away, is there a way to get her home with you? I have seen many here bring their children home from school so that they can take care of them and support them. 
Low potassium can be seen with purging and can be very serious to the heart rhythm. Low white blood counts can be non-specific and can be seen with significant weight loss and meds too. May I ask who ordered/is monitoring the labs? I would talk to them and bring up your concerns. With privacy laws and policies they may not tell you what is going on with d, but nothing is stopping you from sharing your concerns in a firm way. 
I wonder if you are able to bring her home to you. I think that would be necessary if you do not feel she is getting the attention/medical care she requires.

I am sorry you needed to find yourself here, but I am glad you are here. We really do wish to support you in anyway we can. 
I think you are very justified in being concerned. Many of us had that gut feeling, mother's intuition if you will, and most were absolutely right. You know your d best, you know when there is something off. I think you are within your rights as a parent to try to get help and proper diagnosis for your d. 

Sending support,

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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scaredmom
With her feeling faint when she stands up, is there a way she would go to a hospital to be checked?She may have low blood pressure and that can be quite serious. 
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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Roseau
Thanks for replying to me.

She does have low blood pressure - this has been checked on a number of occasions but when they ask her if she feels dizzy/faint she says "no".

As to who ordered the blood tests, in the UK it is a bit complicated. The psychiatrist decides what medication she should be on and then the GP prescribes it. So the psychiatrist asked the GP to do a blood test to make sure that the medication wasn't having any side-effects (primarily liver function). The GP phoned her to say the potassium and white blood cells were lower than last time (approx. 3 months ago) and that she needed to do a repeat test to make sure the results were accurate. She hasn't seen the GP for about 6 months.

I very much doubt the GP would agree to talk to me. The psychiatrist will but her next psychiatrist appointment isn't until January. There doesn't seem to be very good communication between the two. She was supposed to have been weighed before she started one of her current medications as it can cause weight gain but the GP didn't. When I told the psychiatrist this, he said my daughter should have asked the GP to weigh her. Given that she doesn't want anyone to weigh her, this didn't seem very helpful.

She is adament that she doesn't want to come home.
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scaredmom
I find when I put things in writing it can become part of the medical legal chart. Even if they won’t speak with you, writing them to let them know that they need to do better is important.
i have written ‘dear doctor letters’ explaining my concerns and I would be very clear
to say that you feel she is an eating disorder  and that you expect them to do due diligence and get her the right assessment, whether they share any information with you or not. I have found here when I put certain bugs in their ears, they have thought twice and ordered tests and assessments I have asked for. 
Writing your evidence for your concerns  in a clear methodical way may help get your point across. I am sorry I am just trying to throw out ideas for you and I am sure you have tried so many things so far. I don’t wish to push and prod you. 
As for d not coming home, are you able to go there to support her? 
I have learned here that if I make it a medicolegal issue it works better for me.
i am so sorry the system is blocking you!
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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sk8r31
Here is a link to the Marsipan report by the Royal College of Physicians in the UK.  Page 14 talks about risk assessment for eating disorders and outlines the various measures of potassium levels, other blood work, and ECG reports.  It would be worthwhile to look at this, and refer to it when speaking with the team about your d.  You can raise your concerns and share information with them, even if they can't share information with you.  It is necessary to be a squeaky wheel to get your d the assessment she needs.
As well, your d's college will have health guidelines to follow, for ensuring that any student is fit to attend classes. Eva Musby has some great information and resources on her website.  She also discusses the recent access to treatment guidelines recently released in the UK.

Sending warm support to you.  Knowledge is power; it's a steep learning curve when you're dealing with an ED, but there are some great resources to tap into above.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Roseau
I go and see her at least once a month - and she is thinner every time I see her, and also eating less.

I was quite clear with the psychiatrist and said she had a disordered eating pattern, was eating only one meal a day and only safe foods and saying food was the only thing she could control. The psychiatrist dismissed it saying she wasn't anorexic because she wasn't "stick thin". I pointed out that I hadn't said she was anorexic but that I thought her behaviour around food was concerning. He asked her how much she weighed and took her word for it.

I thought that maybe restricting her food was less dangerous than her other forms of self-harm but the blood test results have worried me.
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sk8r31
One does not have to be 'stick thin' to have an eating disorder.  It's a very harmful myth.  My d was never below an average weight range for height, but had lost weight rapidly over a few months, and needed hospitalization to become medically stable.  Unfortunately, things can go south very quickly with continued weight loss and other concerning behaviours, and you are right to take this very seriously.

Arm yourself with some facts and medical guidelines regarding EDs, and head off to see your girl.  She needs you to advocate for her, as she likely cannot do so for herself.  Anosognosia is an ED trait...not able to realize how sick one is.  Medical leave from college may be necessary.

Hang in there.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Roseau
Thanks for the links but she's 19 so just that little bit too old for the information on Eva Musby's website concerning accessing treatment.
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Foodsupport_AUS
Welcome to the forum. It does sound like you are very right to be concerned. Unfortunately your D's psychiatrist does seem to be ignoring the fact that your D is losing weight and there is collusion with your D in assuming that all she says is correct. Eating  disorders thrive on secrecy and it is normal for those suffering to deny that they are ill or having symptoms - a condition called anosognosia. 

It sounds like when your D is going to the GP for blood pressure and bloods that they are not doing a full assessment. One of the important testing criteria is doing postural blood pressure and pulse. They should lay down for five minutes then do blood pressure and pulse, then repeat these after standing for one minute. A significant rise in pulse or fall in blood pressure is evidence of compromise even if "they don't feel dizzy". It also sounds as though your D should be having ECG's done to check for cardiac risk. 
People can be life threateningly compromised with eating disorders and still be of "normal weight". 

You may like to go to an Australian site - Feed Your Instinct  and do the questionnaire. You are able to forward on any information to the GP or psychiatrist even though they may not share with you without your D's consent. This site in the print out summary for GP's, reminds them of what to look for in eating disorders. That along with the Marsipan guidelines will hopefully help your D's GP to acknowledge concerns. Are you going along to visits with her? 

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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blondie
Do you think she would consider going to her university's counselling & wellbeing service? They might be able to offer help

Also, where is she registered in terms of GP practices? Is it one at home near you or one at university? If she's still registered with one at home, you might want to consider getting her to register to one wherever she is at uni and that might open up better/different services to her
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blondie
Another thought, you could contact the head of her course/course tutor and let them know of your concerns - having another pair of eyes on her whilst she's there might help - if only to reassure you

Do you think she would be willing to defer for a year and take the rest of this academic year to focus on recovery or,,,?
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teecee
Gosh your GP and Psychiatrist appear to be close to no use which is dangerous when ED is suspected. Our GP was lovely but also honest about her knowledge around EDs so I had to educate her (which she was willing to allow thankfully). The blood tests GPs do generally miss out a lot of key tests...I know this because my doctor questioned why CAMHS were requesting certain tests and was curious as she didn’t think they were needed but went ahead and did them anyway. 
Writing concerns down in a letter is an absolute must to get action. 
In terms of uni...do you have leverage there? Are you supporting her financially to be there? If so sitting down with her and developing a contract in terms of what your support looks like if she practices self care and actually what you expect from her...ie feeding herself, attending GP appointments...getting you signed up at the GP so they will talk to you about her. My husband did this you just need their consent (as part of the ‘contract’). You have to be willing to give a timescale to see a turn around or explain how support will be managed differently. 

My D is financially independent from us however I have informed her that I will contact university to raise a safeguarding concern if necessary which may prevent her from continuing with her course (when she goes).

Independence is very valuable to her and this is an ongoing understanding. At present she is managing to practice good self care. 
6months ago she would not have been able to do this due to her illness. It’s like reteaching a toddler how to cope. It very much sounds like your D is struggling with this. 

I often reframed by asking myself “if this were cancer would I allow her to stop taking her medicine (food) and go it alone?” 
This gave me the courage to step in. Age is just a number...they can still be very vulnerable at any age...toddler like remember!
please ask away some of us have been here/going through so will help wherever possible. Xxx
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Roseau
She is registered with the university GP because she needed a GP to oversee her existing mental health problems (depression, anxiety self-harm). I think part of the problem stems from the fact that she is already under secondary mental health services for her other problems.

I went with her to uni well-being services when she first enrolled at uni and they said they could help her with DSA and liase with her tutors but wouldn't provide any other help because she was already under secondary mental health services. I suppose I could tell them I'm concerned about her eating but I'm almost certain they would tell me to talk to her psychiatrist.

Having looked on her local trust website, it doesn't seem that the GP can refer her directly to an ED service because she is already seeing a psychiatrist, and that the referral would have to come from the psychiatrist who doesn't think it is a problem... Although I don't know that the GP would be much better. She is supposedly registered with the mental health specialist at the GP surgery but he told my daughter that if she had more positive thoughts she wouldn't be depressed (my daughter was an in-patient with depression when she was 17 so it is not just teenage angst).

The disordered eating is secondary to her existing problems and I know what triggered it but it's not something I can change and I don't want to put details on a public forum. Part of the difficulty for me is managing her restricted eating alongside everything else. Her self-harm has been/can be life-threatening but is also a maladaptive coping mechanism and all the specialists involved in her care have emphasised that it would be dangerous to try and prevent her self-harming completely but I need to get her to do it in the least dangerous way possible. Restricted eating did initially seem to me preferable to some of the other things she has done to herself.

I am paying for her to see a private therapist as she is still working her way up to the top of the ten month (!) waiting list for NHS therapy and I'm hoping that therapy will eventually reduce her "need" to self-harm. I looked last night at the trust's pathway for Eating Disorder referrals and there is a four week wait for an assessment and then a four month wait for treatment to start unless she has a BMI of under 16.5, which is not the case. So even if she does get referred it is not going to change anything for months.

I suppose what I really want is for someone to monitor her physical health properly so that action can be taken if she is becoming seriously unwell. As someone said above, a postural blood-pressure test would be helpful since she has told me she is not only dizzy but "sees black" when she stands up. She fainted after the last blood test (not uncommon I know) but she told them she'd eaten and so they just let her go. On her way home she vomited and ended up sitting on the pavement for a while because she felt so faint. I would also like someone to weigh her.

She is due to have an ECG because of the medication she's on (she is supposed to have one every six months).
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Foodsupport_AUS
It sounds like you are doing some great research. Your D's low potassium is a red flag for purging as well as her restrictive eating. If this was happening as well as regular bloods, BP and pulse she should be having even weekly ECG's. Purging is a particularly dangerous behaviour in terms of cardiovascular risk which can occur at any weight. Even though there are those time lines for the start of care if she is an outpatient if there is anything urgent she can always be assessed in the emergency department. 
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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Roseau
Is it purging or just vomiting that can lead to low potassium? Over the past six months, she has had a number of episodes of violent vomiting lasting for about a day when she can't even keep water down. I managed to convince her to see a GP after it had happened a couple of times. She saw the duty GP who gave her some anti-acid pills. It has happened again since but she hasn't been back to the GP. 
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scaredmom

Here is a resource:

https://www.aafp.org/afp/2004/0315/p1530.html

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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Roseau
Thanks.  (Although, I don't think she does purge - the vomiting episodes were not self-induced).
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scaredmom

I think right now your d requires a proper medical assessment top to toe. 
I am sorry that there is no easy answer on how to get her assessed. I would push for an emergency room visit with the facts: feeling faint, not eating much, low potassium. Is there a way she would agree to going to the hospital at all?

 

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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teecee
My D purged calories with exercising rather than vomiting  but I have learned from other parents of purging kids that they can do it efficiently and effectively using muscles - some are so adept at it they can regurgitate food in this way and silently.

we monitored our D rather than relying on professionals to do it. We bought a cheap BP monitor and utilised scales. My D was not ‘stick thin’ but she was dangerously ill. 
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Kali

Hi Roseau,

Are you able to accompany your daughter to the medical appointment she has, where you mentioned they are going to redo the blood test? Of concern also, in addition to the low potassium, is the low white blood cell count. Can you speak with the doctor about how to adjust your daughter's diet and what she will need to do to reverse the deficiencies? If she is not able to do it on her own you may want to step in and help or have her take a medical leave from school and come home where you can help her while she works on improving her health.

Here is some info about low white blood counts. We cannot give medical advice here but you can ask the dr. about it. 

By Dr. Jennifer Gaudiani:

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However, there is an important blood test to watch out for that may be abnormal even in those who purely restrict, most typically in anorexia nervosa or individuals who have experienced significant rapid weight loss – the white blood cell count.

There are three main cell types in our blood: the white blood cells (infection fighters), the red blood cells (oxygen and carbon dioxide carriers), and the platelets (the cells that help stop bleeding). These cells are all produced in the inside of your bones – the bone marrow. In severe underweight or rapid weight loss, the cellular bone marrow is replaced by a dysfunctional “goo” that does not produce cells normally. Essentially, faced with limited caloric resources, the body cannot sustain normal bone marrow function. As a result, one of the red flags to watch out for in standard blood tests is a low white blood cell count. A low white blood cell count may not be dangerous in-and-of itself, but it’s a serious sign of nutritional deficiency. If you have bone marrow failure of starvation, you are NOT fine. 

Don’t allow anyone to shrug off a low blood count of any type – white, red or platelet. It’s serious and can mean that the current nutritional state is putting severe and harmful strain on your body. The good news? All cell lines will recover with sustained nutritional rehabilitation and weight restoration. 

http://www.gaudianiclinic.com/gaudiani-clinic-blog/2015/11/30/anorexia-and-rapid-weight-loss-can-cause-bone-marrow-failure

and here is some info about low potassium and which foods are rich in potassium.

https://www.medicinenet.com/low_potassium_hypokalemia/article.htm#which_foods_are_rich_in_potassium

Unfortunately many people who purge are ashamed and not able to be truthful about it. So you may think that she is not purging but there is always the possibility that she is. The low potassium levels are a measurement and would indicate a problem. Let me ask whether the vomiting episodes have been accompanied by a headache in her case, and if so, has she been screened for migraines? Vomiting can be a symptom of migraines. That is also a possibility.

warmly, 
Kali

 

Food=Love
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Roseau
I am going to go with her to the next blood test but she will only see a nurse, not a GP.
I know she has purged occasionally but I don't think she does it regularly - she does tell me most things and I am inclined to trust her.
The vomiting episodes were not purging. She thought the first one might have been a hang-over but that has put her off drinking so alcohol was not the cause of the subsequent episodes (and in hind-sight probably wasn't the cause of the 1st either). I did wonder if it was a long-term after effect of paracetamol overdoses but I haven't found anything on line which suggests that happens. It isn't accompanied by headaches but she does feel feverish when it happens and very weak (unable to get out of bed). I tried to get her to go to A&E when it was actually happening but all she eventually did was go and see a GP a few days later.
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Foodsupport_AUS
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I know she has purged occasionally but I don't think she does it regularly - she does tell me most things and I am inclined to trust her.


I think we have all felt this way about our children, particularly at the start of this illness. My daughter was also incredibly honest, however that did not stop her ED from getting her to do a lot of things that were deceitful. If your D purges on occasion she probably purges more than occasionally, she may also be exaggerating how much she is eating and not discussing other things she is doing. In part she may do this out of shame, even though you will not judge her. Her eating disorder will also drive her to hide the behaviours which may force a change. 
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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tina72
Hi from another mum of a 19 year old 🙂.
I am just back from holiday and had no time to read your thread in total but I have a question: what financial power do you have? Are you paying for university? So you can set rules for that. We have a contract with our d that we stop paying for the next semester when she loses weight and does not eat enough.
Keep feeding. There is light at the end of the tunnel.
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Roseau
Hi Tina,
I have no financial power over her. In the UK she gets a loan which covers fees and maintenance.

I have another question. She didn't see a GP when I went with her for the blood test just the person who took the blood. The GP has just phoned her to say she has prescribed iron tablets. My daughter's reaction is why would she take them since she is trying to damage her body. The GP didn't ask her if she was eating properly and she still hasn't been weighed.
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