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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linefine
Hi, I'm new here.  We have a 17 year old daughter who is suffering from depression and has started to eat less over the last few months.  She has always been of slim build, and didn't start periods properly until age 16, but they have been very erratic.  There is a definite corollation between her weight and her periods.  She has a BMI of 16 at present.  The eating has only become a problem in the last few months and it took us a while to notice it (as I guess it does for most people).  She had some CBT for the depression but it didn't help her, and her therapist said eventually that she didn't think she could do any more unless DD was willing to implement some changes.  At the time we hadn't worked out that the eating was becoming a problem.
DD knows she's skinny and doesn't have a problem with the idea of weight gain - in fact, she wishes she was more curvy like her friends at college.  A few weeks ago she began making a real effort to eat more, and, surprise surprise, had a period last week.  Now something has happened at college which has upset her and she is back to refusing to eat. Her reason for not eating is having zero appetite rather than not wanting to put on weight.
She also has Selective Eating Disorder (my diagnosis) - I am certain of this as I have it too, and she has been difficult to feed (as was I!) from birth.  Therefore her range of acceptable foods is very limited, and now getting smaller.  Don't know how much is known about SED but it's to do with taste, texture, how a food "sits" in the gut - generally referred to as being a "fusspot" by those who don't understand!  My DD has a big thing about texture, and can't eat anything she considers to be "slimy".  She has always been like this but has eaten well and healthily all her life up to this point, nontheless.
We moved house and area a year ago, and it was all very stressful.  DD was home-educated for 3 years before we moved and continued with HE until she started college in September this year.  She is really enjoying college which is good as she was quite isolated before that after we'd moved.  (Aside - home education doesn't isolate of itself; it was the stress of moving etc which caused the depression which in turn caused the isolation.  She had an extremely full social life before we moved!)
We have been to the GP who ordered bloods and a pelvic scan.  The scan showed normal sized everything but a suggestion of PCOS on one side. We are due to go back, hopefully this week, to hear what the GP has to say about all the results.  DD is very resistant to being referred to an eating disorder specialist - I have only mentioned it once and got a very angry response!
I am suffering from clinical depression and general anxiety disorder myself, although with medication and various self-help measures I am coping extremely well now and mostly able to function normally.
Any pointers as to what we can do at the beginning of this journey would be very welcome.

Heather

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always PROTECTS, always TRUSTS, always HOPES, always PERSEVERES. Love never fails.
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sk8r31
Welcome linefine, though sorry you have a need to be here.  There is a wealth of knowledge on the FEAST main site, as well as the experience of many parents on ATDT, and hopefully you will find much of benefit.

Medical monitoring is very important, not only for blood work, but for other markers of ED illness, such as orthostatic blood pressure, pulse rate etc.  Many GPs don't know the full range of testing that should be done, and it would be wise to gather up as much info as you can prior to any appointments.

Here is the Academy of Eating Disorders pdf booklet on medical risk management, and the kinds of tests that should be carried out for medical monitoring.

Regardless of what you want to call your d's ED, the most important piece is Food = Medicine.  Your d needs nutritional rehabilitation to put her back on her historic growth curve, whatever that may be.  You have already seen the result of cutting back on necessary food, with the loss of menstrual cycle.

You will need to challenge the limited number of 'acceptable' foods.  The anxiety that your d will feel will not subside until sometime after weight restoration.  Some parents, myself included, have a d with anxiety issues that preceded the ED.  In my d's case, meds were necessary for a while to combat the extreme anxiety involved with refeeding. 

You mention that your d is enjoying college, and it is helping with isolation issues.  Perhaps you can use the incentive of continuing at college with eating what is required to return her to health.  For my d, being able to attend a university outside our state was a huge motivation, that enabled her to push through the distress of weight restoration.   For our d, we insisted on a full year at WR, before she could leave, and had a strong safety net in place, particularly for the first year.

It is extremely challenging to be away at university/college while battling an ED.  Health is the most important thing at present, and taking a semester away to work on becoming weight restored can be a very wise thing.  School can wait; good health can't.

Sending strength and support as you work out the best way forward for your d and your family.

Warmly,
sk8r31


It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Sotired
Hi lifefine,
Welcome to the forum,though sorry that you had to find us.
When you took your d to the doctor did they do an orthostatic heart rate?this is when they take the pulse lying down and then again standing up.its pretty important as it can give you a really clear indicator of how hard the heart is having to work.a BMI of 16 is extremely low.picky eater or not,it's still very low.the whole starting to eat and then suddenly stopping again because of some imagined or real slight is all too common with this.they eat long enough to allay your concerns and then stop again as soon as you stop worrying.
Now I don't want to worry you further,but you have only one year to get anything done under child law.after your d is 18 your rights to help your d are severely curtailed.if you were in NZ,they already would be.so now is not the time to spend six months worrying.now is the time to get your d to the ed specialist,get a programme of eating underway and worry about everything else later.expect to get a lot of anger and upset from your d-eating disorders hate to be 'found out' and certainly hate treatment.start her on three meals and three snacks everyday,calorie dense food.tour d can be depressed,but she still has to eat.because the less she eats,the less she feels like eating and even if it doesn't start as an eating disorder it can morph into one all too easily.so eating is key.
At least you have your own meds already sorted,I wish I had at the start of the journey!others will chime in soon,but an orthostatic heart rate at your next docs appointment is essential and if hospital is the next step then do it.you only have a year before her treatment is in her hands so hit it with everything you have now.
Kind thoughts your way,keep us posted on your journey,
Sotired42
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linefine
Hi, and thank you for replying!  It's actually been a horrible day, and hubby & I have not gone to a Christmas dance we've been looking forward to for months, as D is so depressed and I'm too anxious to go out and leave her on her own :-(  As I've been so unwell myself for a while, I'm feeling really angry that I'm missing the dance, and thinking we might have to miss the carol service tomorrow as well.  Christmas is very important to us in this family, and especially to our D, who gets very upset if any of our normal "traditions" aren't kept, so it's especially hard when she's feeling so low that she's not bothered about any of it herself.

I know she's ill, and I do understand a lot of what she's feeling (I lost 8lb myself when really depressed through having such a small appetite) but does she have to be unkind with it??  I've been through depression hell, goodness knows, but I wasn't unkind.....

Sorry to rant - most of the time when I think about D's illness I'm anxious and feeling desperate for her.  It's just today when I'm so disappointed about the dance that I'm feeling so angry!  The last few months with my depression have been the most horrible of my life and now I'm eventually feeling better, and D seemed to be doing well, it's just a hard knock to take.... I'm normally very assertive when it comes to medical issues - we have quite a lot of other medical things in our family, and doctors & hospitals are common places for us to be - but I'm feeling that I don't know how I can cope with this.

Any pointers for good places/doctors to seek the right treatment in the UK?  We're near London so can get to most London hospitals easily.
Heather

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always PROTECTS, always TRUSTS, always HOPES, always PERSEVERES. Love never fails.
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Elena
Dear Linefine,

I'm no expert, just another mum whose d has an ED. Our story is a little like yours, in that it took us a while to see through all the depression and anxiety to see the ED lurking behind it all. I actually had not heard about Selective Eating Disorder before reading your post, so I can't offer you any advice in regards to that in particular. 

The one thing that really stood out to me in your post was how resistant your d is to the suggestion of seeing an ED specialist.  This is typical ED behaviour, and for me puts up a big red flag. What your d most needs is to see the ED specialist.

It is hard, but we try not to get caught up too much in worrying about exactly what ED our kids have, as EDs tend to morph from one to another, and what they are diagnosed as can change over time. My d was initially diagnosed with EDNOS and then later with AN, the problem was that I didn't take EDNOS so seriously, and I ignored advice in books and on the forum, because I thought it wasn't relevant to me, as we only had EDNOS not AN. 

The thing to remember is that all EDs are serious and potentially life threatening. They need to be taken very seriously. The very best advice I was given here on the forum at the beginning of our journey was to hit the ED as hard as I could as soon as I could. Don't be afraid of over reacting, Eds are dreadful things and need correct and quite intensive treatment.

The best evidence-based treatment for EDs is FBT (family based treatment/therapy) sometimes referred to as Maudsley (there may be some differences, but basically they are the same thing) If you only read one book about EDs read Lock and Le Grange's "Help your Teenager Beat an Eating Disorder" there are many other helpful books out there, but this one is pretty much the manual. 

I hope I haven't totally over whelmed you. Many of the mums here if they didn't start out with mental health issues, have certainly developed high anxiety around EDs. It is not an easy road and you will need all the support you can get. So try to be very aware of your own mental and physical health needs too, it is possible that you may need to have your meds adjusted, and to call in family and friends for help at times.

There is help out there. FBT has been working for us. My d is heaps better 6 months into treatment and I can almost see the light at the end of the tunnel. Each teenager's journey is different, but I wish you all the very best.
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Torie
linefine wrote:
...I know she's ill, and I do understand a lot of what she's feeling (I lost 8lb myself when really depressed through having such a small appetite) but does she have to be unkind with it??  ....


We're not doctors here so of course we can't diagnose, but if your d has an eating disorder, then yes, she does need to be so nasty. That's one of the symptoms. 

As you said, she needs to eat more so that she gains weight. The louder she protests, the clearer it is that she needs more weight. 

Take care.

xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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sk8r31
I think another really important thing to keep in mind is that your d really doesn't have much control over her emotions/interactions at this stage of the illness.

If you can try to separate your d from the ED, that is a big step forward.  In other words, trying as best you can not to feel upset at the things your d is saying/doing...it is the ED talking.  Easier said than done, absolutely...

As frustrating as it is to have your holiday traditions and expectations foiled by the ED, try to wrap your mind around the fact that this will not last forever, and that you are doing hero parenting that will help your d to move towards health.

In 'the bad old days', it felt like the upset and agony that our family was going through would never end.  But it did....and now life is pretty darn good overall.

Is there some way that you & h could go out on your own to enjoy some holiday festivities?  Someone trustworthy that could stay for d for a couple of hours?  You could both probably use a breather from the stress of caring for d.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Sotired
It takes a while to get used t o the new normal.during that time,where you learn just how much not just your child but you as well will have a curtailed life, it's pretty normal to feel anger ,which often masks our own anxiety about everything that is going on.your d can't help the way she is feeling,doesn't make it easier I know,but it's her illness, not her.
I often found myself muttering the serenity prayer (which isn't just for AA it turns out,but also a damn fine prayer in ed world) as once again ed mucked up our lives and those of our other children.but then you just have to get on with the day.get another meal in,sort out other kids,another snack in,sort out some housework,another meal in...and so on and so forth.we have celebrated many special occasions in hospital or residential treatment.you do what has to be done and award yourself three gold stars every time.
In terms of what help is available in London,I'm in NZ so I'm not sure, but you can look it up on line.there are feasties that are in England who will come on to guide you I'm sure.
I think the priory is your treatment place or the maudsley hospital but like I said the English feasties can help you there better than I.
Remember to breathe,
Sotired42
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Trytrytry
I have heard many sufferers the trigger isn't the desire to lose weight that started it. They were slim or normal weight and had something happen to cause weight loss - a gastro virus, getting wisdom teeth out, and lack of appetite from depression is a blurry line but they lose a little weight and suddenly brain chemistry changes and along comes ed. so even if your d had no ed before, she was slim to begin with, lost some weight and now the combo of depression and anxiety are a perfect mixture.

That's a very simplistic description and I don't know your d but the best thing u can do is if you have caught it early is feed. You don't need a dr to do that. Do you need to be able to force her to eat, make high calorie food that is small in volume. if she is becoming nasty around and refusing it, and you who know your d thinks there is a problem, there probably is. The fight to go to the dr - whether or not it is one you wish to spend energy on, is up to you but ultimately she will need to gain weight and hope you can withstand her onslaught of nasty, ed abuse.

Sorry, I hope everyone here is wrong but she needs to gain weight for continued monthly periods.
And you financially support her I am guessing, there is list of leverage you have but it is hard when she is so depressed she doesn't care about anything although putting your foot down saying no college until you weigh X may be an incentive.
I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
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Psycho_Mom
Hi,
Welcome to the forum. So sorry you've had to find us, but glad you have.

Like your d, mine never liked anything "slimy", like jams or squishy veggies or many fruits (for a long time when little her favorite "fruit" was onion--she'd just eat them like apple!) She seemed to grow out of most of it in time, with repeat exposure to the foods. She was always of very slim muscular build, athough before age 8 she was more muscular than slim. BUT after she was diagnosed with anorexia at age 15 I went back and looked at her growth charts and found that she was on one trajectory up to age 9, and another, lower one after that. In other words, although her growth chart rose in a normal arc, the WHOLE THING after age 9 was too low. In other words, she hadn't weighed enough for her optimum health since age 9.

I'd like to suggest that the same thing may be true of your d. She may have been underweight her whole life. This would explain the very late menstruation.

It doens't really matter that much now; you know she needs to gain weight and that's the important thing now. But please keep this thought in mind when you are figuring out how much to have her gain--for her optimum health and best chance of getting rid of this illness, is it probably MUCH MORE than you think.

Now, to the HOW of getting her to eat more. Here is what we said to our d, a teen with anorexia who was afraid of eating and also heartily resistant to having her parents "run her life".

"You have a terrible illness that at the moment is preventing you from being able to make good decisions about your health. Therefore we (h and I) will TEMPORARILY be taking over all health decision for you. This includes what, how much and when you eat, how much exercise you do, and going to medical appointments and counseling. We will make these decisions and you will need to follow them, and they will help you feel better. When you are better, you can once again make decisions for yourself."

And then, you see, you serve high-cal meals and snacks (there are ways to make super caloric meals less anxiety-provoking) and respectfully but firmly require that she eat them. Which is of course easier said than done, but you can serach on this site for lots of info on how to do it. See the Magic Plate page first.

Also, I suffer from moderate depression. Dealing with a child with this illness really, really REALLY exacerbated it. Whew. I'd say, plan for a tough year ahead, and do whatever you can now to just simply cut yourself and everyone else in your family as much slack as possible. Ask for help from anyone you can (a church congregation could make some meals, friends could take the other kids more often, someone could call you daily to just talk, or take you on a short walk--that can help depression a lot). Cut back on work, cut back on expenses. In other words, simplify your life as much as you can, because you are all going to need all your resources directed at restoring your d's health while not losing your own.

It's possible!! See my tag line--my d is doing awesomely. And I and my h are recovering!!

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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Doitagain
Hi there, sounds horribly like my D - very slender to start with and became very ill indeed at a BMI of 16.5 (ish) , maybe 17. In practical terms ... Be warned .. 17 is a very tricky age in the UK, so I'd push through on the doctor ASAP . What you do and where you go depends somewhat on where you live in London. Rhodes Farm in North London is IP only but has a good reputation. The Priory Roehampton is IP, OutPatient and Daypatient. Private but specialist Eating Disorder teams and can be NHS IP if needed, again depending on where you live. Vinvent Square in London is NHS, outpatient from age 16. IP from age 18 , but will refer 17 year olds to other inpatient facilities wherever there is a bed , in a crises. You need a GP referral. I understand there is St Anne's in North London which is NHS. The Maidesley in South London are good, NHS, you need a GP referral and again, it depends on where you live. If you could give us an idea of the area you live in I am sure somebody wise will come along and advise. It sounds to me that you are already starting to get on top of this which is good. My advice is to do not, under any circumstances, ignore your own instincts as invariably mothers instincts are spot on on this.xxx
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linefine
Thanks for all the replies - very helpful and supportive!

We live in Essex, but only just over the border so are on the borders of Essex, London and Hertfordshire.  I don't drive, but we have excellent public transport into London, so that would be the best option as D & I need to go to appointments without a car, and public transport into the rest of Essex and Hertfordshire isn't good at all!

We have private medical insurance, but not sure if they'll cover an ED.  If they do, we can probably be referred wherever we want.  In reading lots of posts on here, I think we need to be firm not just on food, but on other things linked to the depression - not coming out of her room, not getting dressed, not going out.  She gets dressed etc on a college day, and when meeting friends, but it all takes AGES as she has to spend 2 hours getting ready with exactly the right make up, hair etc.  But on weekends and non-college days when she has nothing planned out of home, she reverts to her room and phone, and depression is more likely to be very apparent.  We have tried to steer a middle line, as we want to keep communication open, but I think now that's probably not the right way to go.

We have discovered that 17 is tricky in the Uk! D went for CBT and the therapist told us she wasn't allowed to tell us anything of what D shared without her express permisiion unless she was actually concerned about her welfare.  D didn't give her permission, so we have absolutely no idea what was discussed over 12 sessions, except that D said it didn't help, and the therapist said she couldn't help D any more without a willingness to change.  It's the first time EVER in my children's lives when we have been excluded from their medical treatment.

Anyway, I have taken on board what everyone has said, and will book a GP appointment first thing tomorrow - luckily (and unusually!) we have a GP practice where we can usually get an appointment the same day.

Any more recommendations of where to go or who to see would be very welcome.  As time is short, I don't want to waste time seeing useless practitioners.  We had enough trouble and time wasting getting the CBT!  Unfortunately we saw a completely useless (private) psychiatrist a couple of times which has put D right off being "taken to see someone".  Heigh ho, cheerful times ahead!
Heather

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always PROTECTS, always TRUSTS, always HOPES, always PERSEVERES. Love never fails.
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deenl
Hi linefine,

I too am very new at this but lots of things in your story sounded sadly very familiar. My son was severely depressed in June/July. It was only last month that the 'system' formally diagnosed an eating disorder. I (and his pediatrician) am now convinced that his depression was a secondary physiological effect of lack of food and nutrients. For too long it disguised the eating disorder.

We are now focused on a three speared approach at home; 1. lots of love, understanding and support (not always easy when the ED is challenged we have vicious words, spit, violence etc thrown at us. Only our knowledge that our real kid is none of those things keeps us loving) 2. Food, food and more food 3. Hobbies, family outings, occupation, dvd's etc to keep him with us. He does still have a few hours in his room but we try to keep a balance (again we get grief for pressurising him). We use our family's idea of 'normal' as our baseline and do everything to get him to keep to it.

We do have a absolutely necessary medical safety net as my son has very serious consequences from eating so little. By the way, our GP, told him and us in July that he was fine - so obviously bull that it beggars belief. GO WITH YOUR INSTINCT. Find the help you need and NEVER GIVE UP.

So much hoping the right supports enter your life as you need them. You are doing great, keep it up. 

Best wishes,
DeeNL
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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deenl
PS Can you imagine that in the Netherlands when my son reached 13, I needed permission from him to see his files. In his distraught state he of course refused. Words cannot express my rage and frustration!
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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linefine
Well, we started yesterday with explaining to D how ill she is and what we were going to do about it. As expected, she didn't like it, and there were a few shouts (from her, not us), followed late by her suddenly saying she was going for a walk and disappearing before we knew where we were. 20 minutes of complete panic as her mental state wasn't especially stable, then found her and brought her back home - big relief! She has gone to stay with a friend quite a long way away but only on the agreement from the friend's mother to monitor all her meals. She comes back tomorrow. A new and disturbing element has crept in, though. Our son of 19 has Aspergers and now lives on his own out of home (and is doing very well) . We emailed him last night to let him know the situation and to ask him not to put any spanners in the works. He has replied to say we cannot do this and it's illegal to do it, as D is 17, and what's more, he is going to make sure she knows it. He may already have texted, rung or emailed her. I am going to speak to the doc today but now we are having to consider saying our son cannot come home for Christmas. This will be horrible and devastating for us all, including D, S and my 83 year old mother, and will seriously strain our relationship with our son. Because of the Aspergers, he doesn't really "do" compassion or empathy, and his brain works in a very logical, fact based way, and he's very hot on no being controlled, legal rights etc. We didn't expect him to agree, but it didn't occur to us that he would actively try to stop us helping D - although in his mind that's not what he's doing. We can try to explain the disease to him, but he will probably say that we're not health professionals and the Internet can give all sorts of wrong information. Anyone got any wise words??? What legal problems have any of you come up against with a 17 year old in the UK?
Heather

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always PROTECTS, always TRUSTS, always HOPES, always PERSEVERES. Love never fails.
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deenl
Hi, 

I have no experience in this but I do have a gifted kid who argues legal rights etc at me. My response is to focus on love and family. Legal age does not stop love, caring, parenting etc. Do you still help your son out with things, even though he is over 17? Maybe if you explain that it is the same sort of thing - just giving the kid (even though 'adult' age) the love and support they need.

It is a spanner in the works for sure but parents choose to be stronger that any obstacle put in their path. Keep plugging away.

Very best wishes,
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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linefine
Hi deenl and thanks for your reply and the support.  Unfortunately, Aspergers people have brains which are hard-wired differently so explaining things in the "normal" way doesn't work.  He sees us as trying to take away D's legal right to choice etc, and although he understands and accepts that our motives are right, he "knows" that our actions are wrong, especially as we're not medics.  We're going to try and talk to him today and explain that if we don't do this there's a high chance she could end up being sectioned and force fed.  I suspect however that he'll say that would be her choice and we have no right to stop her making that choice.
Heather

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always PROTECTS, always TRUSTS, always HOPES, always PERSEVERES. Love never fails.
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Sotired
Our aspie boy is now 8 but sadly we have had to explain a lot to him about anorexia and what it has done to his sister.why she has to go to hospital,why she had to live away from home.each step was explained to him. I wonder if that approach might work with your son.saying'first we tried this.the second thing we tried was this.the third thing we tried was this.now we have to try this because if we don't your sister will die and we aren't actually allowed to just let her die.its against the law.when she does this then it's the law that we have to step in and do- because if we don't she will be made a ward of the court to have her get treatment.in the real world,sometimes the law is different because it has to be.your sister is so sick she can't think logically and it isn't safe for her to be in charge of her own life now.so it's either us or the courts but she will not just be allowed to die.that is not her choice to make.'
Aspies don't see things the way we do,but they do seem to listen when we explain in a way they get.does your son have an aspie therapist he sees?this could be someone who could help him see why sometimes people have to get treatment even when they don't want it.
Anyway,I hope this helps,but I understand if it doesn't.every aspie is different.
Sotired42
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Lood77
Hi, just emailed you. x
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linefine
Just spoken to the GP and taking D to see him tomorrow.  Explained what we were doing and he was very nice but said forcing food down her wasn't going to work and the underlying issues need to be sorted out.  I replied that I had read up and it seems the Maudsley approach is the best, which is what we're trying to do.  Also said my understanding is that the brain isn't working correctly with the ED so trying to correct that is unlikely to work until there are enough calories to start brain changes.  He said hmm, yes, ok, but it's a fine line.  So he will see her on her own and "assess her mental state". Told him he won't be able to do that properly because she'll seem perfectly fine and will not give him the whole picture.  He said that was useful and he was glad I'd told him all that but he's very experienced.

I need some ammunition, preferably Uk based stuff that I can point to!  I think he's going to say that she isn't too bad as her BMI is 16 and her weight seems to be "stable" (43kg, or 95 pounds, measuring 1.62m height).  As she's 17 she has to consent to treatment and she probably won't.

Oh nuts - it's Christmas, and I so want to get things ready, for all of us, but especially for D, who loves Christmas but isn't enjoying the run up to this one.  I just know her mental state (and therefore her eating and everything else) will deteriorate if Christmas is too disappointing, but all I'm doing is trawling through the internet trying desperately to find help for a daughter who doesn't want it, a son who thinks he's helping but is actively doing harm, and a doctor who thinks he knows what's best but may well make things harder!
Heather

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always PROTECTS, always TRUSTS, always HOPES, always PERSEVERES. Love never fails.
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seekingsunshine
Dear linefine
My D is just 13, but I hear some similarities that I wanted to share. By the way, my heart and thoughts go out to you. It is a crummy hand to be dealt, but as someone (sotired? Elena?) mentioned, if you can wrap your head around this being a new normal for now, it will help you immensely. In our case, same-- thin and athletic, her weight never alarmed the pediatricians, but as moms we can usually tell when things cross over into danger zone. That's why when you said she is technically stable that rang familiar w me, since our D never had to be hospitalized. But a few more pounds and she would have. That can happen fast I hear.

My own non professional advice would be to prep food for her as high calorie as possible, and if the texture is an issue, feed whatever she will eat, ( add on calories). You will quickly see if she resists the calories, ED makes itself known . Our D said she wanted to gain, but "muscle" not fat. We naively thought this meant she was willing to put on weight! No, she wanted only muscle. Impossible to add muscle in a healthy way to an underweight girl who hasn't even started her period, and refuses to eat enough fats.

Once our D saw we were insisting on shakes and butter foods, wow, it got so hard. The tears, the playing with food, and eventually the yelling. She also went through some mild depression and suffers anxiety/perfectionism stuff.

In your shoes I would want to be sure that she gets enough calories first of all, and as her weight/ periods are more regulated then the emotional side is better diagnosed. Of course professionals to guide you!!!

On a personal note, many years ago as a young adult I was at my lowest BMI (18%) and at that point so anxious and sad all the time I had zero appetite. Food tasted like cardboard. After my WR, wow it was like discovering the joy of food again. Just saying I know this illness is real and it stinks.

The good news is you are on alert, you are working in this, and there will be more Christmases when you will be so thankful that you took the lead. My d's summer was spent almost bedridden and being forced to eat. I get how hard it is. But I can't imagine how much harder it would be wifi we had not taken action.

Wishing you all health and answers,
SS
Seekingsunshine, found many rays of hope in the last year of treatment. D 14yr old- restricted since about age 9-10, dx at 13 when I felt she wasn't growing, FBT/maudsley summer 2015, WR Sept 2015, but have to keep chasing moving target. Not ready for eating independence.
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seekingsunshine
Just saw your post about dr saying emotions need to be addressed!!!
Important to first find out if she needs to be re-fed...I highly highly suggest seeing or talking to an ED specialist who knows the brain as it relates to starving. Can't address emotions if there is no logic going on.
Even with the most intelligent children/teens. Take care.
Seekingsunshine, found many rays of hope in the last year of treatment. D 14yr old- restricted since about age 9-10, dx at 13 when I felt she wasn't growing, FBT/maudsley summer 2015, WR Sept 2015, but have to keep chasing moving target. Not ready for eating independence.
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linefine
"Just saw your post about dr saying emotions need to be addressed!!! 
Important to first find out if she needs to be re-fed...I highly highly suggest seeing or talking to an ED specialist who knows the brain as it relates to starving. Can't address emotions if there is no logic going on. 
Even with the most intelligent children/teens."

Yep, that's what I said to him, and he said there's a fine line and it's probably a bit of both.  However, I can probably get a referral to my own psychiatrist, who is himself an ED specialist.  If we can't go through the NHS, or if it's going to take ages, we'll pay for the first appointment privately and get into the system that way.
Heather

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always PROTECTS, always TRUSTS, always HOPES, always PERSEVERES. Love never fails.
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sk8r31
In your shoes, I would run, not walk, to get a referral to someone with  training on up-to-date evidence-based ED treatment.  If that is your psychiatrist, that's a starting point, since you already have some contact.

The Academy of Eating Disorders (an international organization) has a good booklet on medical risk and management of EDs.  You can download it here, and give it to your GP or any other medical provider.

Sending 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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Torie
linefine wrote:
....I can probably get a referral to my own psychiatrist, who is himself an ED specialist.  If we can't go through the NHS, or if it's going to take ages, we'll pay for the first appointment privately and get into the system that way.


Thank heavens for that. Many here (raises hand) have found that bad help is worse than no help at all, so I'd be very leary of Dr. number one. So glad to hear about option number 2.

I don't know what to suggest wrt your s. I'll keep thinking. I don't have experience with AS, but sotired's suggestion makes sense to me.

Keep swimming. You can do this!

xx

-Torie


"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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