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Foodsupport_AUS

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Reply with quote  #26 
I am so sorry that you have been left with such poor quality care. Your GP seems clueless, as does I am afraid to say the nutritionist. I suspect she may also believe in rainbow coloured unicorns, and am very sure that she is not working in evidence based care at all. What you describe is a lot of pseudo science without evidence to back it up. 

I also find it amazing that you can be told that your D does not require inpatient care, and they haven't even laid eyes on her. 

If D is at least willing to see the GP perhaps one of the things to do is work on educating the GP and then when she is educated a bit better try to get that to work more. Clearly suggesting a teen only eat 1200 calories today is far from ideal, but where there is lack of knowledge but not dangerous beliefs at least there is room to educate. The guidelines for the UK that apply to your D are on this page https://www.nice.org.uk/guidance/ng69  They can be downloaded and I would suggest reading through the parts that seem to be relevant to your D. 
They suggest review by GP on a regular basis if treatment is refused but also talk about compulsory treatment if she is severely ill. 



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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.
tina72

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Reply with quote  #27 
Quote:
Originally Posted by clem
1. CAMHS called me on Monday morning and advised ( by new consultant who has not actually seen D, has only had one session with me) that D does not need to go on medication and in regard to IP, that was a no as well. They wanted to move forward in another way and suggested that I meet with the EDS team on a regular basis (since D refuses to engage with them herself) and try it that way, I assume they are talking about continuing with Maudsley method and FBT. They also suggest that I get more scales and blind weigh D once a week to monitor progress. They also want me to work with their EDS nutritionist (who does not exist, I have been trying to get an appointment for 8 months!) This I am not happy about at all.


That is very poor and unprofessional work to say that she does not need medication and IP without have seen her. Please don´t listen to them and buy NO NEW SCALES! Blind weighing once a week is good, but have that done at GP. No scale in the house.
The EDS nutritionist is worthless when they don´t help you to get her to eat what she needs to.

Quote:
Originally Posted by clem
2. We went to GP on Monday too. D was with GP for a around 30 minutes, I went in after for a private chat. They do seem to get on well and at least D engages with her. In my chat the GP said not only am I dealing with an anorexic child, I am dealing with an extremely stroppy teenager and needs to figure some things out for herself. She suggests that D stay on 1200 calories for a couple months and up it from there, when D is ready to make that decision (she made the last one and accepted the additional snacks I was giving her). She set D a target and that was to go back to school in September and to think about what she needed to accomplish before that can happen.


So that is your chance I see: if D engages with her, get her into the boat. But she needs some education I believe; to think that a teenager can live on 1200 calories for months is not acceptable, even for a healthy teenager. And to wait for her to "make that decision" is senseless. It will not come. Can you imagine that you can make the GP read Carrie Arnolds "Decoding Anorexia"? It is a great book and it explains all AN behaviour in a scientific way and that might help her to understand why it is so important to help her with decisions about food.
Can the GP ask CAHMS for a referral for IP? Maybe that would make them listen...?

Quote:
Originally Posted by clem
3. I went to a private EDS nutritionist. We did not discuss calories or weight in the first session, she wants to get to the root and suggested that D have an 'adrenal stress profile' done, she is convinced that Ds adrenal levels are out of whack and her cortisol is too high and needs bringing down. She has recommended 10mg of DHEA (to help level out adrenal levels and improve anxiety and mood). Apparently this is why she is so anxious, stressed, depressed, volatile, angry etc........ she feels that if we can sort this out first, D will be more receptive to the magic plate, FBT, Maudsley etc... She also thinks D's body is too acidic and full of bad bacteria, based on all the that carbs she is eating, so this needs addressing too.


I hope you did not spend much money on that, she seems to have no informations about ED and I think she uses your d as a guinnea pig. Her adrenal levels and her cortisol may be out of order, but that is surely not caused by "acidic and full of bacteria", as carbs do normally have NO bacteria in (if you do not forget the noodles for weeks in the fridge [wink]), it is all based on malnutrition and nothing else. She is anxious and stressed and depressed because of malnutrition. That is known since the Minnesota starvation project in the 1940s.
You don´t need any nutritionist. You know what she should eat. You just don´t know how to require her to do it. Thats where you need help.

Quote:
Originally Posted by clem
I am trying magic plate, for weeks now to no avail AT ALL. What I have managed to do is get around 200 more calories into D a day with snacks. She was only eating 3 meals a day and feeling terrible in-between and it was only because she was so close to being readmitted into hospital that she eats the extra snacks. So this is certainly progress, but not enough. All food I make gets thrown away, does not matter how many batches and how long we sit at a table. She reverts to 'her' meal plans. (Pasta, pesto, cous cous, tofu, yogurt, porridge - all good stuff - but not enough -  if i add more it get thrown away) It's also hard to monitor, because I am not home 24/7, she is with my Mum 2 days a week whilst I work.


Did you try to introduce a healthy looking fruit smoothie? Try to wake her up early in the morning with that smoothie in your hand and just say "drink that now". In many cases AN is asleep early in the morning. You can add canola oil / rapeseed oil to the fruit and juice mix and it disappers in the blender. If she drinks that twice a day ("for her vitamins") you could get easily 500-1000 calores in. You can add up to 100 ml oil to 400-500 ml fruit and she will not smell or taste it. You can freeze it so you can prepare them when she is not at home.

Quote:
Originally Posted by clem
Based on all the advise above, I am at a loss for words. this is my professional team? I am very interested in what the nutritionist says, but really struggling with the suggestions.


This is not a professional team, I am so sorry for that. A lot of us have experienced that and if you do not find a better one, you might need to fight that alone.

Quote:
Originally Posted by clem
In the meantime, my D is constantly nasty towards me (only me) barks orders and otherwise hurls verbal abuse at me. She has not forgiven me for throwing out the scales (everything is my fault since) and is even more body checking, disordered thinking and appears to be having auditory hallucinations (she had a bout of this pre anorexia and in the trenches of anxiety).  She is extremely anxious, if she doesn't poo at the same time every morning, the world ends... she is constantly saying she is 'done' and wants to die. Although I am very concerned about this, I think it's more of a cry for help. She is 100% unhappy that is for sure.


Her behaviour against you is not your d, it is AN. That is normal. AN tries to seperate you to have 100% control about your d.
Try to offer her help when she says that. Tell her that you love her and that you will help her but she needs to let you help her. Tell her that you have talked to a lot of experts and that you know how to help her.

Quote:
Originally Posted by clem
All I feel I can do is keep doing what I am doing and pushing it and then up the game end of May (where I have taken all of my holiday leave May - Sept), as I work in education, it's gets quiet over the summer so can work from home too.


That may be a possibility to get a new start because you need time at home to watch her 24/7.
The biggest thing is to get her to eat. Did you watch Eva Musbys videos?
What about having a skype-session with her? Would that be an idea to get started?

Tina72

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Reply with quote  #28 
Hi Clem, thanks for the update.

I would not get another scale. It is the responsibility of the ed team to monitor your d medically.

I quickly added your d's stats into a site, which calculates calorie requirements, based on 14 years of age, weight of 45kg and being inactive, she needs 2000 calories. This is for a healthy child! To suggest your child should eat anything less than what a normal child requires is ridiculous! The stroppy teeanager bit will also reduce when ed is out of the door. My d was very stubborn when we just started on this journey, it went away only after 6 months of wr. At this stage you should attribute most of her behaviour to ed. Also your d can't think about what needs to happen for her to go back to school. Just shaking my head......

As for your private nutritionist, all the symptoms you mention are due to malnourishment, not adrenal fatigue. Only when she is wr for months, can you see what else is wrong. Sorry if I'm sounding preachy. I know you are looking for help, any help. I was the same, keep on looking and meeting with them, hopefully CAHMS will come through with a nutritionist appointment soon.

If her team doesn't want to put her on medication, you can try natural meds. There is a thread here not too long ago, which lists some meds. Here is the link:
http://www.aroundthedinnertable.org/post/anxiety-medication-9705092?highlight=medication#gsc.tab=0

If magic plate doesn't work, you can put her mealplan for the week on the fridge. Put all her safe food on it and add some plain snacks. This will reduce her anxiety. It will take several weeks before she would be able to follow it, but keep persisting. Deenl's son was refed without magic plate, here is her thread: http://www.aroundthedinnertable.org/post/the-super-resistors-when-lsuye-and-magic-plate-cause-total-shut-down-8122350?highlight=magic+plate+doesn%27t+work#gsc.tab=0

Best of luck with your hip and back scan, it's tough that you have to deal w ith thsst on top of it all.

Sending you lots of hugs 🤗🤗🤗🤗

__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
clem

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Reply with quote  #29 
Thank you so much for this monring's posts and advice. Once I wrote out the 'advice' and conversations given from GP, CAMHS, private nutritionist, I was positively seething! I will look at the links Mamaroo, thank you. I am going to have to wing it and think of other ways to re feed her.

I do need help though, so will see the GP and get her educated. I think she will be willing to get on board.

Ugh! This really is trench warfare!

Hopefully the ex is moving out next week, he was so cross that I hid his scalpels! He uses them for air model building. Just does not get it, but that's ok, he's going soon enough. This will certainly remove some pressure.

You are absolute legends, thank you.

I keep reminding myself this is a marathon, not a race.

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D15, Restrictive AN. 5' 8" and 51kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse/recovery. In the trenches and tackling FBT. Not a vegan anymore!
sk8r31

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Reply with quote  #30 
You are so right Clem...this is a marathon, not a sprint.

I agree with the notion that with a GP willing to be educated, you can achieve a lot.  We had a physician who was willing to take everything I gave her from our UCSD week & photocopied the lot for all the docs in her practice.  She said she had learned a lot from our journey.

It took me a long time...really much too long...to feel confident to 'ditch' the team members who were detrimental to our journey.  The RD who met with d separately & told us not to be the 'food police' and undermined any suggestion I made.  The T who told us 'FBT will not work for your family'  and the pediatrician who took me aside one day and said that 'your husband is causing your d's AN'.  We left that ped the following week, but the others....well, we kept seeing them as there was no one else in our small community.  Big mistake.

Fast forward a couple of years, and we found a new team 90 miles away, and got training at the UCSD 1 week Intensive Family session.  I realize you are in a different country, under the CAMHS system, but I do want to underscore that you have power to educate providers or to decide not to see them.  It is not easy, but armed with good evidence-based information and with the emotional backing of peer support, you can forge ahead.

Sending strength and support,
sk8r31

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Torie

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Reply with quote  #31 
Clem, I don't remember if we have already discussed this, but I wonder if there is any possibility of bringing your d to the US for a weeklong intensive family treatment at UCSD (California) or the one in Ohio.  In your shoes, I think I would aim for that if at all possible.  Your team is undermining you and disempowering your efforts - the weeklong program would - at a minimum - provide validation that your efforts and ideas are correct.  I, too, was undermined by the local "professionals" and was lucky to be able to visit CHOP in Philadelphia where the true experts provided validation for my efforts - that made so much difference.  It is plenty hard enough without being undermined by your "team."

As for the scales, my d's therapist insisted that d be blind weighed.  It absolutely drove my d nuts.  She was out of her mind with fantasies that we would make her weigh 200 pounds or that she already did or whatever.  And she was repeatedly able to find out her weight anyway for example at the annual school weigh in, by whirling around fast at the blind weigh in at doctor's, at a friend's house.  Eventually we allowed her to know her weight, and that worked out much better for her.  So I wonder if a compromise might help your d.  Some here have found scales that don't show the weight on the scale but rather send the weight to your phone. (Or something like that, I didn't understand it well.)  Maybe something like that where you / she could weigh her once a week.

With you in spirit. xx

-Torie

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Doitagain

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Reply with quote  #32 
Hi Clem,
REpeating what others have said you need to read the NICE document thoroughly. Also, the Marsipan junior document. You need to be super educated on the "system" and what you should be getting and what should happen at certain points. I must empathise should, as you may not get it without a fight. You have won the scales battle! Well done. Leave weighing to the doctors etc. If she refuses to be weighed... well.. that is more evidence that she needs more care. As for flipping out if she doesn't poo - that is just pure anorexia thinking - pooing means you feel lighter. Ignore that - don't entertain any suggestions of mild laxatives (I know you won't). You need more food to poo! You will win that battle too - just say - you need to eat more to poo. Check the house for laxatives too and bin them. At 1200 calories she will lose weight, no two ways about it. If she isn't losing weight on 1200 calories and sneaky exercise then she is water loading and lying about her weight. I'm sorry but that is a real fact. I dont like the idea of leaving her with 1200 calories. For a week maybe but the week is up now. I can see what the doctor is trying to do but it just plays to anorexia. I do think that somebody , and it should be cahms or the doctor, should point out the two choices and the two roads. And there are ONLY two. There is not a third. Eat at home, you will try to help, you'll get her a great team and take it step by step with her. And she will get better - not fat, better. That is choice one. Choice two is to continue as she is doing . That road will lead to inpatient where she will have to eat. That is the ONLY ending to that particular road. It might take a month, it might take a year, but that is where she will go. Please tell her that you know it is hard and horrible , but you have every faith in her that she will make a wise choice. Remind her that right now she is choosing herself. If it goes much further she won't be choosing, it will be decided for her.

It's awful and I feel for you as I've been there - my D was a very very entrenched severe anorexic and had to go in. When she tells you she hates you tell her you love her and you know how hard it is right now. I do think she may well need medication and sometimes a low dose is a real game changer. Why are they saying no? Please tell them that YOU can't cope either and that you, who deal with her 24/7 believe she needs it. Low dose Olanzipin can help the shift. Virtually every child impatient is on medication - it is given to help them deal with an appalling illness - she should not be denied it . You know best. Ignore the hate, heartbreaking as it is as she will come back to you when she gets well, and believe that she will get well. ED makes our children hate us - it happens in virtually every case - seriously! But as you know, it is a 24/7 job you are doing with her. I want to give you hope when you are stuck in the trenches. You are in brilliant company here. If you can access a "skills based learning for dealing with someone with anorexia" course it will help YOU a lot. Then it will help you to help her. My daughter is recovered and away at university. If you told me that 3-4 years ago I'd have laughed (or cried) in your face. She races home for home cooking, sometimes ringing in from the train with her "food wish list". And there are no salads in that list ever! Pizza deliveries the lot. It took impatient and great aftercare for a full year on discharge (it was still a very hard year) but she got there. Batten down the hatches and each week think" right what am I going to do new this week to kill this ED beast. Whether that is writing to Cahms, ringing the doctor, introducing a new food, working on getting medication sorted, getting therapy sessions in place or increased , taking her to the cinema , exploring inpatient options ) keep the contact with her and all professionals firing on all cylinders. You can do this and so can she.
clem

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Reply with quote  #33 
Hi,

Thanks everyone. Have read the NICE doc and will take it to the GP, she is on leave for a couple weeks..... sigh. 

Torie, I would love to come to the US, but it's out of the question financially and logistically.

I have got to CAMHS on board urgently, as they are the only ones with the authority to approve medication and IP. She needs both in my opinion, or at the very least medication. Honestly her mood gets worse by the day. I actually feel like I want to bolt and never come home. I am really struggling to concentrate with work, and hardly going in is starting to be a negative impact.

We have no meds in the house, only stuff for my health issues and that's locked away in the conservatory and no laxatives in the house. Never use that stuff, I always went down the prune juice route lol.

I really cannot get more food in her, it's awful. she will not accept more. Gets extremely violent etc... and we go back to square one, every time for weeks now.

Doitagain, I hear you and yes, sound advice.

" Batten down the hatches and each week think" right what am I going to do new this week to kill this ED beast. Whether that is writing to Cahms, ringing the doctor, introducing a new food, working on getting medication sorted, getting therapy sessions in place or increased , taking her to the cinema , exploring inpatient options ) keep the contact with her and all professionals firing on all cylinders. You can do this and so can she. "

THANK YOU ALL.

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D15, Restrictive AN. 5' 8" and 51kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse/recovery. In the trenches and tackling FBT. Not a vegan anymore!
clem

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Reply with quote  #34 
Breakfast was a disaster. I really cannot cope alone anymore and neither can D. She screams at me because I cry (and I try to do this away from her). If we would have had one day or even one meal, since i started magic plate and then also tried to compromise (a little) that she can have her normal meals (that she chooses, which are good choices) and I come up with the snacks and dinner. But nothing I try seems to work, not in her state of distress.

it's just too much.

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D15, Restrictive AN. 5' 8" and 51kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse/recovery. In the trenches and tackling FBT. Not a vegan anymore!
tina72

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Reply with quote  #35 
Hi clem,
so sorry for what you have to stand at the moment.
Can you tell us more detailed how the meals/snacks are at the moment? Not what you serve, but how she reacts and what you do/say then? Maybe then we can help you better with ideas what do do or say.

"I have got to CAMHS on board urgently, as they are the only ones with the authority to approve medication and IP. She needs both in my opinion, or at the very least medication. Honestly her mood gets worse by the day. I actually feel like I want to bolt and never come home. I am really struggling to concentrate with work, and hardly going in is starting to be a negative impact."
I would call CAMHS and tell them that you are near carer burnout and that you need help ASAP.

Tina72
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Reply with quote  #36 
Hi Clem

I am really sorry that things are so bad. In relation to CAMHS, I agree with Tina72 that you should keep phoning them. One of the criteria to go IP is when parents can no longer deal with it at home. This certainly formed part of my D’s referral. If you don’t get anywhere with them ask for the number/ address of the commissioners, as they are the people who make the IP decisions. Which part of the country are you in? We were really lucky with our CAMHS team, but it is hit and miss. The other thing might be to phone some IP units directly for advice.

I hope you get some help soon. Sending lots of love and support.
Yellowcaty
clem

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Reply with quote  #37 
Yellowcaty! Thanks have been thinking of you too! Hope your IP visit went ok?

Thanks and thanks Tina72. Basically the reaction is to scream and shout, throw anything nearby at me or across the room. The food or smoothie either gets left or thrown on the carpet. I just have to keep doing it, until it becomes routine.

Two good things happened yesterday (one for my sanity purely) my re-mortgage was accepted, so now I can 'buy out' my ex partner and he can move out of the house (has only been around weekday evenings) but it's been positively awful. 

Ex partner brought some scales into the house!!! He was weighing stuff for a trip I guess (having told him not to ever bring scales or sharps into the house), I nearly had a volcanic eruption when I saw them, there they were alone in the blooming downstairs hallway for all to see. D looked at them and did nothing! OMG. She did get very upset later about tightness of clothes that wern't tight before.. but we have this behavior all the time.

Tiny things, but I have been able to gain some sort of sanity check. I think that I am that pushed over the edge, I am a quivering jelly and the last few days have been unbearable.

I am making D's favorite pesto today, planning on adding some high cal secret ingredients. have also figured out a way to add some calories to her ice lollies that I make every evening.

So, CAMHS - what a joke, I phoned 3 times yesterday to speak with the EDS consultant (the one who said D does not need meds/IP and has not yet met her). I got nowhere and on the 4th call, was told he left for the bank holiday weekend. I will be on them again on Tuesday, demanding that they step up and see D urgently to re assess her and her needs.

So although I am still living with a head spinning AN exorcist, I have my sense of humor back and sneaky little plans to increase calorie intake. This is thanks to you guys for simply being here and supporting me and offering some very sound suggestions.  

xx

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D15, Restrictive AN. 5' 8" and 51kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse/recovery. In the trenches and tackling FBT. Not a vegan anymore!
tina72

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Reply with quote  #38 
Hi clem,
"Basically the reaction is to scream and shout, throw anything nearby at me or across the room. The food or smoothie either gets left or thrown on the carpet."
Screaming and shouting is something you have to stand. It is ED that screams and shouts and that will get better if you stand there like a wall and do not engage in screaming and shouting. Try to stay calm and answer with a nice and calm voice that you know it is hard for her but that is the way you will do it now and it will get better. Then change the subject.
Throwing stuff is not acceptable. It can hurt you and the things will get broken.
My ideas:
Can you take away all stuff from dining room or your eating place that can be thrown besides food? I know families who just had a table and a chair left so nothing there to hurt someone or to throw. If that is not possible, can you have a small room changed into a safe eating area?
You must tell her that you will not accept throwing things and this needs to have consequences. Can you take her cellphone if she throws something and she can get it back after finishing the next meal/snack without throwing things? Maybe the announcement to do that would be enough?
Throwing food: You need to replace that asap. Use plastic plates so they cannot be damaged. If she throws them on the floor, take them up calmly and put another portion on it. You can tell her before the meals that you will do that and that the replaced portion will be bigger if she throws food on the floor.
What does she do then? Run to her room? Did you already get her finished a plated meal?

I think you did a really good job with the scales and your d inside knows that this was the right thing to do and you see that how she behaved when a scale was there for a short time. She looked at it and did nothing!!! She did not weigh herself asap!!! That was a victory for you! ED: 0 clem: 1!!!

Phone CAHMS on Tuesday again. I fear you need to nerve them. If you ring up daily they will need to do something at least.

"So although I am still living with a head spinning AN exorcist, I have my sense of humor back and sneaky little plans to increase calorie intake. This is thanks to you guys for simply being here and supporting me and offering some very sound suggestions. "
That sounds great and we are here to help you. Ask, ask, ask.
My idea for ice lollies:
Make some heavy fruit smoothies with added canola oil (dissapears in the blender) and freeze that. That looks light and healthy. I hope it gets hot where you live so she will need more ice lollies through the day...[wink]

Can you tell her that many AN patients lose their hair because of leck of minerals and vitamins? My d lost nearly half of her wonderful long blonde hair. That was the first consequence that frightened her. Maybe your d would then accept to drink a smoothie "for vitamins"?

Keep swimming. You are doing great. Think about other ideas where you can add. Some mums did change milk in containers in the parking lot of supermarket (full fat into half fat containers). Some added canola oil even to orange juice. You need to be more tricky than ED. You need to have some fantasy.

Tina72
Mamaroo

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Reply with quote  #39 
Hi Clem, glad to hear you feel more positive! This is such a long and hard journey, one has to high five the good moments 😁.

Tina gave you great ideas. My d couldn't eat with the rest of the family, so I took the food to her in the spare bedroom (as she was sleeping very badly, I moved with her into the spare bedroom and spent the nights with her) where she ate it. I would play Candy crush on my ipad while she directed my moves. This distracted her and if she stopped eating I would stop playing: "I will make the next move after you take the next bite". 😃

Apart from a bed, small wardrobe and a counter, there was nothing in the room. I would even remove hard cover books if she starts to act out, since she would hit her head on it. I would also tell her that I would take her to emergercy. This helped to stop her selfharming.

Yes, keep on ringing until they help you. As the saying goes, it's the squeaky wheel, which get oiled!

My d used to eat frozen yogurt, which I made from normal yogurt. If you can use yogurt for the ice lollies, you can add the calories by using greek yogurt.

And yes, I used to add cream to one of the milk containers, which I used for my d. I also made porridge with half milk, half cream. You will get through this.

Sending you best wishes and plenty of hugs 🤗🤗🤗🤗🤗

__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
clem

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Reply with quote  #40 
Thanks for the 'eating room scenario'. We have a rather open planned house, so not an easy situation and until my ex moves out, the spare room and a lot of the house is full of boxes, stuff and no room! We do have a sitting room that is not used very much and although out of the question right now (a lot of glass cabinets in there), I can probably use this, as soon as my ex moves his furniture out, it could be ideal. I was planning on setting this room up with bean bags and cushions - a zen place.

I will just clear the room we use at the moment (TV room). I think I need to use leverage. D has a mobile phone and a tablet (to watch tv/film videos on, PS4 for games). There is nothing else she has, I'll have a go with these. I have restricted her internet usage.

Tina72, yes the hair, I have gone through all of this, the hair and the brittle nails - to no avail. What made her eat a few 100 more calories a few weeks ago was the prospect of heart failure (she was faint/dizzy/0 energy and not breathing well at night). Right now, D is STUCK in self loathing mode, she feels no consequences. I was in a lot of hip pain yesterday and she totally ignored it and kept on with the usual barking orders and shouting.

One big question I have and not sure how others have dealt with is -  the new surge in self disgust, anger and distorted body image, now we have removed the scales for 10 days, D is body checking a lot, changing clothes often and coming to me often (certainly just before bed time) in a skinny vest and tights and demanding I agree that she has gained weight, she is convinced of this (and yes, she has gained probably 1.5kg in a couple weeks, so there is a slight slight difference, the gaunt look is a little softer, that is all really, as she is tall). She looks a lot better, but I am so scared to say the wrong thing. I just say you are a beautiful person, and regarding weight i just say ' i don't see any difference' This all infuriates her, makes her scream and shout, calls me a liar etc..... and she goes on and on and on.... and suggestions on how to speak to this? I know when her brain heals, this will too, but in the meantime, it's quite awful.

This morning smoothie got poured on my head. Although the dogs loved that I tasted so good, it was not a fun situation. At least D ate her normal breakfast (I sneaked in calories).

Another tricky bit, I can't do the re-feeding thing 3 days a week, as i am at work, so it's really hindered at the moment, and i can't expect my my 80 year old Mum (who stays with D whilst I am at work) to do this. D just has her normal food, but I will continue to sabotage it for the better[smile]. Thankfully in a few weeks I have some leave and can up the game.

My Dad is going to help me with CAMHS, I will keep calling from Tuesday when they open and he will too (he has a way of getting people to listen). We will continue to pursue the IP avenue and meds.

Thanks for the much needed hugs, right back at you.

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D15, Restrictive AN. 5' 8" and 51kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse/recovery. In the trenches and tackling FBT. Not a vegan anymore!
Foodsupport_AUS

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Reply with quote  #41 
Quote:
 D is body checking a lot, changing clothes often and coming to me often (certainly just before bed time) in a skinny vest and tights and demanding I agree that she has gained weight, she is convinced of this (and yes, she has gained probably 1.5kg in a couple weeks, so there is a slight slight difference, the gaunt look is a little softer, that is all really, as she is tall). She looks a lot better, but I am so scared to say the wrong thing. I just say you are a beautiful person, and regarding weight i just say ' i don't see any difference' This all infuriates her, makes her scream and shout, calls me a liar etc..... and she goes on and on and on.... and suggestions on how to speak to this?


As best you can the best thing to do is not to answer it. Something along the lines of: "I know you find this very distressing but it is unhelpful for me to discuss this with you". After that just add hmmm to any repeated questions. Her eating disorder will learn that you are not going to play into this game. By neither confirming or denying you are pointing out to her that it is her anxiety that is the issue not whether or not she has gained weight. Become that broken record. 

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Reply with quote  #42 
Echoing what FoodSupport has said.  You can acknowledge your d's distress, but avoid any discussion or engagement beyond that.  You just can't have a discussion with ED...it's impossible.  Your d right now can't really hear or process any logical discussion about her ED.

Working on your own distress tolerance....how to manage listening to your d's rants...is a key strategy to develop.  And your own self-care, as best you can.  Short walks around the block, bubble bath, adult beverage with a friend...whatever small measures you can put in place to help yourself get through this challenging time.

Eva Musby has some compassionate meditations to listen to either before or after giving your d a meal or snack.  Many have found them helpful.

Hang in there!

Sending warm support,
sk8r31

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clem

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Reply with quote  #43 
Thanks again for the tips, for the most, I am extremely calm and do talk calmly and quietly. We just had a episode now. I was calm and said nothing at first, then said 'I am sorry this is causing you so much distress'. She just shouts abusive language, calls me a liar and very unsavory words. D is just about to eat, so this is quite an unusual time of day, it's certainly escalating in frequency.

I do think that her anxiety is spiraling out of control, this part is not getting better, it's in fact getting worse. D is 100% angry, all the time. I cannot a single 'civil' conversation with her. I find that i need to prepare her a little in advance about what my work schedule is,or if a workman needs to come to the house etc...  but the response is nothing but venom. But those things just have to happen and that is that!

It's almost as if the calmer I am, the more it infuriates her.

I have tried everything to reassure her, calm her, distract her etc...... but there is nothing that will work, except of course getting more calories in her, which I am really struggling with too. Grrrrrrr.

So frustrating. I have one special 'me treat' and this is when I need to go out in the car, it's when I have the only uninterrupted time and in this warm weather I drive with the roof down and Fleetwood Mac (or something like this).

I love my little car, but as old and rickety it is, it has to go! When ex leaves, I'll need a more suitable for myself, D and 2 large dogs! Buuuuuuuut, I do have it for now! yay!

Thanks and will keep on trying your suggestions!


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D15, Restrictive AN. 5' 8" and 51kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse/recovery. In the trenches and tackling FBT. Not a vegan anymore!
sk8r31

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Reply with quote  #44 
I can't remember if your d has tried meds for the anxiety.  My d had pre-existing anxiety, which became overwhelming with ED.  Finally getting the right combo of meds on board helped her to quell the anxiety enough to eat as needed.  Not that she was a compliant eater then by any means, but the meds helped to 'quieten down' the overwhelming anxiety.

Sending warm support,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
clem

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Reply with quote  #45 
Same here sk8r31, my D has always been an anxious child and AN has really amplified it. Not on any meds as yet, apparently the consultant does not think she needs them, which is complete hogwash. He said this without even seeing her, whish is why I am going to phone and keep phoning until I get a result, that and IP (even if she is on a list).

Yes, if meds can quieten it down, even a little she might be more receptacle to eating more, as well as simply holding a conversation.


xx

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D15, Restrictive AN. 5' 8" and 51kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse/recovery. In the trenches and tackling FBT. Not a vegan anymore!
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Reply with quote  #46 
"I do think that her anxiety is spiraling out of control, this part is not getting better, it's in fact getting worse. D is 100% angry, all the time. I cannot a single 'civil' conversation with her. I find that i need to prepare her a little in advance about what my work schedule is,or if a workman needs to come to the house etc...  but the response is nothing but venom. But those things just have to happen and that is that!

It's almost as if the calmer I am, the more it infuriates her."

ED is trying to seperate you so it can control your d better. If you stay calm although she says all that awful things to you, that does not work. And then ED goes through the roof.
Try to stay calm and compassionate although she is so bad and angry at you. It is ED. I know that is hard but ED takes all her compassion for others. She cannot feel that any more.
My d does not remember much of the bad days and what she said to us. But what she remembers is that unconditional love she felt. She felt inside that we love her and that we will help her, although ED made her say she hates us in the same moment. That is something she sees today very clearly, that whatever will happen in life and whatever she will do, we will love her and we will help her out. Try to hold on to this hope. It will get better and she will be the nice and lovely girl you had before.

Do not engage in body talk, as the others said, you can only lose that fight. Tell her that you will not answer these question as she does not believe what you say at the moment and then change the subject. ED will hate you for that but she will stop that talk when you don´t engage with it after a few days.

Hey, I also have an old car (1988, this year going to be an oldtimer in 2 weeks) and I also love Fleetwood Mac! Another good song at the moment is Gloria Gaynor "I will survive" and Elton John "I´m still standing"...[wink]

Another hug,
Tina72
clem

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Reply with quote  #47 
"My d does not remember much of the bad days and what she said to us. But what she remembers is that unconditional love she felt. She felt inside that we love her and that we will help her, although ED made her say she hates us in the same moment. That is something she sees today very clearly, that whatever will happen in life and whatever she will do, we will love her and we will help her out. Try to hold on to this hope. It will get better and she will be the nice and lovely girl you had before"

Thank you Tina72, this is so helpful and yes I will hold onto that.

Yes, I think the 'broken record' non body talk Mum is really infuriating AN, I'll keep at it though.

Love your taste in music! It can be a real lifesaver! Old cars are great, very easy to fix, no electronics lol.

Hug back to you.

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D15, Restrictive AN. 5' 8" and 51kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse/recovery. In the trenches and tackling FBT. Not a vegan anymore!
tina72

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Reply with quote  #48 
Maybe we should open a new thread with helpful music for carers...[biggrin]

You are a warrior and a great mum. Do not allow anybody (and even not AN) to tell you anything else.
Keep swimming. Keep adding. ED wants to fight? You are in position!

Tina72
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Reply with quote  #49 
Tina- I love what you wrote about your daughter not remembering what she said- but always remembering the unconditional love. Just beautiful.
clem

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Reply with quote  #50 
Hi everyone!

So I spoke to CAMHS today, the EDS lead for D (not the main consultant, but equally useless).

She said in relation to the 24/7 shouting, screaming, constant distress and anxiety, the body checking, rising distorted body issues, D has a behavioral issue and I really should call the police. I said I would only do this is there was a danger to life, otherwise I imagine it would only make things worse, exacerbate the situation and further alienate and distress D. I will not call the police if D is having a tantrum.

I said D must have something (meds) to calm her acute levels of anxiety and the response was the consultant will need to see D and reassess her. D cannot face going to the CAMHS treatment centre at the moment, too much poor support has completely put her off. Not sure what to do about that... I can literally only get her to the GP, which is a 5 minute ride.

IP, out of the question, D does not fit the criteria according to CAMHS. When I said that I cannot cope, it was suggested that D maybe could stay with her Dad. CAMHS know our family dynamics and situation and know this is not an option at all, what a stupid suggestion. My response was, HELP ME THEN! I cannot do this alone, a single working mother.

I have yet to see their nutritionist that they insist I work with.  They have offered to come to our house to help Daisy work on anxiety (this was before she went downhill mentally). As D struggles to engage and needs a lot more than house visit that will only elevate her anxiety at the moment, they feel that since D is not complying and not engaging, there is not much more they can do and that's that really.

They want me to go to them for meetings to discuss how to help D. There is no discussion of food, meal plans etc... nada, if did not know what I need to do, I would be terrified. I just need help and support and possible IP.

I said that as D is getting worse every day with her mental state, I am concerned she is going to snap or something bad is going to happen, the response was, call the police and this is what the  out of hours CAMHS crisis team is there for. Every time I have called them, they just say to call the police or call back on a work day.

I am seeing D's GP this week to begin education and try that angle. I am also going to phone the consultant that was on the ward when D was in hospital, he might be able to advice further support. he was a good egg.

Still trying the re-feeding, but not exceeding 1200 calories.

Definitely a pants day.

Sending flat hugs, but hugs all the same.

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D15, Restrictive AN. 5' 8" and 51kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse/recovery. In the trenches and tackling FBT. Not a vegan anymore!
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