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mjkz

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Reply with quote  #26 
hopefulheart, one thing someone said to me that was so helpful was you can hit the restart button at any time.  You know what works!!!  You got 8 kg on in three months so go back to what you were doing.  If hubby can't support you, then he needs to at least keep quiet and stop interfering.  If your "professionals" don't support you, don't continue to support them.  You pay their salary so if they aren't doing their job, kick them to the curb and let someone else deal with the crap they are spouting.  Until you hit full weight recovery, you're not going to see any changes.  I wish I had better news but I've lived this for almost 20 years and nothing changed until my daughter was weight recovered and we broke all her rules and eating habits.  You can do this as seen from your earlier success!!
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Reply with quote  #27 
Thanks so much to you all for your replies. I finally got some sleep last night and when I read my post again, I realised how desperate I sounded! I was at the end of my rope and this board is a lifesaver. I have lurked for a while but had got to a point where I needed some validation for my feelings!
Your supportive comments have been a real boost and I'm humbled that you take time to help others, whilst facing this struggle yourselves.
I probably painted my hubby in a bad light and he really isn't and doesn't mean to be unsupportive, he just doesn't get the weight thing and how nothing can happen until we get that right. I've had too many experiences with doctors and other professionals offering damaging advice that I find it much more difficult to trust them than he does. Nobody believed me when I first noticed she was in trouble - not even him- and I have found it difficult eversince to make myself heard by him without bringing that up and sounding mean.
I agree, it seems so wrong that parents on this forum have learned the hard way and are the experts in knowing what their children need, whilst many of the professionals sometimes just can't see the obvious.
Thank you for reminding me that I HAVE done this before and I know what I need to do. The Anorexia has made my daughter so distrusting of me that she is not as compliant now, however, as she was 2 years ago.
The Anorexia tries to control many of our decisions because it was allowed a voice when we we were with professionals who did a lot of damage. It is taking soooo long to undo that damage. My girl seems to believe that we can only make changes or introduce new things if we discuss it with the therapists first. So we end up going for 2 weeks between appointments, treading water with me chomping at the bit to get going with what I need to do, while my daughter gets more entrenched. That's where I think we're 'stuck'. We just need our confidence back and to recognise that WE are in charge of the decisions, not the therapists; helpful as our new ones are.
I don't need their permission to make changes. I know what I need to do. And I think what you're all saying to me is to get on with it!!!
I will continue to seek your advice and increase my knowledge as much as I can. It is all of YOUR advice I trust.
Thank you all for taking the time to care.
Torie

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Reply with quote  #28 
Welcome, HopefulHeart - So sorry you needed to join us here.  

My heart goes out to you, having to fight this mostly by yourself.  I wonder if there is any possibility you and your h and your d could come to the States for one of the weeklong programs that help get everyone on the same page and get the ball rolling in the proper direction.  A onumber of forum members have said it was super helpful in educating the husband / dad, and was the turning point in their battle with ED.  I know that would be expensive, but in your shoes, I would move heaven and earth to get my family to UCSD or the one in Ohio for the weeklong program.

You know what your d needs, but your parental authority is eroding as the clock keeps tick tick ticking toward that magic age when your d will be considered an adult for mental heath treatment.  

Wishing you all the best. xx

-Torie

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HateEDwithApassion

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Reply with quote  #29 
I totally agree with Torie. We recently attended something similar and it was a turning point for my H. it was no longer me telling him about the illness, but some of the world's most respected doctors telling him flat out that this disease is not a choice. I think dads are so logical and performance driven, they just naturally think - try harder. At least my H did.

There wasn't a question the doctors couldn't answer and it was evidence based and all made sense. It was interesting to see how most of the dads had the same questions/same phrases/same reactions. So even if just one asked a question, you know the others were thinking the same thoughts.

MJKZ is also right. If your H isn't supportive, can he just let you do your thing and be a loving dad? That's tough - it puts a lot on you, but as long as he's not causing conflicts or undermining what you are doing, that may be the best you can ask for.

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19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
melstevUK

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Reply with quote  #30 
hopefulheart,

I am really sorry for what you are going through - but I assume you are in England and I am really surprised to hear of the difficulties your are having, particularly as you seem to have been under the Maudsley (SLaM in the UK?)

Who is your d under now?  Which service?  The main message that needs to get through is the issue of weight and how your d has gone backwards and is far less after all these years.

I find it extraordinary that any clinicians can find acceptable that a young person 4 years on weighs so much less than at the earlier age.  I am gobsmacked beyond belief, which is why I am asking who your d is under at the moment.

No wonder you are ranting.  It is unacceptable - nothing else for it.  We are behind you.

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Believe you can and you're halfway there.
Theodore Roosevelt.
hopefulheart

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Reply with quote  #31 
Hello all,

Firstly, thank you to everyone who has answered my questions and made such helpful suggestions.
Donotdespair, I really hope that your son has been moving in the right direction these past 2 weeks. You sound like an amazing mum who will do all you can to help him through this and your post struck a chord with me because it was all about your uncertainty of pushing for further weight gain. I didn't mean to hijack your thread! How is the weight going?
Having lurked on here for help for over 2 years now, I have learned so much and Torie's statement that 'No help is better than bad help' is so true. I've learned that the hard way, as we are still trying to undo over a year's worth of bad help. The other thing I keep reminding myself is that NOTHING will begin to improve until true WR has occurred; whatever that may be for your loved one. BMI means nothing to me as my daughter is 'Atypical' and was never considered to be at a low weight when measured against 'the norm'. But I knew. I knew she was very ill and have spent 2 years since, trying to convince even the 'good' therapists.
Donotdespair, learn to trust your instincts as a mum. It will save your son's life. And I, like Bev Mattock's article so succinctly said, am not prepared to settle for 'OK' recovery.

We are in Scotland. Since asking for all your advice, I have phoned the therapist and requested that at our next meeting we put whatever decisions are made in writing; a contract that makes it clear to my girl that we will not negotiate over her health and one that helps support the fact that we are ultimately the decision makers, not the therapists, who are there to support us in whatever way they can. I want her to know that we will discuss how she is doing and make any changes necessary to the agreement if we feel her health is being compromised. And that we don't have to wait for our next therapy session to do that!!

I've had a long chat with hubby about not engaging with the ED voice, which I think we both do at times without realising until it's too late. He understands that food must come first, then social things can happen. And if the ED makes it too hard for her to have the food, then it's not her fault but it's not our fault either. It's Anorexia's fault. He accepts she is underweight and has agreed to let me take the lead in making decisions and initiating discussions with our daughter about targets to aim towards, contracts etc. He will back me. I know he loves his girl, but he is a very black and white thinker; not good at reverse psychology and 'thinking' too much about things. He admits this himself and I've told him that's ok, he still has a role to play and he is better dealing with pair meal things that may not be my strength. I hope we can be there for each other and make it through this. I see how it has changed us and I hate it.

I've put on my big girl pants! The exhaustion of this I think had stripped me of all my self confidence in being able to handle this; I've been paralysed with fear of ED's reactions (because they have been sooo violent) and I've been too accepting of the behaviours being around. They're NOT normal, my daughter would NOT freak at the things she does if she was well. She isn't strong enough to fight it on her own at the moment so we need to help her again. We done it before and I can do it again. I hope I can listen to myself and remind myself of this later when we are in the trenches again!

I've rambled, but thank you all for your words which have boosted my determination, and to donotdespair - never give up! Your instincts are right, get the weight on your son, I will do the same with my daughter; that way we are giving them the best chance to fight this hellish monster of an illness. Brick wall....brick wall....food is medicine.....❤️

donotdespair

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Reply with quote  #32 
Hopefulheart I am so happy to share this thread with you. It helps me so much to hear from other parents sharing the struggle. As much as I tell my family and friends that this journey is so hard, I know they don't truly understand. Everyone posting here knows how huge this journey is and we have a connection even when we are on opposite sides of the worked.
We are pushing on with weight gain. That is evidenced in my own waistline after eating the calorie laden dinners I'm making. My husband heard someone say he'd heard a rumour we are pregnant and I felt devastated as I know my tummy has become big these last couple of months from eating with my son. It has helped him if I eat the same as him, but just recently I've told him that it is ok if I eat less than you as you are a growing teenage boy. I feel that my weight gain is worth it for how much it has helped my son, but I feel awful about my own weight now as I have always been slender. :-( I don't say anything to my son of course.
Well done for taking charge hopefulheart, you are being brave and doing the right thing for you girl. You are a great Mum. [thumb][thumb]
tina72

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Reply with quote  #33 
Hi there,
#hopefulatheart: Keep on going. You have done such a great job up to now and you will see the effects soon. Try to make her gain weight and make her eat everything she ate before ED. A great variety and a good target weight is the best relapse protection. I didn´t believe it myself but in our case just one kg more changed a lot in mood and behaviour. It is true: there will be a weight were the brain starts to repair and you get her back. In our case it took four months after WR to feel a huge change.
#donotdespair: Don´t feel awful about your own weight at the moment. You will get back to your normal weight when refeeding gets less intense. If it helps him that you eat the same, do it. We all gained weight I suppose [smile]. I gained 5 kg while my d gained 10 and it was worth it. And I´m sure your husband likes it when you are not so slender...[wink] That is the price we pay and it is totally worth it.
Tina72
donotdespair

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Reply with quote  #34 
We faced EDs biggest nightmare today - a buffet! About 2 months ago we took him to one and wished we hadn't as it was a painful experience. It was for an extended family member's birthday and we went to a place my son enjoyed prior to AN. We'd prepped him a few days before and he was of course anxious about it. I decided to just get him to eat an amount that I was happy with, but pick foods that wouldn't be too overwhelming for him. I decided to try and let him walk around with me while I was choosing (but planned to send him back if it was too hard). I got to prawns in their shells and he said "yuck I hate those", so then I went to the crab mix in a white sauce next to it and said "do you like this?". He replied "I won't comment on those ones". So I put some on the plate and he didn't complain. This continued around the buffet with him being vocally opposed to some things, but saying he "wouldn't comment" on others, even things that weren't low calorie like a satay chicken dish. It was like it was his secret code of telling me he wanted it, without ED punishing him for choosing it. He needed encouragement to eat back at the table, but he didn't put up too much fuss. He even had a mini sweet tart at the end (which took a LOT more time and encouragement). I feel like it was a win. 
I have also invented my own 500 calorie 'banana muslei bar' that I bake that he has been happy to eat everyday for a snack with a piece of fruit. He is comfortable to eat it as it is a healthy looking brown bar with oats on the top. My husband was complaining that I wouldn't give him any of the yummy muslei bar until I told him its the equivalent of eating 2 chocolate Mars bars! 
It was nice to have a good day today when it had the potential to go very sour.
EC_Mom

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Reply with quote  #35 
Good for you for recognizing the "code"! My d had code too, it was so weird. It's like they have to circumvent this weird surveillance system. 'No comment" is a new one for me though, it's almost funny.

Also great with the banana bars. Post the recipe, others could use it? Especially if it looks "healthy".

For other parents who read this, and who might be contemplating a buffet and whose kids are not as far along as yours, or not able to use "code", I would suggest they might be better off not being faced with all those choices. Magic plate works at buffets and restaurants. You order what you know the kid would normally like, s/he eats it. That said, my kid couldn't eat in public for a very long time. 

You are doing so well!! Wonderful!
donotdespair

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Reply with quote  #36 
Good point EC_Mom. Looking back I probably should have gone for magic plate at the buffet as his anorexia is still strong. We did do magic plate at our last buffet experience 2 months earlier and even though it was so difficult and took over the whole meal, he did end up eating it. I guess it is hard to see 'progress' when you are in the middle of it all so it was good to see it was a bit easier. He also isn't obsessed with cooking anymore which is a good sign. He still struggles every meal and snack though and complains about what I give him.
I'm going to bake the muslei bars for the 3rd time this afternoon and if they work out again and not fall apart I'll post the recipe. 
donotdespair

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Reply with quote  #37 
We are 6 months into refeeding. Everyday is still a challenge (he was yelling at me this morning that his cup of juice was bigger than yesterday). Today I asked him - If 6 months ago the difficulty of anorexia was 100% what is it now? He said 50%. He is now almost 5kg above target weight and our T is asking us to stop pushing for weight gain as his weight may feed the anorexia. T is also pushing for more independence as he is now supposedly in stage 2. Hubby and I think it may be time for a bit of a break from T, he’s not ready for more independence yet. I think our goal now is pushing for more gain and stretching him with challenges. I am glad I have been able to get good help and information from here to help. Thank you to those who maintain the site and those who are further along the journey who reply to posts.
EC_Mom

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Reply with quote  #38 
If he's arguing about the size of a juice, he is NOT ready for stage two and it's NOT the time to worry about weight gain encouraging anorexia. He already has the darned anorexia! He is having trouble just accepting what you give him! Giving him more autonomy is premature if he can't even easily eat what you give him.

Good for you for knowing this, and ignoring the advice of the T. Who is not the authority, just a consultant whom you may disregard as you see fit! And yes, you are seeing fit to disregard this wrongheaded advice!!

BTW great job on all the weight gain on and on things being 50% easier! Of course 50% easier than hell is still difficult, but it's nonetheless wonderful and you deserve kudos!!
Torie

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Reply with quote  #39 
Stage 2 is a really slow process.  As a first step, you could try letting him pour his own milk / juice.  If he doesn't pour enough, "That's okay, we can try again tomorrow."  If he still can't pour enough after 3 tries (3 days), "That's okay - you're not ready yet.  We'll try again later."

Sounds like the t might not be aware of the needed baby step approach.

You're doing great!!!  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Reply with quote  #40 
Hi,
I found it the most difficult thing to see when they get into phase 2 and we too did start it too early. The T said it was o.k. but looking back now I would say that now she is in phase 2 (after 4 months WR). So if there are still discussions about "too much" and restricting, no way that is phase 2.
How can weight gain feed AN? Normally AN gets more silent over the target weight, I thought. We experienced that there is a magic weight when it really gets better (knocking on wood). And it was above target weight. I suppose you are right thinking about some T pause...
50% less AN sounds good. See the positiv things that happend. Yes, there is some way to go. But you did a really great job up to now. Go on and trust your but. You cannot start phase 2 too late, but you can start it too early.
Tina72
tina72

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Reply with quote  #41 
Hi,
I found it the most difficult thing to see when they get into phase 2 and we too did start it too early. The T said it was o.k. but looking back now I would say that now she is in phase 2 (after 4 months WR). So if there are still discussions about "too much" and restricting, no way that is phase 2.
How can weight gain feed AN? Normally AN gets more silent over the target weight, I thought. We experienced that there is a magic weight when it really gets better (knocking on wood). And it was above target weight. I suppose you are right thinking about some T pause...
50% less AN sounds good. See the positiv things that happend. Yes, there is some way to go. But you did a really great job up to now. Go on and trust your but. You cannot start phase 2 too late, but you can start it too early.
Tina72
donotdespair

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Reply with quote  #42 
Thank you so much everyone for encouraging us to push higher with our son's weight. He is currently 5.5kg over 'target weight' and we have noticed things are improving for him! Yay! He said the illness is about at 40% difficulty compared with 6 months ago. I have always held my breath whenever I put that plate of food in front of him as there is always a negative comment/complaint, but lately there are not many comments, he just eats. He even managed to have fish and chips with some friends. He has been eating my high calorie homemade muesli bars and a piece of fruit at school at morning tea without us there and we know he is having it due to his weight gain. We have been challenging all those little anorexic behaviours like smearing and they are getting much less. We still have a way to go yet (baby steps) but am so grateful for the help received here otherwise I'm sure if we had remained at 'target weight' he wouldn't be thinking this well. 
He hasn't grown in height hardly at all this year so I am expecting his higher weight to trigger a massive growth spurt so I'll have to keep up with the calories to keep up with that.
Thank you thank you for your support and knowledge that I wasn't getting from anywhere else :-)
sk8r31

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Reply with quote  #43 
Really fantastic the progress you have made in the past 6 months!  Hero parenting at its finest.

Sounds like you have the confidence to move forward without T who may be a detriment at this point.  Continue to challenge 'fear foods' and to tackle social eating challenges as you have...

Really it is so very encouraging to others how you are able to help your son move forward on his journey.

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
tina72

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Reply with quote  #44 
Hi donotdespair,
that sounds so good! Thank you for the update, it is sending hope to all of us who are still in the dark days.
Keep on going, fear food, social contacts, it all will make it better. No better way than eating fish and chips with some hungry boys...[wink]
Great that he managed some snack without you! That is progress! And that the ED behaviour gets less.
ED: 0
Donotdespair:1
Tina72
Torie

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Reply with quote  #45 
Oh, yay!! I love to hear about progress like this.  It's kind of funny how we all (?) come here thinking "my ED-kid needs to gain up to such and such a weight" and then end up being part of the chorus encouraging more.  Because it works.

THanks so much for the happy report.  

Keep up the good work. xx

-Torie

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

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Reply with quote  #46 
2 steps forward, one step back. I am only now ready to say we are in stage 2. 

I'm sorry but I haven't been contributing usefully to the threads even though I have been reading them off and on. I wanted to but haven't felt like I could. Sometimes even reading about the stories of those who are newly dealing with this vicious illness brings up raw emotions in me from the trauma of the early months fighting this demon head on. I saw my son's school photo from early in 2017 and wanted to cry about how sick he was and I had no idea how much at the time. He was so skinny, pale and had dark circles under his eyes. My poor boy.

He is now comfortably maintaining 7kg over being 'weight restored' and he is slowly growing a bit in height at last after a LONG TIME of no growth, so we aren't backing off. Friends are commenting how healthy he looks. He still struggles every day with food but ED is weakening. He will be missing out on a school camp coming up as we don't think he's ready for that yet.

He is able to eat food that I pack him when he visits a friend's house and we feel comfortable to let him eat lunch by himself when school goes back.
We are slowly getting him involved with making his breakfast with our help however he struggles with the handover and just wants me to make it.
For the first time since this nightmare began he said that he liked a type of flavoured cracker and that meatball bolognaise is his favourite dinner! This is huge as even a month ago I'd ask him what he likes to eat and he doesn't like eating anything and that he may as well eat through a tube into his stomach.
On Christmas day he had a meltdown as we were requiring to have dessert 3 nights in a row, but he did it (eventually) and wrote us an apology letter for making a fuss on Christmas.
I realised yesterday that almost all of his 'anorexic behaviours' are gone- wanting to eat with a teaspoon, smearing, tiny mouthfuls, breaking muesli bars into tiny pieces and dropping bits on the floor. Anytime we saw him do any of these things we said "ABCD" which stands for 'anorexic behaviours can die'. He hated it everytime we said it and rolled his eyes.

I'm still putting icecream and thickened cream in his nightly smoothies, baking my 570 calorie muslei bars (in high calorie snacks thread), adding lots of cream to his Greek yoghurt and giving him lots of cheese, nuts, mayo, muesli and extra oil in his dinner (and fry everything I can). Tonight I made 2 types of mashed potato while he wasn't looking, mine mashed with milk, his mashed with heavy cream and ghee. His porridge is made on heavy cream and a small bit of canola oil. I'm forever looking for little ways to add the extra calories while he's not around. 

I am hoping so much that he GROWS taller and that he hasn't been permanently stunted in height. His friends are the height of men. He is 13 and a half. I'll get him seen by the paediatrician next month and I'll ask if he needs anything to help his growth. I was an underfed skinny 13 year old runt back in the day and was the last to grow in my class, I'm hoping the same will be for him. Anyone have any knowledge about stunted height from anorexia? 

To those in the early stages of fighting this, keep going! Every extra calorie you can get in there counts. There is light at the end of the tunnel, I feel like we are getting our life back. 

Foodsupport_AUS

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Reply with quote  #47 
Fantastic to hear that your son is doing so well. Keep up the great work. Most pele on here have found some catch up growth once their child gets back to a higher weight. We had some too. It sounds like you family are later bloomers so he should have plenty of growth left.
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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  #48 
Hi donotdespair,
thanks a lot for that wonderful update. It is so good to hear that your son is better now.
Please be careful with growth hormons, they should be used only when really needed because they have lots of bad side effects.
The paediatrician can tell you how much he will grow by roentgening his hand bones. That will give you some number.
Some boys in my d ´s class didn´t grow for a long time and were the tiniest all the time. But all of them did a big jump just at 16-18 and now they are all of normal high. So if you are not a family of dwarfs (like we are [wink]) I would not think too much about that. Anorexia can stopp growing for some time as long as they are malnurished but at the age of your son I think there is a good chance that he will have no late follows like that.
Tina72
Torie

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Reply with quote  #49 
Thanks so much for the happy post!  So glad to read of the progress. xx

-Torie

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

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Reply with quote  #50 
hi
i have not been on the forum for ages to actually type, but keep up to speed on all the users stories.
two years in .... AN my daughter is nearly sixteen and still not weight restored she has not started her menstrual cycle. in synopsis we were now alone as CAMHS have no more to offer but thankfully we are united at home. while she will eat certain foodtypes her weight remains 40 kilos and we blind weigh weekly. no purging by the way.
she is good at school and is socialable with her peers no more extreme outbursts of emotion but still very headstrong in her thoughts around times of food and haveing to go walking daily despite dreadful weather.
i empathise with everyone but we not there yet, been in hospital for stint but lost the weight gained from that admission.
i have added oils etc but some of the choices are too low in calories but she knows all the calories in everything by now and if get something different ,,gets agitated with us. other daughter doing major state exam and trying to keep conflict to a minimum.
one foot in front of other no magic wand but any other tips please.
Gp at end of the week again worried re bones ??

A.

 
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