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donotdespair

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Hi everyone, My 13 year old son was diagnosed with anorexia and hospitalised for 3 weeks with NG feeding 4 months ago. The fight with this vicious ED demon has been exhausting, but I can now look back and see some progress. I have learned much from this forum that has been so practical (thankyou) that I didn't get from our community FBT therapist who we see weekly. For example from one thread I got the idea of making an incentive chart to eat within the 30 minutes and now we have had 2 weeks of eating everything within half an hour (we we often sitting around for hours of coaxing before this). I also prompted me to consider higher calorie, dense food and I've now discovered ghee, macadamia butter, pesto, cream and almond meal to boost meals/snacks. I've also had to buy myself new pants :-(

After a record breaking weekly gain a fortnight ago, according to the therapist he is now 'weight restored' so now he can excercise and just maintain the weight, but in his mind the grip of ED is still very strong. Everything I've educated myself with from what I've managed to dig up on this site makes me feel like we need to keep pushing to a higher weight. I think his height was stunted so though his BMI looks ok, I think he would have been taller if not for ED. Just going by the height and weight charts linked on this site, he is at 25th percentile for height and 10th percentile for weight, but before the eating disorder I would say he has been average or only a bit below. I tried to bring this up with the therapist and even emailed her various links but she didn't seem to get it, and now just says for me to talk to the community paediatrician about it in 3 weeks time.

My gut says to ignore the therapist and push to a higher weight (at least a few more kg), however my son has heard her now for 2 weeks say we are now maintaining, which means if I push a lot higher then when he gets weighed at therapy he'll have a meltdown. I feel like if I try to explain to her or email more things it will get nowhere. 

Do you think I should be pushing higher? If so then how do I deal with the weekly therapist (free service through govt) as I have tried to state my case already? If there are any threads about this or good links I'd love to see them.
mjkz

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Quote:
Do you think I should be pushing higher? If so then how do I deal with the weekly therapist (free service through govt) as I have tried to state my case already? If there are any threads about this or good links I'd love to see them.


Go with your gut.  Our kids need often times to be higher than pre ed weight and need higher than normal calories for 6-8 months after reaching weight restoration.  I would push for the higher weight and tell the therapist that is what you are going to do.  I would simply state if she can't support that, then talking about weight, maintaining, etc. is off limits.  She can work with him on many other things like DBT skills, etc.  Also do blind weigh ins rather than letting him see his weight.  Really helps deemphasize weight and manage the meltdowns.

Congrats on getting so far so quickly!!!
Foodsupport_AUS

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Should you be pushing for more gain when your son is less than his previous historical weight and height percentiles? Absolutely. 

This is one of those things that can be so destructive for a kid to hear from the therapist/clinician. Unfortunately it means that you have to weather the storm. 

Laura Collins did a fantastic podcast on this very topic, released today: http://www.circummensam.com/episode-21-state-not-weight-with-dr-rebecka-peebles.html   and for written information looking at this blog https://www.kartiniclinic.com/blog/post/setting-goal-weights/

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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.
Foodsupport_AUS

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Reply with quote  #4 
Should you be pushing for more gain when your son is less than his previous historical weight and height percentiles? Absolutely. 

This is one of those things that can be so destructive for a kid to hear from the therapist/clinician. Unfortunately it means that you have to weather the storm. 

Laura Collins did a fantastic podcast on this very topic, released today: http://www.circummensam.com/episode-21-state-not-weight-with-dr-rebecka-peebles.html   and for written information looking at this blog https://www.kartiniclinic.com/blog/post/setting-goal-weights/

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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.
toothfairy

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Reply with quote  #5 
Hi there,
I am also a boys mum, my son fell ill with anorexia at 13.
It is extremely concerning that he is allowed exercise, and told to "
Maintain" ...a 13 year old boy with anorexia! Uugghhh.
To cut a very long story short, I had to fire our anorexia specialist dietitian & " go rogue". I kept his T & family T as they completely agreed with me & I got his weight right up.

She was keeping my son ill ,
with her too low target weight & he would never have recovered if I had not removed my son from seeing her.
My son was given a target bmi of 19 & was on the verge of relapse daily with this silly target.
I had to get him to bmi 24/25 to get him where he is now.
He is in solid recovery. My son is just 16 & still needs at least 4000 cals a day to keep him in recovery.
Lovely Irish butter & cream are my very best friends.

This video is an hour long but it explains a multitude ....well worth a look


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meadow

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Reply with quote  #6 
Hi, I agree that if he doesn't seem to be following the weight trajectory from before ED, I would definitely be pushing for more. My daughter (8)'s weight for height was 105 before we started seeing an improvement in her mental state. Pre-ED she was always very petite and although I never calculated her wfh (or even weighed her), my guess is it was less than 100.

And yes, you're right to be thinking about height gain too. Our D didn't grow for around 6m and has suddenly shot up (bringing her wfh down, of course).

Just a warning, our daughter got quite socially anxious at the point when she started looking bigger, and would avoid going out or hide behind me, covering her tummy. This phase didn't last long, thankfully, but it was difficult to watch.

Good luck and brilliant progress so far x
meadow

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Reply with quote  #7 
Ps at 13 he's still got lots of growth to do so he shouldn't be 'maintaining' anyway ......

Mamaroo

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Reply with quote  #8 
Hi Donotdespair, welcome to this forum, I'm sure you will find plenty of good advice here [smile]. I can only add to what the others have said and getting his weight up. My D was a big baby and at her lowest weight was just under the 50th percentile, so it took a lot of convincing before the GP referred her. In addition, during treatment I had to fight to get the doctors to accept a higher weight. The best advice I can give you is to keep on feeding until his weight is back to normal for him. My d is now 6 months on her correct weight curve and the brain healing has only just started.

Lastly I just want to say I understand about the new pants. I also had to buy new pants and blouses - it's part of the process.
Best wishes!


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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.
Torie

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Reply with quote  #9 
Greetings from another mom who had to ignore the professionals in order to get her kid back to a healthy weight and out of the grip of ED.  Ugh.  Sucks so much when they make our already awful job so much harder by telling our kids they don't need to gain more weight when they most definitely do.

Quote:
Originally Posted by donotdespair
I tried to bring this up with the therapist and even emailed her various links but she didn't seem to get it, and now just says for me to talk to the community paediatrician about it in 3 weeks time.


A word to the wise on this:  Please try to talk to the pediatrician privately, before the appointment.  And listen carefully to their attitude.  I spoke privately with my d's ped and to make sure she understood my opinion that my d needed to weigh at least x pounds.  She said she preferred a slightly lower number (1 pound less).  I told her I could live with that even though I was really sure my d would do better at the full x pounds.

When we got to the appointment, I went in with my d and after a bit, the ped sent me out of the room.  In my absence, she told my d she didn't need to gain ANY weight and that it would actually be OK if she lost a little.  That's what my d claimed - I found this hard to believe from the pediatric practice I had known and trusted for 20 years.  So I called and asked the doc and sure enough, she really had said that to my d.

Lesson learned: Bad help is worse than no help at all.  

In the end, I had to find a true ED expert to take my d to to undo the damage.  Not sure if that is an option in your neck of the woods or not.  As it turned out, the x pounds I said my d needed was still not enough and she had to gain more than that.

Good luck.  Please keep us posted. xx

-Torie

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donotdespair

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Reply with quote  #10 
Thank you everyone for taking the time to respond, it has really helped me have clarity and courage and also helped me in getting my husband on board with this. I am currently writing another email to therapist with more links and explanation and plan a follow up phone call to assert that we WILL be aiming for a higher weight, that we insist that future weighing is blind and quietly communicated to us (and tell his that this is because we are not focusing on the 'number' anymore but that we need to monitor him for normal growth), and that there will be no more talk of 'maintaining' but instead using language like 'healthy growth' and 'heading back to normality'. Some damage has already been done with unhelpful comments about maintaining when we were doing so well, so we need to take charge. I hope it leads to a positive outcome. 
A big thank you again, I have had benefit from every reply given.
Kali

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Reply with quote  #11 
Hi donotdespair, 

That sounds like a great plan. Of course your son needs to gain more weight as he is 13 and still growing and it sounds as though you will can handle this situation. Blind weighing also sounds like a good idea at this point to help keep his anxiety down.

Kali

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Torie

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Reply with quote  #12 
Sounds good!  So glad to hear your h is more on board, too.

Just one suggestion: Avoid using the word "healthy" (as in "healthy weight").  Their hijacked brains tend to hear this as "fat."  "Normal" (as you said) is a great word.  They all want to be normal.

You're doing great.  Keep going. xx

-Torie

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toothfairy

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Reply with quote  #13 
Hi there,
It took me a long time to undo the damage, I mean about a year!
I believe my son should have been brought immediately back to his original growth curve initally & had that been done I believe our journey to recovery would have been much shorter.
I am still in SHOCK that my then 14 year old was told he was fully grown & could maintain at the weight & bmi 19, in fact he slipped back to 18.8 & he was told that was still " perfect".
My son was never a small child, just average, & we were never, ever asked about his pre illness weight/height.

The meal plan he was given was far too low for my son, teen boys in recovery normally need a HUGE amount of cals to recover.
I had to beg the dietitian to add a second snack to the plan ??????
If Only I had known then what I know now!

The weighing was a huge issue as well, she talked numbers to him, which was also feeding into the illness, as he was playing it by the numbers, so it was the perfect storm.

His first real step into good recovery was when I got rid of the anorexia specialist dietitian and her restrictions , & fed him
Like a farmer well past minimum bmi's & into the strong recovery that my son is enjoying now, just like a normal teen.

Sadly this story is very common, its a common issue especially with clinicians that are not keeping up to date with modern research.

My son now eats very well & enjoys it, he asks for food, tells me he " liked " that, looks forward to his dinner "
Hi mum, whats for dinner"
..,,then "
Oh great, I love that"
He is fully able to eat properly out with pals, on a camp etc.....its just amazing the difference in him at a higher weight, he is a happy fully functional young man.
That is my experience,
Best wishes

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donotdespair

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Thank you Torie and Toothfairy, great advice and encouragement. :-)
toothfairy

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Hi again, 
Just a few more things spring to mind.

My son has grown 3 inches since and towers over me, his shoe size went up from an  EU 9 to a 12! 

The rest of the team, the family T and my sons psychologist, fully agreed with me about the weight and were also shocked that the dietitian was keeping him at a bmi of 19 when he could not even drink a glass of orange.

When we tried to get the dietitian on board ,she wasn't  open to my son being higher, and so the rest of the team agreed we would go alone without her, and get him into proper recovery. This worked very well as I still had others on the same page.

I have subsequently complained about this, but believe it or not this is not regulated!
Have a listen to this and prepare to  be shocked..

http://tabithafarrar.com/2017/07/going-sane-exposing-malpractice-mental-health-industry/

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Food is the medicine. Recovery is possible.
donotdespair

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Reply with quote  #16 

UPDATE : Pleased to
T say therapist is supportive of our wishes to aim for higher weight and he is now 3.2kg above target weight. We have decided to not tell our son we are aiming higher and we are telling him we are just feeding him the same as a normal teenage boy. He still protests about what I serve him and the size but he end up having it anyway almost always within 30min.
Therapist is also following our wishes to blind weigh and we get emailed his weight, this has made the sessions less stressful and taken the focus off a number.
T has now pushed for him to start becoming independent and have his morning tea snack at school with his friends which he has just started. He is a very honest fellow but I hope he is truly eating his snack. He said his friends eat a lot faster than him so I suggested he could speed up, so I noticed him trying to gobble down his toast faster at breakfast as he can see eating faster is normal. I am hopeful but the scales will let us know if he is eating I suppose.
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Reply with quote  #17 
Hi, that's great news, well done!!!

I agree it's better to blind weigh. I always called the next day to get her weight, so she though I didn't know, otherwise she would nagged me relentlessly. My d eats her school snacks with friends. I was also sceptical at first, but she so dearly wanted to appear normal with her friends, so she ate with them. The scales did confirm the meals went in. I'm sure it would be the same for your son.

Sending you lots of best wishes

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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.
donotdespair

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Reply with quote  #18 
Thanks for that Mamaroo, I was hesitant about the snack eaten independently, glad to hear it went well for your daughter.
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Reply with quote  #19 
I’m so happy to hear how you kicked ass and handled this!

I just wanted to say this : I fed a girl who grew nearly 9 inches, went through full puberty, and OVER DOUBLED her body weight.

Your son in going to grow like a weed and go through full puberty. Both will require you to feed high calories and fats for many years. Do NOT back off and do NOT give him too much independence too fast.

Keep going... food is medicine!
Trust your gut mama!

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hopefulheart

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I read all of these comments with great interest as state not weight haunts me on a daily basis.
My daughter is at the lowest weight she has been since we began this process. We have been at it for 2 years. She gained 8kg within the first 3 months of treatment. I felt empowered. We were getting there. But then ED kicked in and complained about milkshakes, a mum who controlled everything etc. And they all fell for it.
I have fought with numerous therapists, a consultant at the Maudsley, 2 clinical psychiatrists and 'fired' the nurse therapist who diagnosed my girl (can she do that??!!!).
I have read enough on this message board from hero parents, about this illness to know that my 16year old daughter who is 5ft 8 and 121lb, should be soooo much more. At aged 12 she was 69 kg. She is now 54kg. And 4 years older. She was never overweight for her height, was very sporty and growing normally. Now all I'm told is that she only needs a few kilos more and that it's more important to tackle the behaviours. She is entrenched in her thinking and I have gone from refeeding 2 years ago and making good progress, to being told to back off and stop being so controlling. I was so emotionally exhausted from the refeeding and subsequent violence/screaming/running away etc that felt I should trust the professionals.
It was the worst decision I ever made and it has LITERALLY driven me mad. I cry every day, I'm on anti depressants, my husband and I barely speak without arguing as he feels we should should trust our new therapists who are good (but who also don't see the need to get back anywhere close to 69kg). I am on my own. I am the only one who seems to believe what I do. I feel disempowered, exhausted, emotionally and physically weak. When challenged with behaviours around eating my daughter's rage is explosive. Yesterday she upturned our kitchen table. She attacks me. I know it is the anorexia torturing her but I feel like I am failing her on a daily basis. Everyone's advice goes against my gut feeling. Feed, feed and feed again. She is STILL terrified of water and fluids...2 years on!!!
How do I stop the triangulation that goes on at home? My daughter tries and success to play her dad and I off against each other all the time. I am firm and refuse to engage with ED talk, whereas he is more easily drawn into it. I feel like we are enabling the ED and giving it so much strength. My instincts know that I need to feed my daughter. Bad advice in the past has stuck and I'm left trying to undo the damage. She isn't '' ill enough' to go into hospital, I want to care for her here at home.... but how long do I keep fighting the system? I feel so utterly lost and unsure of myself because it's only me who seems to know what my daughter needs.

I'm tired, I'm ranting...apologies. I'll sleep and tomorrow will be a new day. I hate what this has done to my family and I'm done in. The parents and heroes on this board have been a lifeline to me and I truly believe my daughter would be dead by now if it weren't for the experiences of strangers that I have read about on here. You helped me know what I needed to do.
I need to sleep. I need to stop checking her in her bed to see that she is sleeping and not hurting herself. My mind is let rally torturing me with the 'what ifs'. How do I get peace enough to rest? My prayers feel empty tonight but I still pray for all of your loved ones; that they will find their way to recovery and freedom from this hell.
X



Foodsupport_AUS

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Reply with quote  #21 
hopefulheart welcome to the forum. So sorry that you have had to battle for two years with a team that does not support full weight restoration. Even more worrying is the fact that her team believes she is close to weight restoration with a BMI of just just over 18. It is not at all surprising that she is still so ill. 

How can we help to empower you? How can we help get your husband on board? I would hope that if both of you can get on the same team and stop the triangulation you will be able to get to a place where she is able to be weight restored, and give her a chance at getting to a place of recovery. 

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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.
donotdespair

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Reply with quote  #22 
Hopefulheart I cried when I read about your struggle and how it has affected your whole family. I have said a prayer for you right now for hope and strength in this awful vicious battle. You are a good mum researching this forum and learning from others to help your daughter. I wish there was better advice from the experts for parents in our shoes. I hope your husband can come to learn what you have discovered so you can face this together. <3
donotdespair

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Reply with quote  #23 
If the cure for anorexia is MORE and MORE FOOD until they are better why don't all the therapists know about this? With the overwhelming anecdotal evidence on this site of completely healed kids who were fed much higher than target weights, why is this evidence not widely known in the medical profession? Other than the great links posted earlier in this thread and some information on the FEAST website, there is very little information out there about this which I discovered when formulating an email to our therapist and was trying to find credible links. Is anyone doing clinical research about this? Is there anyone pushing for this to become known in the medical profession and in FBT circles or is DR Peebles from the video above the lone voice in the medical wilderness crying out the truth. I just feel sad for all the families and children out there who are not given this important knowledge and they are stuck with this illness for longer than they need to. 
toothfairy

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Reply with quote  #24 
Have you listened to this
http://tabithafarrar.com/2017/07/going-sane-exposing-malpractice-mental-health-industry/

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BattyMatty_UK

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Reply with quote  #25 
I feel so very sad and angry whenever I hear about therapists claiming that our children have arrived at the finish line when it's so very obvious to us that they haven't. Have you read this blog post I wrote on the subject last week? https://anorexiaboyrecovery.blogspot.co.uk/2017/10/will-my-son-always-be-stuck-standing.html
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