User’s Guide | Rules | Contact a Moderator | Registration or Login Problems? | Eating Disorders Learning Center | F.E.A.S.T.



Custom Search of F.E.A.S.T. and Forum Content:
Register Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 2      1   2   Next
nicolas

Caregiver
Registered:
Posts: 8
Reply with quote  #1 
Hi - I posted on here a couple of months ago, when I was concerned about my son not gaining weight during refeeding. The advice I got made a huge difference - we increased his calorie intake to 2500-3000 and he is now nearly weight restored. On many fronts, things are better in that he is now back at school and seeing friends out of school. There are periods of time when we feel like we 'have him back'. However, over the course of the past couple of weeks he is finding the meal times and snacks more and more distressing. He knows his body is changing and he is becoming very anxious that everything he eats will make him fat.  My understanding, from reading this forum and other information about FBT, was that as weight is restored, the anxious thoughts and distress become weaker. This doesn't seem to be happening for my son. I'd be grateful to hear from anyone who can help me to understand what is happening and work out how to respond. At the moment we keep reassuring him that he won't be fat and that this is what he needs to eat to get better etc. etc. but it doesn't seem to be helping.  Thank you. 
tammy

Caregiver
Registered:
Posts: 23
Reply with quote  #2 
Hi Nicolas. We too experienced a set back as our son was near to WR. He got a lot more scared and the temper tantrums were worse. We have gotten over this stage now and he is a lot more content again. I think this is a common stage to go through and is called extinction burst. You can search it in this forum. He now no longer seems to be worried about his weight. Still working through fear foods but seems less concerned about how he looks and increases in weight don't phase him anymore. Hold this helps. Well done on your progress so far.
Tammy
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 2,005
Reply with quote  #3 
Hi nicolas,
Congratulations, you have made huge progress.
Firstly there is very often a huge surge of anxiety as the sufferer approaches WR, it is known as " Extinction Burst".
I have posted a link below, but if you type in "extinction burst" in the search bar, it should bring up lots of old threads on it.

The other thing is, I advise you, Do not talk about food,fat,calories,size,weight or shape.....This literally feeds in to the anorexia.Distract, Distract,Distract, change the subject, do not engage. Your son is very young, but in our case my S was age 13/14 I actually said " I do not engage with anorexia", but that may be too much for a 10 year old.  Maybe mmm hhmmm, it must be hard, now look at the dog playing with the ball etc... I definitely would not say to him he wont be fat, it is colluding with the illness. I would say, Food is your medicine, here is your meal , I know what you need and you need to eat this, ....and do not negotiate.

Finally, this takes a long time, when the patient becomes WR , and is gaining and the brain is healing , then the sufferer generally becomes much less anxious over time, it is not a quick fix, but as the healing takes place the sufferer becomes much more rational and manageable. This is a very long road, it is a marathon and not a sprint.
Best wishes, and I hope this helps.

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 2,005
Reply with quote  #4 
http://www.laurassoapbox.net/2010/09/what-if-feeling-fat-could-be-triggered.html
__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Torie

Avatar / Picture

Caregiver
Registered:
Posts: 4,728
Reply with quote  #5 
Quote:
Originally Posted by toothfairy
I definitely would not say to him he wont be fat, it is colluding with the illness.


Agree!


Quote:
Originally Posted by toothfairy
I would say, Food is your medicine.


Hmmm ... Although that saying is very popular here on the forum, I think it depends.  My d, like many others, didn't think she was ill, didn't think she deserved to be well, and didn't view taking medicine as an enjoyable experience.  "Food is his/her medicine" is a great message for caregivers, but not always for the patient. 

Just my opinion.  xx

-Torie

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

Caregiver
Registered:
Posts: 2,645
Reply with quote  #6 
NIcolas,

Given that your s is so young, his weight is going to be a moving target right through his teens and into his twenties.  Hopefully if you can push him through out of the illness his hunger cues will kick in to fuel his growth during that time.

Perhaps try telling him that he has to eat because he has to grow - until the illness recedes there will be a lot of anxiety about weight issues.   But while that anxiety is there it is usually a sign that you need to keep pushing with the calorie intake.  

__________________
Believe you can and you're halfway there.
Theodore Roosevelt.
EC_Mom

Caregiver
Registered:
Posts: 342
Reply with quote  #7 
When I told my d she needed to eat in order to grow, she snarled in that awful ED voice, "I'd rather be SHORT than FAT!" So in my case it didn't help. Murmur comforting noises and distract, but remain firm in yourself that he will be eating all the food.
nicolas

Caregiver
Registered:
Posts: 8
Reply with quote  #8 
Thank you all for your messages. It is reassuring to read about 'extinction burst'. I've never heard of this before but it all makes lots of sense. Thanks for the advice about what not to say. We are now staying away from all conversations about body weight, body image and body size and doing as much distraction as we can.  Unfortunately, the message 'food is medicine' does not work for my son. I think I probably said it too much in the early days and now he hates those words. However we do say things like 'this is what you need to do to get better' which kind of works.   I wonder if I can just ask one other question.... On Wednesday my son will be weighed again and I was just wondering about his target weight given some of the comments above. I think he may have now reached the weight that our dietician hinted at but maybe we should be aiming higher?   Is this something that I should be in charge of rather than leaving it to the dietician to guide me and if so, is there guidance about what we should be aiming for. As some of you pointed out, he is very young at 10 years and has a lot of growing to do.  Thank you once again for sharing your experience and knowledge. 
Torie

Avatar / Picture

Caregiver
Registered:
Posts: 4,728
Reply with quote  #9 
Quote:
Originally Posted by nicolas
On Wednesday my son will be weighed again and I was just wondering about his target weight given some of the comments above. I think he may have now reached the weight that our dietician hinted at but maybe we should be aiming higher?   Is this something that I should be in charge of rather than leaving it to the dietician to guide me and if so, is there guidance about what we should be aiming for. As some of you pointed out, he is very young at 10 years and has a lot of growing to do.  Thank you once again for sharing your experience and knowledge. 


Yes, your son needs you to be in charge of deciding how much weight is enough.  (!!!)  It is unfortunately way too common for the "professionals" to set the weight too low and also say idiotic things to the sufferer.  (My d's pediatrician, for example, sent me out of the room and then told my d it would be okay if she LOST a little weight - at a time she most definitely needed to keep gaining.  And this, AFTER I had called to speak with the ped beforehand and gain her agreement that d needed to weight at least x pounds.)

You will need to be very clever to protect your son, unless the dietician is extraordinarily clued in.  I would try very hard to keep the son out of the room and away from the dietician - a 10 year old does not need to talk to the d, although the parents may benefit from it.

I urge you to be very clear with your son that YOU are the person who knows him best and loves him most and YOU are the one to make the decisions about his care.  (After consulting with the professionals, of course.) 

Please, do not make the mistake so many here have made (raises hand) in trusting ANYONE else to make these kinds of calls.  The only way to know how much weight is enough is to live with the sufferer on a daily basis to see when brain healing has started.  Even then, a young boy needs to keep gaining - he will need a tremendous amount of food to transform into a man.

You're doing great.  Keep going. 

-Torie



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

Caregiver
Registered:
Posts: 23
Reply with quote  #10 
Hi Nicolas. I think we are slightly further along in the journey than you. Our eight year old son is classed as Weight restored by CAMHS as he is 105% weight for height. We are seeing big improvements but some of the anorexic behaviours are still there. He always tracked along the 91st to the 95th percentile for weight on the charts since he was born and is also on the 91st percentile for height. I am continuing to aim to get him back on to the original growth curve he was following. He had dropped to about 75th percentile and we have him up about 85th now but we are continuing to push the weight as I have seen so much advice about this on this forum. Our sons still have a lot of growing to do and will need to put on a lot of weight for years to come.
Good luck with continued feeding and it does get easier.
Tammy
tina72

Caregiver
Registered:
Posts: 628
Reply with quote  #11 
Hi nicolas,
at that age I would NEVER stop any weight gain until he is at least 20 and full grown.
There is no target weight until that moment. They grow a few cm and oups you are full back in relapse if you stop now.
I totally agree with Torie: there is no need for a 10 year old to talk to a dietitian.
You are in charge. You live with him and you see change in mood when he is better.
The dietitian is there for you. She should help you with ideas for meals if he is not gaining enough and nothing else.
To have an idea: look at his grows chart and his weight chart over the last 10 years. If he was 50 % percetile, keep him at least above that for the next ten years. If he was 75 % percentile, that must be your red line.
I agree that often professionals set target weight too low and cause unnecessary relapses with that.
Don´t let him know his weight if possible and don´t talk about targets with him.
A 10 year old boy should not even think about his weight normally. He should be outside playing with his friends.
Tina72
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 2,005
Reply with quote  #12 
quote
" I wonder if I can just ask one other question.... On Wednesday my son will be weighed again and I was just wondering about his target weight given some of the comments above. I think he may have now reached the weight that our dietician hinted at but maybe we should be aiming higher?   Is this something that I should be in charge of rather than leaving it to the dietician to guide me and if so, is there guidance about what we should be aiming for. As some of you pointed out, he is very young at 10 years and has a lot of growing to do.  Thank you once again for sharing your experience and knowledge. "

I urge you to take control and make sure that your Son knows you are in charge, and not the dietitian.
Honestly the specialist dietitian did us more harm than good, and also it took much longer for us to deal with this than needed be, as she had given my son terrible information. For example that he was weight restored at 14 and could maintain at 50kg,uugghh... he was being kept in his illness, and living in a terrible part recovered state....I had to ask her to add extra snacks that she did not agree with in front of my son, and he was constantly on the verge of relapse or relapsing until I fired her and fed him like a farmer, every meal every day.... We are into year 3. He is doing great...
This is such a long road....
I really like this video, it is an hour long, but an hour well spent.


__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 2,005
Reply with quote  #13 
I bumped up a thread called stages and timelines, that is also well worth a read ...
__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
nicolas

Caregiver
Registered:
Posts: 8
Reply with quote  #14 
Once again - a massive thank you to everyone. This really helps. It sounds like we need to aim for comfortably above the 50th percentile growth curve (which is where he was when he was younger) and we need to keep him there.  No more meetings with the dietician - it makes lots of of sense as the sessions are very distressing for him. 
We have our first 'family therapy session' tomorrow with CAMHS. I don't actually know if this is FBT as I have been given no information about it but I am hoping it can complement the excellent advice on this forum. But increasingly I am coming to understand that it's over to us as parents all the way.  
Toothfairy - thanks for the pointers to other threads and the link to the film - I'll watch/read with interest. 

 

toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 2,005
Reply with quote  #15 
You are very welcome and you are doing great!
__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
EC_Mom

Caregiver
Registered:
Posts: 342
Reply with quote  #16 
Nicolas, great work and I can feel your steely resolve in your posts!

I might suggest that you not "aim for" any specific goal weight now. You are aiming for gain, period. There is no endpoint you need to think of yet. The thing is, as others have said, ALL our nutritionists and pediatricians told us we could "stop her gaining" at a certain point, and only 10 lbs later did her behaviors improve. Everyone I know here whose kid has recovered went well above the "target". You don't know what the true target is.  

His body will know what it is, it will stabilize in a range, and the hold of the ED will SLOWLY loosen. It might be helpful to you to imagine a number that is your goal weight now, but please keep in mind that it is a moving target, and state of mind is more important than number of lbs.
nicolas

Caregiver
Registered:
Posts: 8
Reply with quote  #17 
If it's okay to continue this thread I would like to ask something else following a very disappointing session yesterday with our family therapy team at our CAMHS service. Unfortunately the family therapy we have been offered is not a specialist service for anorexia - it is systemic family therapy. We had our assessment yesterday and it was very clear that they had an unsophisticated understanding of anorexia and not trained in FBT.  I had to intervene at one point in the conversation to stop them exploring with my son about how he would like to get control back over his eating (what he would want to eat etc.). He became very distressed and I feel that there is potential for the session to do more harm than good.  As this appears to be the only psychological support we are being offered, apart from 1-1 CBT which is not evidenced as successful for 10 year olds, I now wonder if we should seek some clinical help from elsewhere. Does anyone have experience of accessing FBT services out of area or maybe paying privately for regular consultations? I realise that most of this comes down to us as parents but I would feel reassured by having access to clinical support that we can trust. 
tammy

Caregiver
Registered:
Posts: 23
Reply with quote  #18 
Hi Nicolas, We were in the same situation as you at the beginning and we were refused access to FBT as services were stretched and our son had not lost enough weight yet. We are in Scotland and I got the support of our local MSP and also got some valuable advice from Eva Musby. The Eva Musby website has very useful section about England and what you can expect. It refers to waiting times and also to NICE guidelines recommending FBT. Hope this helps.
Tracy
tina72

Caregiver
Registered:
Posts: 628
Reply with quote  #19 
Hi nicolas,
so sorry about that bad appointment and what you write about it - RUN.
Bad help is worser than no help.
Try to find some FBT therapist over the maudsley parents webside
http://www.maudsleyparents.org/findtreatment.html
I hope some scottish parents will be here soon to give you some advice.
Would Skype sessions with Eva Musby help you?
Don´t be afraid if you have to do it on your own. If you don´t find a good professional help or up to then you can do that alone.
We are all here to help you. You are not alone.
Tina72
toothfairy

Avatar / Picture

Caregiver
Registered:
Posts: 2,005
Reply with quote  #20 
Run.....and contact Eva Musby, she does private telephone consults. Thats my advice!
__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
nicolas

Caregiver
Registered:
Posts: 8
Reply with quote  #21 
Thank you both - really kind of you to get back to me so quickly. And also very reassuring because I emailed Eva Musby earlier today (!). I'll follow up the Maudsley parents link too.  Thank you once again! 

EC_Mom

Caregiver
Registered:
Posts: 342
Reply with quote  #22 
Nicolas, how lucky your son is to have you watching his back. You know more than those doctors, so much more. It's the ED controlling him, and you need to vanquish ED.  Run away. You can do this and you are already doing the right things...Eva Musby!!
Torie

Avatar / Picture

Caregiver
Registered:
Posts: 4,728
Reply with quote  #23 
I seem to be late to the party, but I will join the chorus in saying that this "help" sounds worse than no help at all.  Good grief, there you are, wrestling with a two ton bully monster, and they can't even master their couple of sound bites?!?

Ugh. xx

-Torie

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

Caregiver
Registered:
Posts: 11
Reply with quote  #24 
Hi Nicolas.  Congratulations on the hero's work you are doing.  May I recommend a little book (literally, you can read it in an hour!) by Maria Ganci, "Survive FBT:  Skills Manual for Parents Undertaking FBT for Child and Adolescent Anorexia Nervosa".  It's available on the Book Depository website.  We have been very lucky to have a great FBT therapist, but even so, in the brain fog of stressful days, my husband and I have found it excellent to remind ourselves of just what each stage is about.  If you're going to have to do this without professional help, it may be a useful tool.

EC_Mom

Caregiver
Registered:
Posts: 342
Reply with quote  #25 
Wow, I never knew about this book. Can anyone else here chime in if they've used it? I would have loved something like that while in the deep trenches. 
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.

F.E.A.S.T. Families Empowered and Supporting Treatment of Eating Disorders
is a 501(c)3 charitable organization committed to maintaining the Around the Dinner Table forum as a FREE service for any caregiver of a loved-one with an eating disorder.

P.O. Box 1281 | Warrenton, VA 20188 USA

US +1 855-50-FEAST | Canada +1 647-247-1339 | Australia +61 731886675 | UK +443308280031 

This forum is sponsored by F.E.A.S.T., an organization of parents serving parents and caregivers of patients of all ages with anorexia, bulimia, and other eating disorders. Information and advice given on this forum does not necessarily represent the policy or opinion of F.E.A.S.T. or its volunteers and is meant to support, not replace, professional consultation.

F.E.A.S.T. is registered as a nonprofit organization under section 501(c)(3) of the United States Internal Revenue Code.

Terms of Use | Privacy Policy | Community Rules | Forum Rules | F.E.A.S.T. Principles | YMadmin | WTadmin
Custom Search of F.E.A.S.T. and Forum Content: