F.E.A.S.T's Around The Dinner Table forum

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Hope2019
Hi, All,

 

   I am so lucky to find the forum and so grateful for all the support, love and care from all of you!  Mamabear, Debra, Mamrao, Food_Support_AUS, deenl,Tina... You have been holding my hands when I was terrified and lost…I wish I found the forum last year when my s got sick.

 

   I would like to update our current status and next plan so it might be helpful for other families if you have similar situation.

 

   1) 11 yrs s got diagnose AN in 03/18, when he already lost 15lbs in 3 months, but I did not pay attention and did not take it serious even after the diagnose, did not try to re-feed as hard as possible while waiting for the FBT, I wish I knew this forum that time, he restricted his daily intake below 500cal, we had to let him do 20min push ups in order for him to eat something, he run away and hide in place doing push ups.

  2) 07/2018, he hit the bottom,he was  70lb for 12 yrs, got IP because of low BP for 1 week, then went to residential program for 6 weeks, weight 90% restarted, directly went to PHP/IOP for 2 months, I would say WR in 11/18 when discharge from IOP, his weight was 94lb.  he stopped all exercise in residential program and got it in control since then.

  3) Started FBT in 11/18: not very effective, since then he has been counting everything, his weight stopped at 94lb since that is PHP recommended,  s stopped eating same portion food when he was in PHP, always complained too much food, his w is back to previous, 60-70% percentile, but he is very restricted, always takes ensure if he thinks the food is more than 2 ensures.

 4)  I found the forum in Jan, thanks for all the food tips that I was able to put 1lb/week since Feb, his w is 110lb now, when I got him a good last month, I tried to close  out his ensure, after 2 days flight and skipped 3 meals, I offered him homemade shake after I told him I will make the shake is equal to 2 ensure, but he had to watch the ingredients going into the blender, after couple of times, I had to make a call to stop the shake and resume the ensure, because of the anxiety caused.

 5)  04/01, went to ER because of big response from the school trip he could not go, he was in bad mood, after refused  3meals/ensure, checked in ER, but I was disappointed there, ER only gave him a regular or small meal for him to eat, so he skipped 3 meals and I could not ask ER to add the missing meals, that made the ED happy.

  Progress in one year:
   1) s was 70lb last year same time, exercise, ate less than 300 cals a day, very depressed. 
   2) now his w is 110lb, no fear food, no exercise, eats up to 3000 cals a day (include ensures),happy most of time, does not skip meal/ensure most of times, he only did coupe of times in last coupe of weeks because of school trip.

 

   Feedbacks:
  1) Like some kids, my s did not response well to LSTYE, the threaten of residential or ER or NG did not change his mind, when he made up his mind, he rarely changed, he never give in like he said, I just feel so defeated after the ER and IP.

  2) I wish I could like other parents said their kids eat whatever they put in front of them, I just never could do it, he learned too much from PHP/residential dietitians, he has the “correct” portion in his mind, that is why I strongly agree with Mamamear about dietitians could do more harm than help.

  3) We can not use ER as a tool to fight ED, only for medical reason.

  4) After I knew this forum, I told s that I did not accept any skipped meal, and it really worked, so make it loud and clear to ED what are not allowed.

  5)Everyday has been a long day, I want to run away, or even thought give up, but I never did , I know I have to fight for my s till he completed recover, I learned this is a marathon, and we will reach the end…

  
  Stuck now  and next plan:
    1) His ED thoughts still very strong even after WR for over 6 months, very rigid, does not want to take a risk if the meal is not safe (could be more than 2 ensures), he has many behavior issues, alway use food as weapon to get what he wanted, I called 911 many times when he did not want to get off the car or get in the car for the doc app, he will not sit or lie down when he refused meal/ensure, making noise in the house and we could not stop him... I really can stand that situation, so scared of it when he does it.

    2) I have been waiting for UCSD and got everything ready for it, that is our last bet now...

     Everyday I want this to be over like all of us, has to admit that this is a long process, patience, food, love are the keys, and we all have to find out what work for our kids, it is hard, have to try different methods and learn from the feedbacks... 
     I cried more than my lifetime in past year, I told myself to be strong, I get the love and support from amazing people in the forum, I know you are always there when I need you, I wish I could help other families later if I could...
  



  

12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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tina72
"now his w is 110lb, no fear food, no exercise, eats up to 3000 cals a day (include ensures),happy most of time, does not skip meal/ensure most of times"

That is one of the best sentences in your post and I think that is great progress! Does he gain regularly now?
Did you hear anything from UCSD how long it will take to get a place there? I really think that they can help you to get rid of the ensures and to make him eat what you serve and trust you about amounts. Maybe you can just stick to what you are doing at the moment until then?
Keep feeding. There is light at the end of the tunnel.
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Mamaroo
Thanks for giving us an update. You did really well and is very brave, just keep on swimming. I'm making dinner, so this is a short post. You said he is WR for 6 months, but I count from the 110lb, so that would make WR for 2 months, so his ED thoughts will still be very strong. Just keep on feeding and make sure he is gaining and things should start to look better around September to December. It takes a long time for the brain to heal, unfortunately. Sending you lots of hugs 🤗🤗🤗🤗🤗
D became obsessed with exercise at age 9 and 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. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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Hope2019
@tina: I think he does not gain as much as 1 lb/w now, I stopped sneaking cream in his ensure because he complained the ensure was too thick and refused to drink last week, I had to switch a different kind of ensure now and does not want to risk again, I just give him food I know he will eat also it is adequate, I still keep adding cream and oil whenever I could,  UCSD does not have a date yet, I hope there is one in may, I will just keep what I am doing now while waiting UCSD.
@mamarao: good point, I always want to come back to his wr, the treatment team set his target weight 94lb, he stayed 94lb between 10/18 till 01/19,then started to gain 1lb/w from Jan, reached to 103 in feb and 107 in March, now is 110, before AN he was 60% percentile weight,now he is close to 70%, FBT Therapist also mentioned to me that I should maintain his w not gaining as much as before, I agree with you that he got wr in Feb, and I want to  believe the time you mentioned that he will start getting better around sep, counting on it!
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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Hope2019
Hi,Toothfair,
 thanks for sharing your story, you have done amazing job to get your s back.

i feel like your s is more mature, open,complying than mine, it is great you could get over 4000 cals in, I could not do it now, did you fight a lot for him to comply to accept what you gave him? my s is very stubborn, once he makes up his mind, i could not make him to change, I am so scared to try LSUYE again, we ended in ER twice this month when i tried to stop his ensure and not give in his physical activity demand  to make up his school trip...i was miserable when he was in ER, feeling defeated, angry, hopeless... 

he only takes safe food and ensure now, very rigid, so I just wait for the UCSD now ...he goes to PE ( 2 or 3 times) , I know that is the main incentive in school for him,  I could not pull him out of PE, treatment team ok him for PE.

Our last FBT session, therapist told us we have to move phase 2, since we have been in p 1 for 6 months and we could let my s plate his meals couple of times, he does not plate terribly,but not good, I just do not think he is ready and still plate for him.
my s lowest BMI was 14 last July, was 19 last Nov when discharge from PHP, now it is 22, i would like to get 24 and stay there, try to feed one extra bit every time, he is still mean to everyone in the family, has to deal his behavior issues big time, he told me he never gives in... 

 i now accept this is a long road, do not wish miracle will happen to me, I am grateful this forum, I come here spend hours everyday to learn, I am here....
 
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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tina72
It is totally crazy to move into stage 2 with this strong ED behaviour. Stage 2 is for patients that did stage 1 and were compliant about getting meals and snacks served and that gain regular and are in a mentally good state.
You are totally right that he is not ready for that, keep plating! I know not one single family that started stage 2 too late but a lot that started stage 2 too early (my hands up, too). There is no need to hurry with that.
It is really nothing you can do with a fixed time line. 6 months is nothing with an ED. Most families stay in stage 1 for more than a year...
Keep feeding. There is light at the end of the tunnel.
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toothfairy
Hi there,
My S was not compliant & very very difficult.
He was not at all open, until now, 3.5 years on as I insist on it & his brain is healed.
One of his clinicians told me that he was the most difficult person that she had ever dealt with. So no, it was not easy.
I had to clear my diary & just deal with him, his meals & his supervision for a very very long time.
I had to stand up to the anorexia & be stronger and more difficult than the anorexia.
I got  up really early every morning with him & I fought tooth & nail to get every single calorie in.
It has been a long hard road, I am totally burnt out & exhausted, but he is very very well now. I am now piecing my life back together.
Many kids do not get to enjoy this level of recovery as the recovery rate is low, but I was absolutely determined.
I am so glad you are going to UCSD.
I bumped up the “ stages & timelines “ thread for you.
it is well worth reading through the whole thread including the links.
Best Wishes
Food is the medicine. Recovery is possible.
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Hope2019
Toothfairly, I really think my s sure is one of most difficult ED kids like your s.

i just had a terrible 4 hrs: after breakfast he started no stopping walking in the house, angry, sad , I asked him why he was doing that, he said I knew, I gave him couple of reasons could make him sad, he denied and keep walking, my h tried to stop him by grabbing him to the chair, but they got ugly and physically, I had tonstopped my h, otherwise neighbors will call police.  2 hrs later, he finally told me it was because i yielded at him when I asked him to stop playing video game when his time out, I really do not think I was yelling at him, just high voice, and he told me if later me or my husband “ yield” at him, he will always start walking in the house with no stopping....I told him I will deduct his PE for his walking, he does not care, I told him we need to ask our FBT Therapist how we can avoid the walking, I really can not stand it ....ED is such a B***, so hard to deal with, what I should do for his behaviors? He always does similar thing when he is bad mood or refuse food/issue, no stopping walking or disrupting me, he was stubborn before he was sick, but never like this level, I had to apologize to him and waive his consequences like no screen time, I know if I did not end it, the lunch and dinner would not get in...I thought the food is the highest priority now and I could fix his behavior issues later...
but not sure if I should being rubbishy to put up his behaviors ? what I should do when he does it again? it is  a nightmare to me.
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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Foodsupport_AUS
Your son is using his eating disorder as a weapon to fight you. I know that you have been offered the week at UCSF and really think it may be better to do that than wait for UCSD. It is coming up in only 8 days if you can get in. http://eatingdisorders.ucsfsitebuilder.acsitefactory.com/intensive-family-treatment-ed-ift

He may be physically safe but it sounds like his behaviours are becoming more and more challenging. 

It is really hard to stay calm and not confront his eating disorder head on, but unfortunately our children feel strongly compelled to defend their disorder - or it gives them an even harder time. It sounds like perhaps removing screen time would have an impact, should he be attending school. You don't need your FBT's permission to make consequences but at the same time it is important to find things that will not drive him to worse ED behaviour. 
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.
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Hope2019
@Foodsuppoort_AUS: I am ready for UCSF 04/22 now, just talked to them last week, I still prefer UCSD, so we will not have any regret later, I really hope there is one in May. I will try to keep things stable, keep him in good mood this month before UCSD. I also scheduled re-assessment with PHP he went last year, it was good program, he ate all lunches and dinner I packed during the program, now he can not eat them after 6 months discharge. I will talk to them to see if I could get him in this month so he will not be out of control before we go UCSD, I feel like I am walking on egg shell again after went through those terrible times recently, 

@ Tina: If I did not know this forum, I would have let him plating meals, which I will lose control soon, thanks for reminding me that!
I will keep plating his meals till he is ready, we know our kids best.

@toothfairy: 3.5 years is a long time, can image how hard it was for you, cause I am right here now, try to lift my face out of water everyday, I have been crying a lot, more than my whole life... I am glad for you, your hard work payed back, I feel like boys are more challenging than girls, I am so scared as he is getting older, I know I have to fight harder now to get him back before he turns 17 or 18...

I feel like every time if my s had a long walk or camp, his behavior and eating gets worse, I am not sure if this is common for ED?
1)Yesterday Dad took my 2 boys to Great America from 11am to 5pm without adding any extra snacks, my s never wants to add extra snacks if he has extra physical activities, I noticed he was not in good mood after them came back, he did similar behavior issues last night and this morning. 

2) He went to a 2 days BoyScout camp last Dec, even he ate the same as other kids with his regular snacks during the camp, it took me 2 weeks to get him back prior to the camp.

12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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Ronson
Hi 

My d also says I have yelled when I have not or asks why I am angry when I am not.  I think the Ed can make them sensitive to emotion and also they can find things hard to read.

I know it’s hard but try not to say you will ask FBT team what to do.  Your son needs to know you are in charge.  So even when you have no idea what to do it is best to fake confidence.  Discuss with your husband and present a united front.  When my d walked we made a corner of arms around her so she couldn’t.  So not restraining her but just preventing her walking anywhere. 

Yes if they have additional exercise without additional calories the behaviour gets worse, any calorie deficit allows Ed to sneak in.  

You speak a lot about what he will and won’t do.  Unfortunately you need to take over these decisions for him.  I’m not sure what Great America is but I would have said - we are going to great America - you will have X for breakfast before we leave.  When we are there you will have X.  If you cannot we will have to come home as it is not safe for you to do that without eating properly. 

It might well be that he has to miss out on things.  If that is the case make it clear that Ed is preventing it and not you. 

it is really hard to do but they need to get the food in.  

Regarding plating of food - my d is 14 now and I expect to be plating for a couple years at least - like Toothfairy I am taking the approach that she needs this and it is better to be safe than sorry.  She also now has a normal life and can eat lunch or a meal unsupervised but we make sure it’s only one meal unsupervised and we plate all meals at home.  Your son is only 12 - he needs you to take control and feel safe to eat with you and to achieve this you need to show him that you are stronger than Ed 

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Hope2019
Ronson, thanks for the tips, I will fake confidence, already discussed with H for what do next time, I may try to make a corner and limit him. 
We are at the stage that my s would give up his favorite activities if he has to add extra food, he just eats his regular meal plan even if with extra activities, I could not let him to eat any extra food, he gave up his one week school trip because doc asked him to add an extra snack, even he really wanted to go to trip, one extra food is like a huge thing he never could not take it.
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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Hope2019
Hi,Robson,
  my s is 110lb with 4’9”, BMI about 22, he stayed here for 2 months,he was  I give him about 3000 cals daily, I could not give him more than that now, he will take supplement if meal is big, and that is what we are stuck here and wait for UCSD...
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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tina72
I really would quit PE now if he blackmails you with walking around in the house with no stop. This must have consequences and he must learn that when he wants to burn extra calories he must eat them first.
Keep feeding. There is light at the end of the tunnel.
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Mamaroo
My d would be super sensitive how I said things. I would be upset about something totally non ED related and then ask her to have a snack and she would burst into tears because I 'yelled' at her. It is just ED, unfortunately. 

I hope to are able to go to UCSD very soon.

Sending you lots of hugs  🤗🤗🤗🤗🤗
D became obsessed with exercise at age 9 and 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. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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toothfairy
Hi Hope,
You have been given really great advice above.
Here is what I did. 
I did not allow PE even though his clinicians ok'd it and sport.
I decided that he could not do PE as it fed in to the illness. Sometimes we know our kids better. You are the captain of your ship.
I learnt not to engage with the anorexia. I would not negotiate with the anorexia.
When he stood beside me as I was cooking and questioned the ingredients etc... I told him, "I do not engage with your anorexia", "I am your mother, I know what you need". He got such a shock that he stopped doing that.
Regarding the trips, I did not allow the trips. He could not go on a trip until he was very well and could eat independently in any setting.
Then I only allowed him 2 night away trips to see how he got on. He was 2 years into recovery, without behaviours that you describe before I allowed this.
I would not allow him on days out unless he had full nutrition as I saw fit. I told him that it was anorexia that was stopping him and not me.
I would also reconsider whether he is fit for school. We had to pull from school for the best part of a year and phase him back. Then his school lunch and snacks were supervised by me for 1.5 years. After that I put a safety net in place.
He also needed supervision through the night to make sure he was not exercising or purging. Many of  us had to sleep in the room with the kid for a very long time.
It sounds like the anorexia is still  controlling your poor s,you and your family. It helped me to separate the illness from my son and deal with him that way.
I also had to have a Plan A, Plan B, Plan C, Plan D
His exercise compulsion is a real problem and needs to be stopped. I wonder if he really needs a higher level of care.
I  am guessing from what you have written that you live in California. It might be helpful to know that if you take him to hospital to keep him safe in the meantime that Rady's Childrens Hospital feeds into UCSD.
Here is a great article on brain healing .
https://www.verywellmind.com/brain-starvation-and-recovery-in-anorexia-nervosa-1138303
Food is the medicine. Recovery is possible.
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toothfairy
Food is the medicine. Recovery is possible.
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toothfairy
Dr Muhlheim above has a practice in Los Angeles https://www.eatingdisordertherapyla.com/

She has written a really excellent and practical book. I would highly recommend it.

Here is the link.
https://www.amazon.com/When-Your-Teen-Eating-Disorder/dp/1684030439
Food is the medicine. Recovery is possible.
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Hope2019
Thanks, toothfairy, we are managing his exercise, he has PE, and one time family weekly physical activity, usually walking or hiking for 1 hr, we have been watching him last 6 months, I do not see he has too much urge to exercise,  yesterday's accident was due to a long day walking in the Park with h and my other s, I knew he would be bad after that, but it was much worse than I expected, he is getting better today, I learned again that we should be more cautious for his exercise.

Thanks for all your great advice, and remind me about plan B. C. or D, I am checking PHP and residential program this week and prepare for the worse before we go to UCSD.
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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aboncosk
Hope2019, could you please confirm that you sent me an email?  I received two asking for our UCSD contract, however, I'm not certain that it's a legitimate email.  It seems like it could be spam.  Once you confirm, I will email you what our contract was from UCSD.  Thanks,Aimee
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Hope2019
hi, aboncosk, Yes, I sent you email for the UCSD contract, one though your email and one from the forum email, when I was not sure if you got my first one. thanks a lot!
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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aboncosk
Hope2019 - I will respond via email 🙂
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Torie
Hope2019 wrote:
We are at the stage that my s would give up his favorite activities if he has to add extra food, he just eats his regular meal plan even if with extra activities, I could not let him to eat any extra food, he gave up his one week school trip because doc asked him to add an extra snack, even he really wanted to go to trip, one extra food is like a huge thing he never could not take it.


It is so hard.  So very hard.  One extra food is indeed a huge thing - it is a huge thing for him to eat that and also a huge thing if he loses those calories without replacing them.  I would urge you to stand firm on this.  One day he will be able to make the correct decision and eat the "extra" food in order to be able to do the activity.  Until then, perhaps there are sedentary activities he could enjoy instead?  

Hang in there. xx

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