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

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Hope2019
Hi, All, 

 I have been reading this forum whenever I have time for my son 12 son, so many great people here giving me suggestions when I posted my first question... you guys made me cry...

  My son weighted 85lb on 09/17, then he got AN around 12/17, the lowest he went was 66 lb in 07/18, after few months treatment, his weight was 94lb in 10/18, med doc told me just keep his weight, but I have been trying to gain few lbs since I read so many parents said their brain only starts to heal after above 75% percentile, today I just came back from med doc app, they told me my son is 55% percentile, almost like before he was sick (09/17), but my son's ED behavior still very strong, counting calories all the time, whenever he estimates the meal is above 700 cals, he will choose take boost for supplement, I know many parents could give me a guide, should I keep pushing his weight to 75% percentile? he has grown much in the past year, his height only 17% percentile, if I keep pushing his weight to 75% percentile, will he look very heavy? how many lb I should push for 75% percentile? I appreciate your inputs.
12 years son with AN, ip one week, residential 5 weeks, IOP 7 weeks, now FBT 2 months, refeeding
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Mamaroo

I put your values and dates again in the chart and so that I can understand correctly, this is what I got: At age 11.5 his weight was 85 lb (I'm guessing 11.5y because that is where the 50% curve is). In October last year (at age 12.5 year) his weight was 94 lb (which puts him below the 50% curve, so not above 50% curve). Today his weight should have increased to 97 lb (on the 50% curve). Is that his weight or is he still at 94 lb? Healthy children gain weight the whole time even until their 20s. So if their is no weight gain between October and now that is a concern. A child does not stay WR if he stays at the same weight, rather when the weight increases along his historic curve. So your son's weight should increase to stay on the 50% (or 55%) curve. You can check the values and see if I've made the correct assumptions. Having said that, many parents here have found that an extra 10 lbs does the trick to eliminate most ED behaviours. (PS you should only push for 75% if that was his historical weight curve). 

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.
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tina72
I would like to add to trust on state, not weight alone. You will see when he is WR when his state and mood changes slowly.
Keep feeding. There is light at the end of the tunnel.
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debra18
My daughter is also 12 and similar weight to your son. They have to continue gaining weight through their teen years. So I continue pushing up her weight slowly to account for growing and puberty. 
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Hope2019
Thanks for all your feedback, here is my son's weight history, I would like to push another 5 -10 lbs till I see ED leaves, right now, I do not see ED is leaving him yet, Med doc told me yesterday that he is already heavier than average, he wanted me to slow down the weight gain, but I disagree.

84lb (before ED)  --11 1/2 ysd, 09/17
65lb                      --12     ysd   07/18
84lb                     ---12    ysd    09/18
94 lb                    --12     ysd    10/18
94lb                     ---12    ysd    11/18  
98lb                      ---12 1/2 ysd   01/19


12 years son with AN, ip one week, residential 5 weeks, IOP 7 weeks, now FBT 2 months, refeeding
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tina72
Keep feeding until you see a change in behaviour and mood. State, not weight.
Go with your gut feeling.
Keep feeding. There is light at the end of the tunnel.
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mamabear
I think my perspective is unique bc I had NO growth curves to follow, so we had to wing it. 

My daughter was 10.5 when diagnosed ( AN started probably around a year earlier). 

At diagnosis she was 68 pounds and four feet 7 inches. Within the first 4-5 months we got her up to the mid 90s... and that’s when GROWTH hit. 

In the next 2.5 years she grew 9 inches. She went through full puberty. Boobs, hips, period. It took a massive amount of calories and FATS FATS FATS FATS  to just keep up. 

At tge the beginning of 9 th grade everything finally leveled off and her hupermetabolism righted itself. Her weight redistributed naturally and she blossomed into a curvy beautiful young woman. This is when she was finally able to eat on her own. It took a solid 3 plus years... followed by a couple years of dolphin parenting. 

Sge is now 18.5 away at college living an awesome ED free life. She eats what she wants when she wants. 

So my advuce? Just FEED HIM and keep his weight climbing bc he WILL grow and it WILL catch you off guard. A stagnated weight with growth equals loss. 

“ normal” kids will pudge our a little bit before they grow. Our kids don’t. 

So dont get hung up on the “ 50%” thing. I can tell you that those of us well on the other side have seen our kids flourish by going FAR ABOVE the “ recommended weight” given by professionals. Bet my h is a doctor. I am a nurse. 
His state is showing he needs MORE  WEIGHT. Feed him tons of fats. 

There’s my 2 cents. ❤️
Persistent, consistent vigilance!
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Hope2019

mamabear and tina72,
 Thanks for your inputs and confirmed my plan, I will keep feeding him. I do not know where you located, but I feel like you are just sitting next to me, and encourage me every day...


mamabear wrote:
I think my perspective is unique bc I had NO growth curves to follow, so we had to wing it. 

My daughter was 10.5 when diagnosed ( AN started probably around a year earlier). 

At diagnosis she was 68 pounds and four feet 7 inches. Within the first 4-5 months we got her up to the mid 90s... and that’s when GROWTH hit. 

In the next 2.5 years she grew 9 inches. She went through full puberty. Boobs, hips, period. It took a massive amount of calories and FATS FATS FATS FATS  to just keep up. 

At tge the beginning of 9 th grade everything finally leveled off and her hupermetabolism righted itself. Her weight redistributed naturally and she blossomed into a curvy beautiful young woman. This is when she was finally able to eat on her own. It took a solid 3 plus years... followed by a couple years of dolphin parenting. 

Sge is now 18.5 away at college living an awesome ED free life. She eats what she wants when she wants. 

So my advuce? Just FEED HIM and keep his weight climbing bc he WILL grow and it WILL catch you off guard. A stagnated weight with growth equals loss. 

“ normal” kids will pudge our a little bit before they grow. Our kids don’t. 

So dont get hung up on the “ 50%” thing. I can tell you that those of us well on the other side have seen our kids flourish by going FAR ABOVE the “ recommended weight” given by professionals. Bet my h is a doctor. I am a nurse. 
His state is showing he needs MORE  WEIGHT. Feed him tons of fats. 

There’s my 2 cents. ❤️
12 years son with AN, ip one week, residential 5 weeks, IOP 7 weeks, now FBT 2 months, refeeding
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mamabear
I am in Upper Michigan ❤️
Persistent, consistent vigilance!
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Hope2019
I am in San Fransisco, we see Standford FBT sessions.
mamabear wrote:
I am in Upper Michigan ❤️
12 years son with AN, ip one week, residential 5 weeks, IOP 7 weeks, now FBT 2 months, refeeding
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Hope2019

mamabear,

Also I used to be a doctor in anther country, but I have been in total different career in this country, your h and you both in medical field, this should be a big plus for your d recover for sure.
lei09247 wrote:
I am in San Fransisco, we see Standford FBT sessions.
12 years son with AN, ip one week, residential 5 weeks, IOP 7 weeks, now FBT 2 months, refeeding
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mamabear
She is recovered- has been for years. Diagnosed at ten and now 18. 
Idk if being in the medical field is super helpful other than being confident in QUESTIONING AUTHORITY. We know doctors are humans who don’t take out the trash too. Not all equal.
Persistent, consistent vigilance!
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tina72
I am in Germany so not REALLY sitting next to you but would love to and I am sitting next to you virtually 😉.
Keep feeding. There is light at the end of the tunnel.
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Hope2019
mamabear and tina72, my big hug to both of you!

my son's weight went 1lb this week after I added hidden old to cooked meal, hamburger...
but he refused my homemade pancake when he found out the oil was much more than before... he suspects a lot now, but has not found out the extra oil in his plates yet, I know we have to be smarter than ED, any tips for add extra oil and regain his trust? 
12 years son with AN, ip one week, residential 5 weeks, IOP 7 weeks, now FBT 2 months, refeeding
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tina72
Smoothies are great to add oil and cream, it disapperes in the blender. Got us 1000 calories extra with 2 drinks.
Vegetarian patties are great because you can leave them in the pan after frying and they suck all the oil in the pan and you can add new one to warm them up when meal time.
Cook when he is in school or asleep or get him distracted while you are in the kitchen (dad? siblings? neighbors?). Try to not get caught.
Keep feeding. There is light at the end of the tunnel.
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Hope2019
Thanks for the Vegetarian patties and smoothies, here are the issues I face:

1. For smoothies, he does not trust me how much the stuff I put, he will not drink it unless he watches me doing it, I have been thinking about it, should I let him watch while I prepare?
2. For unknown calories food, if I hid the label like hotdog, he will guess the max calories for that type of food, and only manage one hotdog even I always want to give him 2, so no hotdog for months.
3. Is it a good idea for him to know the calories for a new food in order for him to eat? my son eats everything, no fear food, only concerns the total intake calories, as long as it is below 700 calories (which it is 2 bottles of Issue plus-supplement), he will eat it.

12 years son with AN, ip one week, residential 5 weeks, IOP 7 weeks, now FBT 2 months, refeeding
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tina72
No. He should learn to trust you and not count calories any more. I would not tell him how much new food has. I would unpack it and present it and just say "Trust me, I know what you need".
Can you buy bigger hotdogs if he counts the pieces?
Can you prepare smoothies without addings and tell him you will freeze parts of it because it is so much work to cut all these fruits and then add something secretly when you take them out of the freezer to serve them a couple of days later? I freeze more portions than are needed at the moment and that works good.
Keep feeding. There is light at the end of the tunnel.
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Hope2019
thanks for the great tip, tina72, I know I did wrong by showing him the label in order for him to eat, I will not do it anymore, now I unpack all labels before he sees it.

I will try the smoothies idea and bigger hotdogs.
12 years son with AN, ip one week, residential 5 weeks, IOP 7 weeks, now FBT 2 months, refeeding
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scaredmom

lei09247,

There is a common theme with ED about not trusting the parents. He will never "trust" until ED is gone, unfortunately.
I firmly believe the more you negotiate with ED the less leverage YOU have as the parental authority. He will learn to trust over time. I know you are worried about upsetting him. As long as you have a plan in place if there is upset with more food, you should be able to get past it.

Your son loves to count calories and this is ED the only way through this is to give him the nutrition he needs without discussion. I am not sure how you wish to navigate that. I know ED sounds rational but ED is not a good guy. He wants to hurt your son. The best way forward, many have of us have found is to feed them what they need and let the chips fly where they may. (Ie he will fight and it is a stage you will all need to go through).
Is you H supportive and can help you get the food in by distraction and saying that what you give is what he needs. We don't ask what is in the chemo before we take it. Food is his chemo. And he is only 12 and should not be worried about calories. It is ED that is worried about calories.
I really feel you need to ditch the 700 calories fixation, otherwise he and you will be stuck in the loop for a long time, longer than necessary.

I don't think there is an easy way out of ED. Changing the way you parent may need to happen. Many have had a paradigm shift there and become, as I have heard Mamaroo say,"benevolent dictators".
You need to take control, I know it is hard. It is scary and it is needed for him to get better.
Use your medical knowledge here, pretend he is suffering from delirium and you are the doctor to save him. You need to do what you have to do even if he cannot/will not understand.
All the best.
XXX

 

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Hope2019
Hi, scaredmom,

  You were absolutely right, the issue is my son plates his snacks after discharge from PHP, I tried to talked to our FBT therapist about my concerns that he does not plate enough nutrition, the therapist does not support my idea to take this privilege away from him, saying that is the only thing my s could control now, he does plate 2 items with known calories daily, but not able to plate new snacks with unknown calories.

For meals, please see my comments, most of time I want my s to eat the food not ensure, he will take the ensure even if he thinks there is one extra bit of rice! so sometimes I gave in to remove the tiny rice then he finishes the whole plate happily, I have been living in this situation every day.... sometimes I really questions if I should or should remove that one bit of rice? I know for sure the mea calories is more than the ensure plus he takes.

   
scaredmom wrote:

lei09247,

There is a common theme with ED about not trusting the parents. He will never "trust" until ED is gone, unfortunately.
I firmly believe the more you negotiate with ED the less leverage YOU have as the parental authority. He will learn to trust over time. I know you are worried about upsetting him. As long as you have a plan in place if there is upset with more food, you should be able to get past it.
--I have been there many times, and every time I regretted a lot for the negotiation, still sometimes I make it the same mistake when I want him to eat the meal not the ensure plus.


Your son loves to count calories and this is ED the only way through this is to give him the nutrition he needs without discussion. I am not sure how you wish to navigate that. I know ED sounds rational but ED is not a good guy. He wants to hurt your son. The best way forward, many have of us have found is to feed them what they need and let the chips fly where they may. (Ie he will fight and it is a stage you will all need to go through).
Is you H supportive and can help you get the food in by distraction and saying that what you give is what he needs. We don't ask what is in the chemo before we take it. Food is his chemo. And he is only 12 and should not be worried about calories. It is ED that is worried about calories.
I really feel you need to ditch the 700 calories fixation, otherwise he and you will be stuck in the loop for a long time, longer than necessary.
--I did not try to stick 700 calories, it is my son's max number or taking supplements, like if I give him 2 hot dogs, he will not eat it and take the ensure plus.

I don't think there is an easy way out of ED. Changing the way you parent may need to happen. Many have had a paradigm shift there and become, as I have heard Mamaroo say,"benevolent dictators".
You need to take control, I know it is hard. It is scary and it is needed for him to get better.
Use your medical knowledge here, pretend he is suffering from delirium and you are the doctor to save him. You need to do what you have to do even if he cannot/will not understand.
All the best.
XXX

 

12 years son with AN, ip one week, residential 5 weeks, IOP 7 weeks, now FBT 2 months, refeeding
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scaredmom
The therapist needs to respect you as the parent and primary care giver. Until he can eat freely he should not have a choice. Even my non ED kids are what I gave at 12. You need to discuss that with your therapist on privacy. 
I know it is your son doing the 700 calories and it needs to go out and if he fights it so be it. 
Sorry we have all been through hard things and ripping off the bandaid for the parents too is sometimes needed. 
I hope it gets better soon
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Hope2019
Thanks, scaredmom, 
  
  This has been bothering me for months, and I know I need to change it, I will talk to our therapist again for the snacks.

  
scaredmom wrote:
The therapist needs to respect you as the parent and primary care giver. Until he can eat freely he should not have a choice. Even my non ED kids are what I gave at 12. You need to discuss that with your therapist on privacy. 
I know it is your son doing the 700 calories and it needs to go out and if he fights it so be it. 
Sorry we have all been through hard things and ripping off the bandaid for the parents too is sometimes needed. 
I hope it gets better soon
XXX
12 years son with AN, ip one week, residential 5 weeks, IOP 7 weeks, now FBT 2 months, refeeding
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mimi321
Hi lei09247,

I thought I would answer your question here, as the forum prefers to have back and forth conversations on a different thread. 

 
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Thanks for sharing your story, great job!

How did you get your d to eat when she refused? any tip? I told my 12 yrd s if he does eat or take supplement, I will check him in the residential program he stayed last year, that has been working, but I was wondering how long I could use this "threatening"


I would say if that is working, keep doing it as long as it is true. 

This happened a fair amount at the beginning (refusal to eat) and then later on she decided to dig her heels in a few times. Remaining calm and stating that this was what she had to eat, and that she had no choice,  seemed to give her some reassurance and made it easier for her to eat. Also understanding that she wants to eat it, it is the ED that won't allow her to. Other mantras that helped were to say, "Eating is not optional." or "This is the amount of food you need." Also refusing to get into any conversations or attempts to justify ("I know what you need. You can trust me."). Trust me, I was not perfect or confident in the beginning, and often did not feel calm. Fake it til you make it, as they say. I found that appearing calm and confident helped even if I didn't feel it. The four C's: Calm, Confident, Consistent, Compassionate

What helped when emotions were running high and refusal was strong, was to be attentive but quiet, and express a few sympathetic "hmmms" or, "it seems like you are having a really difficult time right now" but also refusing to engage in any ED talk. Sometimes it would take an hour for her emotions to level off, but once she got back down to ground level, I would give her a prompt ("Take a bite of your toast now."). In other words, ED could rant and roar as much as it liked, I wasn't going anywhere, and when it started to weaken, I would still be there waiting. Think of ED like a storm that is passing through. You are a wise tree with strong roots. You may sway a little, but you are rooted firmly in place. When the storm passes, you remain strong and in place to offer your guidance and your s will be able to see and hear you once again. 

Take care. You will get there.
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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hope2019
Thanks mini321, appreciate the details and your love !
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mimi321
Any time! ❤️
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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