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momon Show full post »
sk8r31
Oh, so very happy to hear that restricting symptoms are quieting down for your d!  Just fantastic news....

Glad that you are able to cut back on your work schedule to allow full supervision, and also to catch your breath!  This illness seriously impacts the health of the caregivers too!  Hope you can put more good self-care in place, and that life continues its upward trajectory for you, d & family!!

Sending hugs,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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momon
Thank you sk8r, 

just got back with my h from hospital after he had hip replacement surgery. Feels like we are in the wash cycle but there is good too. D said to me tonight, "Look Mom I'm having a candy bar."  Nice. 

Funny moment-- we were talking about one of d's chickens, who is always sitting in the nest box to keep the eggs warm until we shoo her off at night so she'll go onto the roost with the other hens.  I said, "she is such a good mom." My d said, "yes she is. She'd be a great mom to someone with an eating disorder. So would you be, if I had an eating disorder."  Hahahaha!! I don't want to take that metaphor too far, because that hen accidentally breaks half our eggs while she is obsessively sitting on them.
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momon
So, d's restrictive behavior went zooming back up.  And our plan to have her put on 2 pounds by end of the month was failing, she had her annual well child check and was just maintaining weight, while growing a half inch taller in the last month. (Could the sudden increase in restricting be because of the height gain without any weight gain??)

She would not agree  to do any of the fine snack alternatives people gave me on here.  I am at max hi cal cooking on meals so am not able to bump that up....  (learned that coconut milk does make tasty rice, so that was one piece of good news.)  I actually counted calories last weekend for the first time, and found that although it was a very successful day it was only about 2300-2500.  I realized we need more and that since adding any super hi cal snack was going to be a battle, decided I might as well battle  for the shake.

It took some major pre-planned fancy dancing to get my husband on board with saying that she had to have a daily shake and that if she didn't gain the weight by end of month there would be consequences, but he saw the light. He gave d this awful news tonight. Then started Shakemageddon.  She pitched a total fit that went on for about an hour and a half and included a short-lived run away attempt, but interestingly, about 1/10 of her brain seemed sane and could still engage in some joking during her wild rumpus.  AND SHE ATE THE SHAKE!  Woo Hoo! Woo Hoo! Woo Hoo!

I expect the same brouhaha tomorrow night  as her last words to me tonight  were that she won't drink the shake tomorrow.  But....  I think I can keep husband on board.  And if we are both on board, we will not lose.  Since I was prepared to stop everything she and I have going this week if necessary to get the shake in.  I think the key thing is that my husband delivered the awful news, so she saw it wasn't just mom requiring it, and perhaps even more, that he was not scared of her having a shake so maybe it wasn't scary. (In the past he got all freaked out when she did).   Just my guess about why even though she pulled a full-scale flip out, it had a bit of a perfunctory feel to it. Like an actress who is just phoning in the performance  [rolleyes]


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sk8r31
Oh momon...so sorry about Shakemageddon....though the name made me laugh!  

I do think having your h on board, and actually being the one to say shakes are needed is a huge 'plus' in your family's struggle.  Having h on board, and the two of you really together on this, is just great.

Getting shakes into my d was the hardest thing ever...her 'number one fear food' was shakes made my mom!!

But in our case, it really was key to getting the weight on, and at the rate that was necessary...we had a contract that she had to gain XY pounds by the end of the summer, in order to have a full year of WR before going to college.  So there was 'buy in' and extreme motivation...and even so, it was terribly difficult for her to drink the shakes.  But it did get somewhat easier over time.  And we had a routine that involved her drinking the shake next to me on the couch, watching a short comedy TV program.  It was also the only time that she allowed a bit of touching...when she would sort of 'lean in' to me while we were sitting side-by-side.

Hang tough today, and for the next little while.  I'll bet that 'phoned in' academy performance dulls over time, to acceptance.  

And very possibly the rage and restricting is related to growth, without weight gain.  Even a few pounds 'lost' can trigger the ED beast.

Sending warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Colleen
"Shakemageddon"! HAHAHA! Sounds like d isn't the only one who held on to her sense of humor!

I think you're right about the growth without weight gain. Makes perfect sense. And WoooHOOOOOO for getting h on board! That's powerful stuff!

I'm going to bet that the shake goes down with 50% less drama tonight. Fingers crossed! Keep us posted.

Awesome work, momon. You are amazing.
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Torie
What Colleen said.

So glad to hear you were able to get your h on board with the shake. Great job all around.

Team Momom 1
Ed 0

Keep up the good work! You rock!

xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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momon
thank you guys so much for your support it helps a lot.

Last night it ended up an ED score. Shakemageddon went on for hours. Full ED freak out. No humor intermixed all deadly serious craziness. Eventually, D cunningly split me and h by taking the shake into the kitchen where he was, setting it down, grabbing an ice cream bar out of the freezer and starting to eat that instead. H was not delighted but didn't stop her as we couldn't get ice cream bars in her either so he figured that was pretty good. Plus he was exhausted. But ED knew it had half the calories, no doubt. We shoulda sent my daughter in to negotiate with Iran, she would have come back with Ayatollah Khameini's turban along with the uranium.

Tonight we got the shake in, a little smaller one and all 3 of us drank one, but I figure it still did the job. Shakemageddon again with d cursing like she was in a Tarantino movie. We did watch a comedy program while she drank it, as we do at dinners now. Anyway we got it in and h and I rejoined forces which I am super-relieved about. This time D's freak out only persisted about 20 minutes after she finally drank it. That will have to count as progress.

My d had smoothies and a hi cal ice cream drink from soon after we began refeeding at 10 yo until 11 1/2 then we stopped it as it wasn't needed-- then. To parents who have a child who has not yet completed puberty and height growth and you have them drinking a daily shake or smoothie, my strong advice is not to let them stop it. It is hard to reestablish and I think it is incredibly hard for our kids to get in enough cals to grow through puberty so we need the best tools to do that.

And as puddleduck noted elsewhere when they get taller and their weight doesn't track upward the ED symptoms seem to zoom back.

Do ED treatment providers agree that happens? If they do, they should be modifying what they are telling parents to do. It makes NO SENSE to me to return eating control to kids who need to complete pubertal growth and simply can't do it without major support. I know everyone is still figuring out how to treat people who fall ill very young and this huge difficulty with keeping up with height growth seems a common feature.
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ed_newbie
Great thread for a bit of comic relief and much needed motivation to get d into a daily shake or smoothie to get her through puberty over the next few years. I believe my d still has many inches to grow so I feel like we need a routine of sorts to rely on.

"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

15 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and pushing our way through puberty and rapid growth.
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sk8r31
Oh momon....my h and I had a saying when we were in the thick of ED struggles..."We could lose a battle, but not the war".

Sounds like you lost one battle, but are right back at it!  Amazing the power of a united parental front.  You guys have 'got this'.

Really hoping that the shake struggles lessen with every new day.  And you are quite right that fueling for puberty is tough stuff...better to hold the reins for a while longer, til you are through this growth spurt.

Sending warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Colleen
Momon, you are killing it!

It's crazy what we have to take as progress with this blasted illness. "Shakemageddon - now with 80% less freak out!" It's a terrible thing to count as progress the kind of behavior most parents never see. Show me the parent who is pleased that her child only screamed and swore for 20 minutes when presented with a delicious shake...! Good thing we have each other here or we would go nuts for sure! We get it!

As far as relying on what professionals know about refeeding through puberty - I don't think they know, frankly. I think that, as usual, they apply adult treatment and scale it down. Even adolescent treatment isn't 100% relevant. What 10 or 12-year-old needs to have control over what they eat? I don't think they understand the metabolic requirements of the pubertal growth spurt combined with the additional complications of recovery from ED or they would never talk about backing off the calories or 'hitting a target weight.'

Honestly I think parents here are figuring it out. Feed, feed, feed!

A giant WOOOHOOOOOO to you and h being on the same page! A united front against ED!

Another giant WOOOT to keeping your sense of humor through all this!

You are a superhero!
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Torie
momon wrote:
We shoulda sent my daughter in to negotiate with Iran, she would have come back with Ayatollah Khameini's turban along with the uranium.


That is just too funny. I have to take my hat off to you that you can keep up your sense of humor amid the madness.

So glad to hear you and your h are back on the same page. Three gold stars for you both. (After maybe a bit of a thump on the head for him previously.)

xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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momon
Thank you guys. So much. I appreciate the kind support from people who know what this thing is.  As someone else said on another thread, it is a rife moment lately when anyone casually asks me "how are you?"

Day 4-- got the shake in. This time,  only about 5 minutes of profanity... then she disappeared. At 8 in the evening. For about 20 minutes. we thought she'd run away but she had just found a really excellent hiding place in the house.  I was searching for her outside and saying loudly that I was going to execute her chickens one by one if she didn't come out. This is how warped the situation is, when we found her I was pretty much only relieved because then she had her shake without much more fuss. My how my standards for child conduct have dropped.

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Sotired
Oh I hear you....
Sotired42
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momon
We continue on with The Shake Plan.  D continues to cause some havoc around shake time to get it in but it is going in.

The harder part is that she is getting WAY ANGRIER with us, especially with me and it's not confined to eating times. I picked her up tonight from an event and she laid into me, saying over and over how I have ruined her life and I am the worst mother in the world.  It was hard to recover my composure to get out of the car and go in and make dinner. But I did. And I got a full half cup of butter into the vegetables;  d complimented me on the tasty dinner then said, "and I hate you." (the life changing magic of eating up will be evident soon maybe. [wink])

I hope  this is extinction burst but I do not think we are that close to wiping ED out.   I think this is just ED fighting back. IN which case I am going to need to find a way to be glad that ED is being so disturbed that it is fighting back, because wow this hurts.  I think this means that  my instincts that we were leaving my d slightly below ideal weight and thus leaving ED in place and accommodating ED were right. Else ED wouldn't be so livid now. Does that make sense? It's still hard because before we got serious about pushing for more weight gain, d seemed pretty happy and I saw only hints of restriction.  But I think-- but am not sure-- that her reactions do indeed show ED was in control. Though in her version of the world, it is more a case of munchausen's and I'm the muncher.

It doesn't help that her pediatrician told her at annual well child check last week "you are on your growth curve, good job." Not sure D even heard it, but it shook my confidence in  the need for d to gain. It's hard not to wonder, a little bit, whether I am putting her and us through all this misery and it's not necessary.  

AAK!
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schnook
Congrats on getting those shakes in! IMHO the resistance and the misery only prove how necessary they are.

Don't beat yourself up. You wouldn't be taking on this gawdawful fight if it weren't vital to your child's wellbeing - none of us would!

I really admire the work you're doing. I hope your poor wee d gets some relief soon, as the ed is banished once again.
Working hard at meal support and WR for an anxious and food avoidant 6yo
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momon

Wow, I can't make any more jokes now.   We are getting d to have her shake and a good mid day snack, but her expressions of rage and distress are intense and happening repeatedly in the day, whenever I pick her up from something, she goes off on me. She had a miserable thrashing around rage crying misery fit that went on for an hour at and after bedtime. It was not as intense as in initial refeeding, but similar. Scary, because during refeeding evenings were so bad for her it made us put her on a psych med.

Hopefully it will pass. It's hard because when she says she was happy and fine a month ago, well that's not completely wrong. But her weight gain was stalled at a bit too low, and there were little "tells" that the ED was still operant, like she could eat a dessert one night but never the following night. 

Why is she suffering so badly now? And I can't stand that when she says I am making her suffer for no reason one part of me doubts what we are doing.  I hope this gets better soon, it is so painful for her (and all of us.)  

I keep saying "if you are getting flak that means you are over the target." That helps. It's still true, right?

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mumto3
You are definitely over the target.  Any way you could get someone else to pick her up?  Just to break the cycle?  A neighbor, someone who offered to help, another mom?
Or have her bring a friend with her for a bit?

Keep going, it is not wrong to feed your child.
worried mom
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sk8r31
SO sorry that you are still having to endure the rages and nasty comments....I think you are 100% correct that you are over the target & getting flak.

It hurts so much to see & hear our formerly loving & sweet kids turn into snarling Tasmanian devils!  

All I can say, being out the other side now, is that you WILL see that lovely sweet kid again...and hopefully sooner rather than later.

Perhaps there's a bit of extinction burst...perhaps the teen hormones are coming into play as well (as an aside, my teen son regularly told me I was 'an idiot' for a couple of years, and he didn't have ED!).  Either way, it is painful as hell.

Try as best as you can to let this roll off your back, and to remember it's ED talking.  And give yourself as much of a break as you can...sotired's idea of having someone else pick up your d after school/activities sounds good.

How does h handle the rages?  Is he able to take over more of the tough stuff right now?  A massage & a glass of wine sound like they should be on your schedule soon!

Sending hugs,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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