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

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Scaredmom2019
13 weeks PHP. Started well but over last couple weeks backsliding. No longer able to finish meals (could for first two months). Now "involuntary" vomiting a few times per week. Lots of depression and anxiety. Seems we've reached our maximum benefit from PHP. 

What next? Residential? Different ED clinic? UCSD program?

17 year old D with RAN. 

Thank you. Not sure where to turn next.
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Torie
I would call UCSD or CBL (Ohio) and ask if they think your family is a good fit for their weeklong intensive program.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Scaredmom2019
Thank you Torie. Im well read on FBT and on this lovely site. Is UCSD going to be different or more helpful than her PHP with Emily Program (also a highly respected ED program). I just dont want to repeat if it will likely be similar. 

Thank you!!
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Torie
Hi Scaredmom2019,  I'm not a great person to answer that question, but I'm sure others here can do better.  My impression of UCSD weeklong is that the parents eat a good number of meals with the kids so that the pros can offer tips and ideas; I guess I assumed that didn't happen with your PHP?  They are also famous for helping craft a contract - I have no idea if that would be helpful for you or not.  Finally, they would be a different set of eyes and minds to try to sort out the vomiting. 

I don't know if it would be much different or better or not.  I just said that in your shoes, I think I would call them to see if they think they are a good fit.  I think they can help you figure that out, if you are interested. xx

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

I am just wondering why she may be backsliding. Here we talk about extinction burst where behaviours/moods and resistance increases near WR. Or has there been another stressor that may need to be addressed? 

I can’t answer whether another program may help or not. The current food behaviours need to be addressed again as you did before, IMO. 

do you still have a team in place and what do they feel needs to happen. There are hills and valleys with ED. It sometimes just takes some time to regroup and step up our efforts as stretched as they already are to move forward again. 

Is she still gaining? Does she need more weight?
is she on meds for the anxiety I am sorry I do not recall. 

 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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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Scaredmom2019
That's interesting. I do think we started sliding (cant finish meals, involuntary vomiting, anxiety) right around WR. These issues rose after 18 lbs to WR (or close). 
She hasnt been weighed in two weeks but I would guess she may have lost a pound or two. I can see it. 
We tried SSRI meds and both made her pretty hyper (like not normal at all - scary)..so we are not doing meds right now but I REALLY think we need this piece. Im terrified to try more meds after a scary reaction. The doctor suggested we could try Buspar -not a SSRI, but I am scared of that too. Maybe I need to have her try it? 
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Enn

Oh, yes, I do recall that scary time with the meds! Maybe just keep up the feeding and regular expectations she will finish it all, all the time, for now. Give it a few weeks and then reevaluate? 

 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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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debra18
I don't know if this is the case but with my daughter things got worse before they got better. She was cooperative at the beginning of refeeding and than all the ED behaviors started after some time including hiding food, spitting, etc. Maybe she is starting to see what she can get away with? 
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Foodsupport_AUS
Scaredmom2019 I am a little confused, as from your previous posts I had thought that you had already taken her out of the PHP program from your other posts. Your most recent post actually says to me that she should be staying in the program. It is really common for there to be a peak in anxiety, distress, and weight focus around the time of weight restoration or a bit before. Often an increase in resistance too. Many parents have found that they really needed to push through that and then it all settled. I wonder if that is the point at which you are at? 

The programs at UCSD and CBL on paper sound very different to what your D has been doing so far. I have not done either but for a while had seriously considered bringing my D to the US for the programs. They are focus is on joint programs with caregivers and the person with ED. There is lots of work done on teaching you how to support them and focus on teaching strategies for the longer term including contracts. There is an expectation that people will then go back to their current support teams to continue the work done in the intensive week. As such it is not a "treatment" it is an aid to treatment. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Scaredmom2019
Thank you for the feedback!!

So she is done with PHP and has stepped down to IOP - 4 nights/3 hours. We haven't gone in a week as we ALL needed a break.
She will be going back on Thursday - they said if not there they will discharge her completely...so we will be there! 

I do think we have hit that WR anxiety. That all makes sense. Good to know this. She swears up and down that she doesnt make herself ill...and I believe that. We both agree that it is anxiety manifesting itself. We have agreed to take meals a little longer if needed to avoid getting ill...also that we can substitute ensure if needed and that it is not a failure. She is so afraid of letting me down or causing me stress. I told her honesty will not stress me out!! Then we can problem solve. She really is so dear!

And no significant weight gain issues or body image concerns. Remains that food makes her feel sick....this has been present since she in elementary. We just are not a classic AN case as I really believe we have more ARFID issues that have been present for many many years. This may be why PHP isnt the best fit. She tells me that no one else has the same stomach issues that she has..."eating causes instant pooping and many times". This has been her mantra since age 5. Avoid food; avoid stomach distress and pooping in public. 
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Torie
We tried SSRI meds and both made her pretty hyper (like not normal at all - scary)..so we are not doing meds right now but I REALLY think we need this piece. Im terrified to try more meds after a scary reaction. The doctor suggested we could try Buspar -not a SSRI, but I am scared of that too. Maybe I need to have her try it? 

My d also had a scary reaction to the SSRI she tried.  I wonder if they have considered olanzapine?  

We are another of the many families who had an uptick in difficulty shortly before wr.  

I like your idea of letting meals take longer or maybe splitting them into two parts to decrease the volume at any one time xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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MKR
I agree, the time around regaining the pre-ED weight and moving beyond was particularly dramatic. For us about 4 months into refeeding, at a steady 500g a week, we saw the worst reactions.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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ValentinaGermania
She swears up and down that she doesnt make herself ill...and I believe that. 


I do not want to be the guy with the bad news but my d sweared up and down that she ate at her friends house and she did not eat anything there.
I know a lot of parents whos kids swore that they do not make themselves sick and that found out later that they vomited secretly into hidden boxes or out or the window.

I personally would not trust ED. Never. If there is no medical reason for vomitting, it is ED. It is a great excuse to say "anxiety makes me vomit"...
Keep feeding. There is light at the end of the tunnel.
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Scaredmom2019
I dont disagree with the lying at all! The only thing is she is actually totally honest about the eating too. She will tell me that she didnt eat, couldn't eat etc... she really doesnt lie about any of it. I can say did you eat dinner at your friends as we agreed and she will say she didnt - if she didn't. 
Also I have seen her vomit "involuntarily" in front of me. Do i think it is ED? Yes but not entirely. I think anxiety can do crazy things to a body - pass out, heart palpitations, and even vomit. So I believe her for the most part - not entirely. I do think anxiety can make someone vomit. Her anxiety is so high, always has been since a young child. Her first anxiety related body issue was in at age 5. She had to urinate literally every minute forever. She was diagnosed with some type of childhood urinary frequency disorder. It was awful. Her anxiety has always manifested in some somatic manner. For years it was then pooping too much which started the food restriction... this was age 8 until now.
Im not excusing the vomiting as she has even told me she can control it to an extent...we both believe it is anxiety related but indeed perhaps related to her ED..she just doesnt have the body image stuff..she doesn't Express concerns about her weight etc. She hates food and it makes her feel sick. I tend to believe it is a little more on the ARFID scale.
Dont get me wrong...I dont trust ED. At all. Ever. But I do go through her room etc everyday looking for evidence (and she is REALLY sloppy) and there's nothing. I mean she even leaves condom wrappers on her floor .... ugh!! She is almost 18 and has a boyfriend but she is soooo messy. She cant hide things from me even when she "tries"..
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Scaredmom2019
I will add that her and I working together to stop the vomiting. She.is terrified that she will puke at a dinner table.one day with people..we are working to train her body and brain that vomiting is not an option. I'm watching her like a hawk and we're tackling the nausea head on. I do believe she doesn't "want" to vomit. Poor thing gags through most of our meals once she feels full.
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Enn

Scaredmom2019,
You do know your d best. Your d has had a very difficult childhood with her anxiety. I do feel that anxiety manifests in so many ways. 

You and your d do seem to be aligned in moving forward together. 

what does your team feel about ARFID? 

Do they have any suggestions about the vomiting? I think I recall your d was to see a GI specialist? How did that go.

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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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ValentinaGermania
Did you already try to offer her an incentive or even pay her for keeping the food in at one meal? It would be interesting to see if that works...
My brother had a tick with hand washing when he was age 7-8 and my parents paid him with Lego every time he did NOT wash his hands.
Lego is no option there at age 17, I know 😂 but maybe there is something other she is really keen on? We payed our d with driving lessons...

Did you already try meds against anxiety?
Some had great success with canabis oil to calm them down I think I can remember...I do not know if it is available there.
Keep feeding. There is light at the end of the tunnel.
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Torie
Scaredmom2019, my d occasionally experiences involuntary vomiting.  This NEVER happened before ED, and I am nearly positive she has never intentionally made herself vomit.  So the good news is that there is some company on this.  The bad news is that we never figured out a solution.

For my d, it isn't / wasn't so much associated with eating as with other stress - generally a school test or perhaps a social event.  (She does still have an anxiety disorder.)   In her case, it is only a small amount of vomit - nothing near 1/2 meal or anything.  I don't know if that is true for your girl or not.

Another difference, I think, is that it comes on very slowly with my girl.  First she feels nauseated and only quite a bit later does she actually vomit.  When possible, she stops what she's doing and takes a nap, which usually fixes it, at least mostly.

We have never been able to tame the anxiety monster - I think that's what would help the most.  We never did DBT, which is what I think would have the best chance.  So she carries on and lives with it.  

I wonder what would happen if you basically ignored it.  Maybe that's what you are already doing?  "Oops, that's annoying ... oh well, you will just need to have another milkshake in a while" type of thing.

Best of luck and do keep us posted. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Scaredmom2019
Just wanted to update as I find all feedback helpful so I want to share accordingly.

Seems the step down from PHP to IOP has been good. D is eating well with me at lunch eveyday and snack (both she was doing at PHP along with dinner). She is now doing dinner only at IOP. Her mood seems way way better. She seems happier and light. Even humming at times 🙂 

Im anxious to see how we have held up in the weight area-havent weighed yet but will on thursday at IOP. She looks good and clothes still fitting snuggly (the new bigger ones). 

However overall I think the day building a life worth living is going well. Shes eating for me though she does admit that she is making "healthy" choices when possible (but luckily im still providing MY food and supervising). She does have some hunger cues returning though. Today she came.home. from hungry from school and asked for lunch right away. If i havent served late night snack she will actually ask me if it is snack time!
Last night she woke in middle of night to eat some sugar snacks. So we will keep feeding more and more at home and I told her I am happy to provide her with a snack jar in her room for late night munchies. Also it shows me she is still hungry so bigger late night snack!! 

Im trying to remain level headed as I know we will encounter bumps but am so grateful for the slight reprieve from madness and absolute fear.
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Torie
Wow, that sounds great!!  Thanks for the happy report! xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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greekdude
Hello my S takes a combo of Fluoxetine hydrochlorid and Risperidone and he is under-active, after lunch he goes to bed.
PS

Great news @Scaredmom2019 !! congrats!
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ValentinaGermania

However overall I think the day building a life worth living is going well. Shes eating for me though she does admit that she is making "healthy" choices when possible (but luckily im still providing MY food and supervising). She does have some hunger cues returning though. Today she came.home. from hungry from school and asked for lunch right away. If i havent served late night snack she will actually ask me if it is snack time!
Last night she woke in middle of night to eat some sugar snacks. So we will keep feeding more and more at home and I told her I am happy to provide her with a snack jar in her room for late night munchies. Also it shows me she is still hungry so bigger late night snack!! 


That all sounds really great! 👍
Keep feeding. There is light at the end of the tunnel.
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