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

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Lovemygirl

Hello all.   First off, it’s a looooong read so thank you for that !  

My husband and I are kind of reaching a crossroads here.   We are confused , scared of making the wrong choice and overwhelmed with this emotional rollercoaster that we are on.  You are all so kind and compassionate and you all understand !  You get it !  

Short story , D15 lost about 38lbs from Feb 2019 dr appt to October 2019. She was hospitalised for a week due to orthostatic HR.  Fully complied with meals during hospital stay and went straight back to school with supervised lunches and snack.   We tried therapy ( 2 different therapists ) which really just made her upset as she felt none listened to her nor had any empathy.  ( I agree with her on this   ) 

Gained weight , had some restrictions lifted such as snack with her friends , then lunch with her friends ( only about 1/2 weeks ) and participated in a track practise 2x a week, which to be perfectly honest was not about exercising, and was more about the social part of HS. 
At this point she started to make her own meals.  Really just breakfast and was eating everything else that I provided.  

Then Covid hit and school was online.  She started getting up late and not coming down for breakfast and had an weight check , weight was fine but she was orthostatic and met criteria for Hospitalisation, but they sent her home. I have no idea why.    

She did very well eating and her HR was restored at the next week appt .
They told her that she was doing really well medically and everything was great.  I mentioned ( not for the first time ) that I think she could use more weight , and then went back to D and told her actually she needs to gain weight.  This was super confusing to her.  


Two weeks after that she had lost 4lbs, which we were all shocked by.  They suggested purging and exercising but we don’t see that happening at all   We are very aware of her every movement throughout the house and were on high alert for anything amiss   

Fast forward 3 weeks till today and she is doing really well.  Holding her own again medically and weight wise.  

The clinic are not ok that she’s not engaging in therapy / nutrition appointments and said  to Husband and I that they cannot continue with us as we need to engage in therapy and nutrition appt even if D does not.  

They also told us they have a spot for her on Wednesday at a Partial programme.  Heavy on therapy.  

 

So here is the crossroads .  Whilst  we are grateful for the help that the clinic gave us , we feel that they dropped the  ball a few times for us.   

We also understand their medical model that they follow but there is no
thinking outside the box for us.  And we know our daughter best.  


So we are at a crossroads.  
Whilst the PHP is a great programme, and has helped
many children , we feel like the therapy part ( which is a huge part of it ) would not be helpful for her at all.  We know the kind of person our D is and we feel like it has the propensity to snow ball and push her over the edge, so to speak.  Nothing bad , just too much.    She has major trust issues and issues that people aren’t honest with her.  And I agree with that.  I have caused some of it unfortunately.  

After clinic today she really opened up about how she has been feeling   Keep in mind she knows nothing of what may happen next week with possible PHP. 

Husband and I have been literally sick over what to do about this.  

We think that we should give her 2 options and involve her in her care.  

1. PHP 

2. Basically do it on our own    
Lay down firm guidelines ... Eat what we provide , engage in therapy , have weight / Ortho checks at paediatrician office.  If it is not followed then PHP is a back up , and she knows we are serious.   We had a bumpy road in order to get her into Hospital  in October.   We are not in denial about our journey thus far. We really feel like there is a different way through this for us , it may not for all. 


We feel like she deserves to be heard and to have our trust and openness in this. Trust in this is
big for us, without that everything else falls apart.   

What do you guys think ?  

 

 

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Enn

I think you know your situation best and all the options that are available. One big lesson I learned here from just reading different journeys is that there truly ARE different ways to get through this. 

Sending my best. 

 

 

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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PleaseEAT

Hi and welcome 
I’m not sure I understand your post correctly 
so your d lost17kg? (We work in kg here)
and she has gained ALL this back?
if so, GREAT effort there!  we all know how hard getting the weight on is (understatement of the decade/century)
you sound like you think you know your d and I totally understand that
my d and myself had a VERY close relationship before ED came to visit(and we still do)
The trouble  is ED makes them lie and even though you think you can trust and believe what your d tells you, you can’t! You just can’t 
we got all the weight on our d in6 months and we though “great on with life we go, we are over this” and before our very eyes she managed to loose all we weight plus more and ended up very sick and hospitalised and 4 years on we are just coming up for air
im not suggesting this will be the case for your family but I just want to warn  you how sneaky this illness can be 
IMO I would be taking all the support and expert help you can get (it gets harder as they get older)
we stopped all professional help after my d was WR the first time as she claimed it wasn’t helping and we believed her (therapy isn’t easy and appointments are a pain in the backside BUT it keeps them honest and it can take considerable stress of you knowing you have help/support) yes appointments upset them as the t is challenging the ED
my d is 21 now and lost 4 years of her life
anyway just my 2 cents, you will make your own decision on how best to treat your d if you go it alone I wish you all the are strength in the world

 there is so much great information and support on the site ask all the questions you have always someone willing to share experiences
what ever you decide I wish you and your d well 
all the best 

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Foodsupport_AUS
As pleaseeat has mentioned, great job if your D has regained all that weight and some more. She really does need to continue to be gaining into adulthood. 

It is normal to feel some anxiety about deciding which way to move forward, sometimes it feels as though if we jump one way we can't change back. 

I think the real question is to decide for yourself is what role do you see in having therapy for your daughter. Some kids like my daughter had severe depression, anxiety and poor self esteem all of which needed to be dealt with at the same time as ED. Others the eating is the issue and the only issue. Many others fall somewhere in between. 
For the group where eating is the only issue - I am dubious there is any particular role for therapy. 
For the other group it really depends on what needs to happen, the timing can be very varied. 

For your daughter how do they see that a PHP would help her? Why do you need to engage with therapy and nutrition. For nutrition the implication is that you don't know how to feed your child, something most of the world does very well without a nutritionist. This makes it unnecessary for many but can be a great way forward if people are struggling with how to change things around. 
As for the therapy - what is to be gained from this? To me therapy is learning new skills. understanding why we think or behave a certain way, learning how to change your own thoughts and behaviours. Your daughter may or may not need this. There is probably no time limit on when this needs to be done, the higher the level of distress she has the more she may need it. 

You don't have to stick with your decision if you feel things are not going well. 
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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MKR
Hi @Lovemygirl,

I think, if you can afford it timewise, you and your husband can carry on with the therapy, provided the therapists supports you and offers strategies and scientific explanations (as one of our therapists did). That would also mean that your role at home would be more intense, with closer supervision, and potentally you would be the bad cop.

Follow your instinct  but the more weight your daughter can put on now, the better.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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teecee

I hear a lot of positives in the tone of your post. Caring at home does not phase you and you are confident you know what she needs and how to do it. If this is the case I would say go for it. 

We did all the care at home with a little support from outside interventions and CAHMS disengaged after 5 months as we had managed to get 16kg on through the refeeding process. 

After that it was a case of managing her through the ups and downs. Therapists were not a good fit for our D but then we found EMDR and a Clinical Pschologist with a good reputation who my D instantly connected with. For the first time ever in our 2 year journey we feel full recovery is here. The next phase for us will be supporting her living an independent life and watching our for any issues which may cause challenges for her. 

Whatever you choose remember support comes in all shapes and sizes. This online support has been valuable for us...much more valuable than the physical support we got from some quarters. 

Good luck. You know what’s right for your family. X

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Lovemygirl
Enn wrote:

I think you know your situation best and all the options that are available. One big lesson I learned here from just reading different journeys is that there truly ARE different ways to get through this. 

Sending my best. 

 

Thank you Enn. Whilst I do agree that I do know my D best , we are terrified of making a wrong choice.   Of being blinded by ED.   

Of it coming back bigger and badder than before.   I think the trick is finding a therapist that will help us through this, without being intense and rigid in their thinking. 

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Enn

I get what  you have noted above. However, if until you try something, you cannot know what is best. I think that is the hardest part with ED. How do we really truly know that what we try will work?
Having plans ready for different eventualities can help. That way if A does not work well, there is always a plan B. We needed, or rather I needed a team to bounce things off of, it was more for me, tbh. Others did not or could not find the right fit when it came to a team. 
🌸

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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Enn
Ps I like what Foodsupport  has reminded us above. You can always change your mind. That also was a big lesson for me. I thought once I ‘picked’ a certain way’ I had to follow through 100%. Just like other decisions in life, we can choose another way to do things. Different situations and different times we choose the best in that moment based on more experience and knowledge.
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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teecee
ED does try it’s best to scare us but Enn is right...we have to try something to find out what works. There’s no right or wrong only feedback...not failure. As long as you keep the focus at the forefront of your mind ie. Food is medicine and everything in moderation then you will do recovery ‘right.’
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Torie
Lovemygirl wrote:
weight was fine but she was orthostatic....Two weeks after that she had lost 4lbs, 

Any chance she is tricking the scale?

Other than that, it sounds like she/you are doing great.  Not sure what the professionals would be adding if you stayed on with them so also not sure I can provide helpful input there.

Keep up the good work! xx

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

Any chance she is tricking the scale?


-Torie



@Torie.  What do you mean by tricking the scale ? Purging ? Adding extra weights to clothing? Or something else ? Thanks
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Torie
Adding weights to clothes or tying them in hair, drinking a bunch of water, whatever artificially raises weight for a brief period of time. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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PleaseEAT
My d put weights in her shoes so be sure to take shoes off for weigh ins and once my d was admitted to hospital she had to undress completely no knickers, bra/singlet or shoes and socks only a gown was worn
this was the kid who was honest, trustworthy, responsible, trusted and  hardworking  
this was not in her character at all
this is what ED can do to your child 🙁
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Milleh

For starters, let me just say what a great job you are doing!!!!  Your story almost mirrors ours to a T!  Our 15 year old D lost 35 lb from July to October 2019.  She too was hospitalized after her orthostatics were dangerous.  She refused to do the ED inpatient program. She was willing to eat the meals, but didn’t want to eat with others and refused to do therapy and group sessions, so they kicked her out.  We tried doing fbt at home without much success. She was hospitalized again because of orthostatics and we tried the inpatient program ... again. And again... she refused to participate and was kicked out a second time.   We were desperate because she lashed out all the time (we knew it was the ED talking) and she had many thoughts of self harm and taking her own life because she felt like such a burden and that we’d be better off without her. We were lucky to find a therapist that she sort of liked, and that helped tremendously to journal what her thoughts were each day and talk about it. But that wore off after 2 months. 

From day one, our D kept saying she wanted to beat AN but on HER terms. We were supportive the best way we knew how, but in the end... you do what works for you. She has been fully weight restored since the beginning of April and is now actually struggling with binge eating, but we trust that she will self regulate. 

I can say from personal experience... there is a huge gray area as far as what will work for your family. We had every doctor, therapist, nutritionist and online forum saying that an inpatient program is the way to go, that therapy is a must, that fbt is the only thing that works, that she shouldn’t have a say over anything she consumes, that she shouldn’t participate in preparing meals etc etc etc.   None of that worked for us!  We had some very low days where I cried and cried and cried wondering if we would ever crawl out of the hole we were in, would there ever be a turn, or success??? And I’m here to say yes!  Try to be patient, talk with your D about what would help. My D made a list of what meals were for the week so she could cross it off as she went. She had input over what sounded good for dinner on some days. If she wanted nothing but ice cream for all three meals, we let her do it and rejoiced in the much needed calcium.  She absolutely hated “food is your medicine” so we didn’t say that. It has self regulated and she eats from all food groups now.  She still refuses to see a therapist, but she does keep up with the journaling, although now it’s about things that make her happy, music and positive quotes or thoughts.  She still has body dismorphia and doesn’t like how she looks because when she weight restored... it all went to her tummy and thighs, but that too will even out over time.  Do not get me wrong, I know that the programs and therapists and doctors and nutritionists are wonderful and life saving for a lot of families.  I glad there are so many resources out there, including this site.   You will find the right combination to help your daughter recover! 

Stay strong!  You are doing the best that you can and we all support you on this journey!  Have faith!  

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deenl
One way that our son tried to trick the scales was to water load. He drank lots of water and did not pee. Signs that this might be going on are unexpected fluctuations in weight, trips to the loo before the appointment to drink or somewhere else where drinking water in secret can be done and going to the loo very soon after appointments. My son is very scientific and knew the weight of water so tried to balance everything out but, of course, the human body is far more complex than that. Hence, the fluctuations in weight even though food and movement were pretty constant. A slow, more steady loss usually meant it was time to bump up calories again. 

Just a few tips to keep you informed as you make your decision.

I used to do scenario planning to help settle my nerves - best case scenario, worst case scenario and most likely scenario. I would have a plan and usually a backup plan for these cases. We did not always follow the plans because ED is likely to throw a few spanners in the works but I had enough thinking done before to enable us to relatively calmly pick and choose the path forward from the various scenarios. I used to say I had plan A., B and C and often ended up using Plan FFS or Plan WTF!

Warm wishes,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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Lovemygirl

Thank you all for your responses.   

I have had many long talks with D.  We are both in a better place of understanding each other and are making baby steps. 

We will be checking in with our Pediatrician to do weight checks, Ortho checks, urine and anything else I am missing ?   Please let me know what to ask for.   I do know that their scales are in a public area of the office, so not sure how we will do weight checks.  I will have to ask them how they will handle that, getting totally undressed in a Jonny and then have her walk through the public office area to step on the scale !  


Our hope is to find a great therapist down the road so that she can at least have somewhere to process all that has happened.  


Again thank you for all your insights.   

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