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

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strugglingthrough
My D is almost 18, we hope we caught the AN early and thanks to the excellent advice on this site managed to stabilise her weight loss while waiting for an appointment with the psychiatrist. Also managed weight gain in initial weeks using magic plate and other guidance from here while there was an additional weight for the dietician.

We also have an individual therapist for D and a family therapist.

We are in the UK - going privately as we are so worried about D becoming 18 soon and all the changes that brings - but beginning to think CAHMS may be better.


D is close to "target weight" - more on that below - after a few stalls and hiccups but has done so very well. But now stalled and D determined not to put on another gram.

So talking each.

1. Famiily Therapist

So we have a family therapist who seems to be doing therapy not FBT - she seemed to come on to FBT for one session after several sessions of family therapy being a "talking space". We told her we had read the Lock/Le Grange manual for therapists.

We are in grid lock. D has done so well in gaining weight and is only maybe 2kg off an initial pause point to see if it is enough.

We hoped the FT would help unlock grid lock in the recent appointment.

But it was pretty grim and felt like setting D against H and me. Huge amounts from FT on control and how D wanted control (not ED) and continuing to put on weight was Ds choice. Lots on difficulties of a teen giving control to her parents and us having control over D.

We don't. It's an illness. We don't want control either - just a healthy D who is a young adult, heading to university and finding her way in a fulfilled and happy life. But we are taking control of food and exercise at the moment and supervising after meals - we have only stepped forward again into a more active parent role as she is ill.

I dont see it as win lose (unless lose is ED ) which is how the FT seems to portray it - albeit it could be lose lose but that we are looking for win win. Also


I did say in FT that my understanding was that while anorexic it was difficult to expect D to choose.

She also made some comments that were clearly wrong - had she know the facts - but I couldn't correct in front of D without making things look even more disjointed.

Sessions weekly but we need to review.

2) Individual Therapist (IT)

Won't talk to us even for a briefing. In fact she didn't even introduce herself to us when - on a particularly bad day of first session and wanting to give more support to D and at least eyeball this T - we were in the waiting area when she called D in.

D says little about the sessions - when she does clearly we only hear D's interpretation on what she has been told. Including can't work on depression till everyone stops pressuring her to gain weight.

We tried emailing her one day - one para. - when D was particularly upset - and got a polite don't talk to me, talk to GP or Psychiatrist reply.

She does seem to be helping but has very limited background info other than a briefing from the psych - initially and then every 2 weeks post psych appointments.

These sessions are currently weekly.

3) Nutritionist

N sees D before us, then me or H, then sometime that it is it or sometimes see then sees us both.

Early on she gave D a weight range - it was lower than H or I thought from albeit limited history and reading here.

N gave D the range and then explained to me afterwards that to stay within the range, she expected D to be go to the midpoint and then vary within the range. I wasn't there but I am sure N explained the range and mid point to D but D only heard the bottom number.

I was a little surprised, Queried the measurements. Decided not to argue about a kg and take the "see what happens when we get there" approach.

I did ask her to check the height.

Also, she makes no adjustment for clothes - jeans way more than tiny skirt (at least 0.5kg difference) and yet she measures to nearest 100g? She thinks it is unnecessary to adjust for clothes - I would agree if looking for a trend in kgs and the weight range and historic weights, BMIs etc were also in jeans etc but she measures to 100g and is quite rigid.

She said weight gain 0.5-1kg a week max (per week, not average I found out later) and 3,000 calories was her advice on max required.

Lower weight gain (no weight gain?) better than more calories?

D was always slim and active and ate lots - much more than her siblings - and just burned it off.

More weight gain - even on an isolated week is too scary for D and to be avoided per N. (Don't know if she was told that by N too but she didn't refer to it until after N said it to me? But any gain is scary for D.)

When as a one off - after almost no gain and followed by v low gain - D gained more than a kg she advised me to cut back calories.

(Perhaps stupidly, I said not convinced as it's an average, she is eating well with her siblings and meals are getting much easier. N seemed to be very annoyed)

N pointed out her jeans fit as evidence it was going too quickly (below bottom of target at this time) and I said interesting given he is at least 5 kg off when she bought them likely more. N then explained that weight goes round the tummy first and would redistribute.

D wants to be "normal" now and for it all to end, not snack, no puds, water only as drinks - and I totally get that but yet. If she had kept gaining she would have been there by now but she is more resistant than she has been for weeks. Behaviours worse. Relationships shot and I feel this is exacerbated by "the team" not helped by it.

D was and is totally fixated on the low point of the range and sees it as a maximum. (Not unusual I think?)

So D is hovering around it, just below it and will not move.

But her State is far from normal, anorexic behaviours very evident.

I have no idea what N said to D.

FT referred in last weeks session to the fact that I did not agree with N's target!!! (I think it's a kg off and will wait and see what happens if we ever get there. H think it likely needs to be higher still.)

N also said we should have an abdominal ultrasound once at target weight - then regularly - we then asked Psychiatrist later who said no, not yet, it can take ages for menstruation to resume.

Should N be suggesting medical tests?

I did not tell D I disagreed with N. I did say the bottom end of the range was not a target but a minimum. Also that I would check whether an abdominal scan was required with the Psych and, if so, when required as Psych was a medic and could do the referral.

D tells me N has also moved her weight target due to remeasuring height.

Think mid point has moved by 1/2kg and now pretty much the same as mine - H taking wait and see approach as he thinks weight likely ultimately will need to be higher than N's target for D to recover.


4) Psychiatrist

So far seems ok. We had a few weeks of D first then we would go in to hear the plan, it didn't work that way as we then had to give update which meant plan redrawn which was demotivating and confusing for D and caused unnecessary tension on our relationship with D.

Now we go in first, then D then together. It works, P is getting to know D and seems ok..

But P is the hub. All comms through her to IT. IT, FT and D report back to her. We tell her and she briefs them.

But she sees D for less than an hour every 2 weeks.

Also, there is the children game of whispers? This happens even with professionals !

So to H and to me it feels like we have a dysfunctional, triangulated team, poor lines of communication, ED is definitely disseminating and into "divide and conquer". We are not portraying a united front to D nor are we giving a coordinated and consistent message.

And indeed we as parents do not feel we are receiving a coordinated and consistent message. We don't want a "talking space" with FT - we want someone to guide us though and help educate us.

We do not want to know all that is said to IT - D undoubtedly has areas which she will work on with IT alone - but we would like the ability to share information with her that we consider relevant, and which D may not be sharing. IT could consider and discard. I would also like to hear from IT if there is anything we can do differently to support D - anything we can do more of? Less of?

I think we have trust in P, FT is not doing FBT, we need to have a conversation with N and work as a team but she is very much "the expert" and feels to me like she will not listen so it feels very them/us. - no team work, she instructs we do and get told off if we even try to debate anything. Also we're not really clear what her role is on a weekly basis ?

IT we know nothing about but are happy for now to wait and see for a little how it develops and whether working for D
but very worried about lack of comms and shut door approach. Surely she can talk without breaching confidentiality?

D might have signed a waiver before if asked but not now - we were a team and she was still communicating but now not which is grim..

H and I are wth D day in, day out and yet we are excluded from most comms, the children's whispers game is ongoing via the psych - regardless of best efforts, it must be.

There will be a MDT meeting but we heard only via D (who has never heard of this type of review before.)

When there was an MDT meeting for a family member's cancer - the patient and family were included. The lead consultant shared info, treatment decisions, risks etc on an ongoing basis.. Not for AN apparently.

How to move forward?


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strugglingthrough
Really sorry that it was such a long post but would very much appreciate advice on how to get things back on track and help our D. She has worked so hard on this.
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Torie
strugglingthrough wrote:
So to H and to me it feels like we have a dysfunctional, triangulated team


Oh my, yes. I think that sums it up well.

I found that no help at all was better than the "professional help" I found for my d ... and it sounds like my unhelpful help was several steps better than the counterproductive, dysfunctional lot you describe. Yikes.

Run! That's what I would do. Are there any other choices of providers for you? 

The brightest spot I see in your message is that you and your h BOTH seem to know instinctively what your d needs and that your "professional help" is clueless. A united team of parents is a force to be reckoned with. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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deenl
Hi I think you are right on the ball with your comments. Why not use this as a base document and expand it, set out YOUR requirements and send it to all the team. Good professionals see the value in feedback. Remember they are your advisors and you can drop them if that is the better option,

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

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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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Sadmom

I'm sorry to read this, strugglingthrough. I could have written the same rant. I probably have written the same rant. We have had so much harmful, triangulating "help" I could write a book on it. My daughter also stayed just below the lowest end of her range and I was told to back out, let her make her own decisions, stop being the food police, to stop controlling, yadayada yada. You know it all.

We dumped one entire team for the damage they caused, and while I am not thrilled with the new team, it is better, or maybe it seems better because D is better. They still have said outrageous things to me (unbelievable really) but because D is now in the middle of a healthy range and her behaviors have improved, I try to let some of it roll off my back. It isn't easy. 

I would try to get your team on board, and if you can't I would dump them. I agree with Torie. Bad professionals are worse than none at all. I honestly cannot believe what we have been through and what I read on this board in terms of the way parents of ED are spoken to and treated. It has made me lose faith entirely in the medical/psychiatric community. That doesn't help you right now, which is to do whatever you can before your D turns 18. Since you are paying privately, you should not have to put up with a team that shuts you out. Either they get on board, you find new professionals or try it alone for awhile.

Good luck.

Sadmom
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mamabear
In the 5 years I have been on this forum it is a rare thing to see anyone really get anything out of having a dietician/nutritionist. I am sorry to say that a solid ED nutritionist seems like a 4 leaf clover. They exist…..but are damn near impossible to find. When my daughter was in the hospital I could not believe how little the actual dietitians seemed to know about what someone truly needs during refeeding. At one point, right before we pulled her out AMA, I met with a dietician who literally said "We just cannot figure out how it is possible that a 68 pound 10 year old child is not gaining on 2800 calories." I was like "BECAUSE SHE NEEDS MORE FATS AND CALORIESAND AND TO STOP MOVING!" Their idea of a "fat" was a tiny packet of butter. Even typing this last sentence makes my blood pressure rise. The whole "meal plan" thing was a complete nightmare. "I already had 2 fats"…..blah blah I tore it up into a million pieces and we fed her like my grandma fed her farmhands growing up. Butter, bread, meat, potatoes, cheese. And LOTS of it. 

It sounds to me like there are way too many people stirring the pot. Too many people with differing attitudes. You are the one who lives this and you are the one who knows what is going on with your daughter. All this is doing is empowering your daughters eating disorder. Its telling her that YOU do not know what you are doing. 

I once had a face to face with a psychiatrist. She had triangulated with ED against me. Boy was ED having a field day with it all. Anyway- I went to her secretary and told her I wanted to talk to her. She said "She is busy and cannot see you." I said "Well sooner or later she will need the bathroom or to go to her car and I will be here." So I sat there…..and suddenly she "had a few minutes." I told her what she had done and how I felt and that my daughters ED had been empowered by this doctor discussing things in front of her that should not have been. She looked at me all cocky and said 'Well you know that in the true Maudsley Method the patient is always involved and there are no secrets." I looked her in the eye and said "Well we are doing the mama bear method. I want the discharge papers drawn up TODAY." I swear to God if we would have done everything those people said to do my daughter would have been there for a year or more minimum with a very different outcome than whee she is today. 

I am not telling you or anyone else for that matter that I think you should do what we did….but I am saying that it is YOUR RIGHT to speak up and be heard. You have got to follow your own gut. 
Persistent, consistent vigilance!
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iHateED
Hi Strugglingthrough,   yup, I have been in your shoes!  Very true that no help is better than BAD help!    You didn't mention a general medical doctor in your post.  Does your D see a doc regularly for blood work and checking if orthostatic (when blood pressure is measured when laying down, sitting up and then standing up).  My D was orthostatic for many months after WR.    I ask this because I am curious why the N weighs your D and not a doctor.  Your D should definitely be weighed in a gown with no clothes underneath.   My D was gown weighed and still managed to fool the medical doc ED specialist with a 5 pound weight in her bra.  After that, I went in and looked under her gown to make sure all items were off.   Some on here have even made their child do a jumping jack or other movement to make sure no weights were hidden!   

My D was 16 at the time.  She is 18 1/2 now and doing very well and away at college, but we had a year of hell with the old team before we dumped them all and progress started again.    We were stuck, as you said, with unhelpful support so we decided to make a clean break and find others to help us.   I wish we had done it sooner but nothing we can do about that now!   Our family therapy appts were a waste of time.  D was just angry at us and FT just made it worse by her comments.  Medical D not very compassionate so D really didn't like her, plus she didn't catch the added weight in her bra!   Individual T not really helpful either.   The main thing I want to stress is no amount of therapy or talking is really helpful until truly and fully weight restored for several months.  The brain is still irrational until well after true WR.  I don't think any therapy helps before WR.   

The only good part of our year from hell was going to the UCSD one week family intensive.  We left there with a contract in place that spelled out all of the rules and restrictions.   This helped so much so that my H and I just didn't have to make up consequences for not eating every time.    Some items in the contract were No school until breakfast is fully eaten, come out to the car for lunch with mom and can return only when finished.   After school activities (not sports though) were allowed only if all food was eaten for that day up until the activity started.   Just written in black and white so no arguing each day.  

The contract was working well for a while but then we knew we had to make a change if D was going to go off to college so we came up with a new plan.  First, dumped old team. We found a new general doctor that had good knowledge of ED's although she was not an ED specialist.   Made D go weekly.  D went in first and then the doc called me in at the end.  I made my D sign a form that allows the doc to share info with me.  We used college as leverage. 

We found a new individual therapist for D.   Said if D doesn't maintain weight range (like your D she stayed right below the minimum number of the range) for one month then she was going to have to go inpatient.  The T made my H secure a bed at a great facility across the country from us.   Luckily we never needed it.     The T also believed that brain healing could not begin until true WR and that staying below the minimum was not acceptable.   Our D knew that we would follow through with the IP if she didn't do as the T said.     So many T's want to get at the root of the problem, when the root of the problem is that lack of nutrition caused a TBI (traumatic brain injury) and now all thinking is distorted.   During the worst of my D's illness she said she was so depressed and didn't want to live.  Her thinking was do irrational and distorted.  Thankfully now she doesn't remember any of that!

So follow your gut instincts.  If something doesn't feel right, make a change.  Even having one or two really good people on your team is better than having 4 or 5 bad ones!  Maybe you don't need so many.   We found the family therapist a waste of time and money so we never looked for a new one.  We knew we were good parents and not controlling of our children in other matters so why did we have to hear this from her??    Nutritionist, not helpful!   Your D is a young and growing woman and should not need to follow a meal plan or exchanges.   My D now eats anything and everything, no fear, no counting, no rules.  It is a wonderful thing.   Your D can get there too.  Do what you can to set a plan in place, with restrictions/consequences for not following the plan.   What can you use as leverage to allow yourself to be included in her treatment.  Do you pay her car bills, insurance, tuition, etc?  Does she drive your car?  Make attending appts with you included mandatory if she wants to use your car.   Use whatever leverage you can to get a new plan in place and to be included. 

Sending good wishes for a positive new direction for you all.
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Psycho_Mom
Dear strugglingthrough,

I agree with Torie: the bright spot in your list is you.

You not only know what isn't working, but you know why. You know when things don't make sense and when things aren't working.
And you also have shown in concrete results that you and h can do what needs to be done: get your d's weight back to what is healthy for her.

The only question for me is, why are you saddling yourself with all these other people?

I'm going to guess.
I luckily didn't have to do it, (altho our team was basically just one t, and I did all refeeding and challenge foods and other exposure therapy and weighing and etc etc on my own, with h support) but I would guess it's pretty damn scary to ditch "professionals" and go it alone. 

Like being on a high wire without a safety net?
But keeping all these ineffective actively obstructionist people would be like trying to walk a high wire with six people hanging off you, each wiggling and grabbing at you and telling you you're doing it wrong. 

I like my comparison, don't you?


How about you and h go over what would happen if you ditched the whole team. What would your options be in the unlikely event d tanked and needed hospital, what would happen later on, post wr, if she needed therapy or medication?

If it's fear stopping you, face it and see what it looks like.

It sounds like you actually feel OK about the psychiatrist, you just object to the ridiculous method of having everything go through her every two weeks. What if you ditched everyone but the psychiatrist? Decided exactly what you would need from her (meds if necessary, referral to higher level of care if necessary, otherwise stay out of the way) and then go and talk with her without d and see if you can work with just her?

Did your d make good progress towards recovery before you got this team? Yep. Did she make progress afterwards? Nope. As my grandma used to say, "the proof is in the pudding." 

best wishes,
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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strugglingthrough
Thanks all. Writing the post helped and your replies clarified our thoughts. We will now work to ensure the team works together, change if not and review who we actually need at the moment, who is helpful.

It is hard - we were initially just so glad to have help as DIY is one thing but with our child's life it was scary. We were in shock I guess. So it was a relief to have the medical support. Now I realise that a safety net and constructive guidance are both fantastic but worth little if you are on the high wire and there are also huge additional cross winds.

I feel very sad, weary. We know our children, love our children and with the best will in the world and most amazing professional qualifications and skills, regular consultations do not bridge that gap. To help our children recover as well as possible and as quickly as possible - the ideal surely would be medics and parents as a team with open dialogue, clear roles and responsibilities, agreed plans and mutual respect.

Does it really have to be this hard.
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strugglingthrough
Psycho_Mom wrote:
Dear strugglingthrough,

I agree with Torie: the bright spot in your list is you.

You not only know what isn't working, but you know why. You know when things don't make sense and when things aren't working.
And you also have shown in concrete results that you and h can do what needs to be done: get your d's weight back to what is healthy for her.

The only question for me is, why are you saddling yourself with all these other people?

I'm going to guess.
I luckily didn't have to do it, (altho our team was basically just one t, and I did all refeeding and challenge foods and other exposure therapy and weighing and etc etc on my own, with h support) but I would guess it's pretty damn scary to ditch "professionals" and go it alone. 

Like being on a high wire without a safety net?
But keeping all these ineffective actively obstructionist people would be like trying to walk a high wire with six people hanging off you, each wiggling and grabbing at you and telling you you're doing it wrong. 

I like my comparison, don't you?


How about you and h go over what would happen if you ditched the whole team. What would your options be in the unlikely event d tanked and needed hospital, what would happen later on, post wr, if she needed therapy or medication?

If it's fear stopping you, face it and see what it looks like.

It sounds like you actually feel OK about the psychiatrist, you just object to the ridiculous method of having everything go through her every two weeks. What if you ditched everyone but the psychiatrist? Decided exactly what you would need from her (meds if necessary, referral to higher level of care if necessary, otherwise stay out of the way) and then go and talk with her without d and see if you can work with just her?

Did your d make good progress towards recovery before you got this team? Yep. Did she make progress afterwards? Nope. As my grandma used to say, "the proof is in the pudding." 

best wishes,


Yes - I liked the comparison!
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strugglingthrough
strugglingthrough wrote:
Thanks all. Writing the post helped and your replies clarified our thoughts. We will now work to ensure the team works together, change if not and review who we actually need at the moment, who is helpful.

It is hard - we were initially just so glad to have help as DIY is one thing but with our child's life it was scary. We were in shock I guess. So it was a relief to have the medical support. Now I realise that a safety net and constructive guidance are both fantastic but worth little if you are on the high wire and there are also huge additional cross winds.

I feel very sad, weary. We know our children, love our children and with the best will in the world and most amazing professional qualifications and skills, regular consultations do not bridge that gap. To help our children recover as well as possible and as quickly as possible - the ideal surely would be medics and parents as a team with open dialogue, clear roles and responsibilities, agreed plans and mutual respect.

Does it really have to be this hard.


Ok, we have trimmed the team. And explained our concerns to psychiatrist. Still very concerned about Dietician/nutritionist (N) who was incredibly defensive and now wants D to go to appointments alone.

Mixed messages, AN definitely into divide and conquer.

Not sure what N's role is at the moment though? N does NOTHING we don't already do - less, actually, given we track calories, food phobias, exercise, behaviours but P thinks it's good for D to have independent monitoring and advice?!

AS D is no longer at a dangerous weight (?) they have decided to go along with D pausing at a weight for a short time to get used to it - D thinks they are agreeing that this weight is her new target.

D sees it as a maximum weight not a minimum. It is 2 kg less than the weight we thought initially with P - and 5kg plus less than the weight D was before this.

They have not told D it is a pause. So trust will be gone when they move the target again.
I still can't believe they provided a target in the first place but it was done by N in a meeting at which we were not present and we were told afterwards.

It feels like protracting the agony.
With a diabetic would this happen?
I don't like injections so can I just cut down my insulin injections for a bit please?
And with a cancer patient would this?
I don't like chemo regardless that it is working so I can I just do alternate sessions please?


If they are really concerned that her mental state requires a pause - should they not do something about that rather than stop weight gain?

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Lily_uk
Hi Struggling Through,

So sorry to read your posts, it is virtually everything H & I have been through with our D over the past year & she's a similar age. We too are in the UK.

We've been down the private route, changed therapist a couple of times & are now happy with the team. N is very practical & experienced in EDs & a good influence, only seen when required in our case (I think I would either change or abandon yours from what you've said & refeed D yourself).

P is supportive as we explained what we've been doing at home with refeeding her & we weigh her (nobody else) & keep P in the loop. We have the whole appointment with her now D is recovering well & as she's improving P sees her maybe once a month.

Tried FT but we all felt it was unhelpful & awkward so didn't continue.

On third T now, asked if we could have an update together & she was happy to give it after each 6 weeks. Could you ask yours if this would be possible? D doesn't have to discuss anything in front of us it's just for the T to feed back what would be helpful for us to do & us to discuss what's gone well/what's been difficult for our D. We handle it calmly & carefully as D very sensitive. Although D found it awkward at first it's helped open communication between us & D is so much more able to open up to us since having weekly therapy (12 months so far in our case). Original T didn't do this & we find this T much more helpful.

To be honest, it took a lot of months of therapy before we saw any noticeable difference in our D, probably as she was underweight. She was w/r but has had a relapse, is now recovering & is in a much stronger place this time & wants to get better for herself (not us, as it appears she was last time).

It is a journey. It does take time & you can't rush it I'm afraid. You learn such a lot from going through the different stages, even though you don't want to go through them &
just want your D to be better.

Our D now wants to be free of this to go to uni in the autumn & she knows she can't go if she's ill so that is a major motivator for her now.

It sounds like you & H are doing a brilliant job & are on the case. I have felt exactly the same as you over the past year & wish it could have been easier with the medical profession but trust your instincts, you won't always get it right but you are there 24/7 for your D and the team aren't. I have found this forum to be a such a life saver at times, to know that other parents are going through what you are, thank you so much to everyone who posts on here x

Also, not sure if relevant to you but I went to our GP after 6 months of going through this illness as I was suffering terrible anxiety & he put me on Citalopram which has really helped me to cope, it's been a life changer for me.

My D is on meds now for anxiety (I hadn't realised until fairly recently that she's always been an anxious person!) and she's much more stable & happier.

Really hope that this helps & sending love & strength to you, your family & your d xx
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strugglingthrough
Thanks, LilyUK - it's really helpful to hear someone else's experience including the ups and downs on the way.

We have now stopped FT and swapped IT.

No wish to sit in on IT sessions either - but we do think it would be helpful to meet and discuss what is working, what's not working so we help D at home.

Sounds like your T was happy to do this so it's clearly not an unreasonable request?

We see P every 2 weeks at the moment - after initial concerns it is now generally v helpful but sometimes a lot of the time is spent unraveling mixed messages or contradictions from the N or FT. (P has disagreed with N several times now too.)

N is my worry, she was very supportive earlier but she has very fixed ideas and won't discuss - just pronounces from the pulpit. (Well that is how it feels to us.) We do think the target weight is too low. Happy to get to the initial weight and review but cannot understand why you would stop kgs below even the initial weight.

We do value her experience but given the amount of very recent research we also hope she has reviewed her approach in light of the new information and experiences of others and at least considered whether it should be refined.

Neither H nor I understand what N can bring on a weekly basis. Now the appointments just seem to make it worse. We have to take time to get D back on track after each one. We weigh D also, monitor intake and exercise calories. As you see N as required - when do you find it helpful?

It seems to us that D only wants to see N if she agrees with D (ED) rather than us and D thinks N easier to persuade on less/no need to gain weight than we are.

Good point re the GP - I have seen him but should do so again.

Thank you again.



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Lily_uk
Hi again,

Sounds like you're getting on top of things, well done.

We thought we'd see N at first as we were in panic mode & felt we needed as much advice as possible. We've only seen her a handful of times. She doesn't discuss weight or interfere in that way which is good. She just advises D (with us) about a healthy balanced diet & it reinforces our efforts at home with D.

I know other people on the forum have different experiences but it does get more difficult when you're dealing with a young adult & we've found it helpful. We told her (and every other health professional we've been into contact with) we were using Ds weight charts from childhood to gauge where her weight should be. We've repeated this persistently to our D all along that's what she should be aiming at & where she will be well & she's finally accepted it.

We had the same experience last summer where they (P & T at the time) agreed with D to let her stay at the same (low) weight for a few weeks for exams without discussing it with us first, we were SO annoyed & had no choice to go along with it as D was adamant but eventually we got D to agree to start gaining weight again afterwards.

As I said, she did become w/r but had a relapse & is now gaining weight again & is much better mentally than before. Hopefully the meds are starting to help her with anxiety now, too.

It's like she did it for us last time as I said but this time she is the one wanting to recover from this. I don't know if it's time & nutrition that has helped her get to where she is now?

I'd definitely suggest to the new T for an update after every few weeks where you & her can work together to help your D as a team, you can say a friend has done this & it worked very well? You've nothing to lose by suggesting it.

When D was struggling we emailed T about the difficulties & told our D that we had done this. In the next session T asked if our D wanted to read it but she said no.

Although it was terribly hard at first, we find that our D is seeing us as part of the team now & not the enemy which is so good, hopefully your D will do the same with time.

Good luck with everything xx
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strugglingthrough
Hi Lily_uk

We too were in panic and needed all the help we could get - so we also saw a dietician. It was helpful to have what we were doing validated but now it is just causing confusion.

How did you persuade your D to start gaining weight again. Our D simply refuses. Has cut out all snacks. It's no longer tears and trauma - just calm refusal.

She is well again and that it is it.

D does not see us as part of a team. Indeed I don't think she sees a team. She utterly determined she is now well but depressed. And so the individual therapist is helpful. Full stop.

To go from refeeding and 6 meals.snacks a day to 3 meals, no snacks and less than 2,000 calories a day must surely confuse her body/metabolism and ED is so very much still present.

I can sit for hours, follow her with snack and the answer is just a calm no.

What to do?



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Lily_uk
Hi again Struggling Through,

So sorry to hear you've got to this sticking point with your D. We were at this point last year & it is horrible & so worrying, I really feel for you.

Are you just seeing P & T now? I don't think that particular N is helpful. You know what to feed your D, I really think you're better off without them. Even though we weren't happy with our team at times, it was the best team available to us at the time & we never let our D know this.

With the snacks, maybe you need to discuss what you're going to do with H first & have a plan, then have a chat with your D that this isn't working, D isn't going to get better like this & she needs to follow a meal plan to get better.

There's a great article on Psychology today which we showed our D last year about only starting to get better when your reach a certain BMI:

https://www.psychologytoday.com/blog/hunger-artist/201011/starvation-study-shows-recovery-anorexia-is-possible-only-regaining-weight

We said repeatedly to
D what had she got to lose by trying this? I have to agree that past a certain BMI, our D became so much better, she said it herself so we have clung to that ever since.

This is how we struggled through last year, I hope there's something in this that helps?

After each weekly weighing, H & I would always have a chat with her to see how she was feeling that week. Very hard for D to talk about her feelings at first, she's so much better now, as I say the therapy has helped her open up.

We realised she found it much easier to talk to H than me (they are very alike) so we would discuss what H would say before & I would keep quiet & listen (very upsetting at the time but I now know she found it hard to talk to me as I was so anxious). Does your D relate to your H, maybe she would talk to him about how she feels? Just a thought.

We showed our D her childhood growth charts & explained that her mind wouldn't be better until she was at the weight that her body ought to be. We made a weight chart plotting it each week where she was & where she was trying to get to (we still do). She didn't want to know her weight at the time (she does now), she saw this on occasions but it did cause anxiety.

She had a holiday she wanted to go on with a friend last summer which she was aiming for so we used that as motivation for her to gain weight (is there something your D wants to do in the summer that you could work towards?).

With the team agreeing to hold the weight over exam time she couldn't budge it afterwards so she didn't go on that holiday which was very hard for her (she actually agreed with us that she wasn't well enough to go herself).

After all this, she finally agreed to start to gain the weight & H & I thought taking a drink supplement would help speed things up as she was eating the 3 meals & 3 snacks a day but not gaining weight. We thought that once she was at the target weight we could remove it & that would be fine if she was eating ok (team weren't keen but we thought it didn't matter as long as she gained the weight).

She got to her target weight & was happy & like her old self for a couple of months.... (or so we thought).

We found out later that gradually she didn't like how she looked or how tight her clothes felt (old T hadn't dealt with body image very much) so unbeknown to us she started to restrict slowly & then relapse. We found out as she was increasingly more anxious, depressed & had s/h, she had been cheating her weight too so we told P & T, tried to stay calm & told her we'd get through this.

This time she is regaining without the shake, she knows that she can't go away on holiday in the summer, can't go to university etc.

We have made a meal plan with her where she writes in for the week her meals & snacks & food challenges & it seems to be working well for her. We are still supporting her at dinner but now mostly unsupported at other meals. As I said, I think we are further down the line than you.

She isn't recovered yet but is gaining weight & getting mentally stronger & we are all more hopeful for the future. This is such a strong illness to recover from but we are determined.

Really hope this helps & maybe others will be able to give you some advice too xx



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strugglingthrough
Thanks again, Lily_uk. Sounds like you are moving forward.
Pausing seems to cause real problems - it has for us too.
Just seeing P and Individual T now - less confusing albeit we have no contact with T at the moment we will next week finally.
H and I have discussed and discussed snacks - but we cannot get past it.
Discussed with D but her answer is simply that she is now at the correct weight and will eat "normally" so no more snacks or juice or smoothies between meals and only water with meals.
She won't do a meal plan and won't even discuss it.
D is "happy" with her weight.
We worry that to suddenly and so dramatically cut back in both calories and frequency of meals will not aid her recovery.
But we, like you, are determined to help our D through this.
I will post another one on snacks and see if we can get more ideas for snacks.
Like your D, our D is keen to go to university but at the moment, I can't see how she can be well enough to go when she wishes (and she has lost time in exam prep also which may well make it very difficult.)
It is so hard.
We would love to believe she is better as she does, but the evidence is so much against it.
And her weight is below the weight it was several years ago and she is a taller too.
Hopefully, like your D she will start to gain again - it's only a small amount more - and become stable mentally also.
Best wishes for your D's ongoing recovery. I hope that at the end of this our D's will be stronger.
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strugglingthrough
Lily_uk - forgot to say thank you for the link too - lots of helpful information on there.
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