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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

sandie
Hi 
We are almost a year into fbt. Although D still being seen weekly by CAHMs, they have reduced frequency of weighing. She was being weighed weekly till end July and has been weighed once since; I had agreed to fortnightly weights but psychologist decided to do spot weights. It is not working. She is still underweight and looking at her today she has lost weight. I have repeatedly raised concern that she is eating less; although eating 3 meals and snacks daily, she has become independent with eating too quickly and won’t be open with me about what she is having for snacks as “all that is in past and I need to get over it”. 
I know what I need to do- increase supervision, increase calories, insist on weighing and I know it will be “bloody”. 
Has anyone else had experience with cahms being highly reluctant to weigh regularly? I cannot understand.  Thanks
Quote
ValentinaGermania
As long as they are underweight and not really WR + some pounds above spotly weighing is very dangerous as you do not realise when they lose weight.
Get on their feet. You are the boss, they should support you and your d is no guinnea pig...

We had weekly weighings until WR and then every second week for the next 6 months and when she maintained her weight (my d was grown out) we changed to every 3 months for year 2. Now in year 3 we stopped weighing and do it only when we fear she has lost or when there are some changes in her behaviour.

To stop regular weighings before WR is very dangerous.

"I know what I need to do- increase supervision, increase calories, insist on weighing and I know it will be “bloody”."
Sorry to say that but you got it! That is what you need to do. Indipendence before WR - who´s idea was that??? Let me guess - cahms?

There are some parents here that had good cahms teams but a lot that had the opposite...seems to be a lottery there...
Keep feeding. There is light at the end of the tunnel.
Quote
Ronson

Hi

camhs wanted to reduce/stop our weighs.  My d is now weighed fortnightly by gp (nurse at gp) it works well for us.  You don’t always have to go with camhs - they are there to help us but sometimes we know best. 


Quote
sandie
Thanks. I know i dont always have to go with them but I feel desperate for their support as they have been with me on journey so far and without them i would feel very isolated except for this forum. Weighing at gp  is an option i suppose for future. D would likely refuse to go there and she has developed a relationship now with psychologist so i think best bet is for me to insist on fortnightly weigh there  
Quote
Ronson

We are still with camhs but moved to gp for weighs.  It actually suits us best geographically as well and my d did not like camhs so this worked well for all of us. 

in our experience camhs seem very quick to want to move onto the next stage.  I’ve been fairly lucky I have put my foot down with them and managed to maintain a relationship.  It doesn’t help when they push for independence too soon as it gives Ed something to use against us.

Quote
sandie
It is great that you have been able to take control of frequency of weighings with this convenient arrangement. I will insist on fortnightly. Thanks
Quote
sandie
Rant alert 
So D weighed today for 1st time in month and had lost weight. Psychiatrist said she was happy with her weight ( less than 86%wfh). Thanks to this forum for giving me confidence to loudly disagree. Not ideal in front of my D but I am not going to sit and listen to poor advice anymore. 
Psych said she would weigh monthly from now and I asked to speak to her without D in room. I insisted on weighing fortnightly ( as I had previously agreed with team).
once again I was told she is stable as she has her periods. Once again I said that was not enough and we needed to look at her ED behaviours and mental state and historic growth curves. we reviewed weight growth curves and yes she is nowhere near her historic growth curve. I had already explained before she was weighed that she has become more emotionally Labile  in last few weeks with increase in ED behaviours and I thought it was because she had lost weight. 
We agreed yet again on importance of team and me agreeing goals. She said we needed to meet together with psychologist and D to agree goals and find compromise. She repeatedly tried to get me to agree to a lower target weight than previously agreed- and the only reason seems to be because D has lost weight. I refused to compromise and said I was not prepared to accept partial weight restoration and am aiming for full recovery. A key factor in her weight loss is that she has not had enough support because service stopped weighing her and told her she didn’t need to gain more weight.
She is committed to recovery and doing really well with respect to eating 3 meals and snacks daily and more variety- just not enough calories. They just make assumptions that she does not want to put on weight. 
 Aaaaarghhhhhhh this is so hard. 
So I have a distressed D who knows I don’t agree with her team. 
But we have a way forward- at least the team and I agree we need to be saying the same thing! And we will meet to agree it. And I will not bring my D to this meeting........and once again I will put plan in writing.
rant over...........
Quote
Enn
You go girl! Advocating for ‘the right’ treatment. 
Stand your ground. Love this!
great job!
yes d may not be happy but you have shown her you are in her corner and on the side of recovery and not just ‘good enough care’ but the best and proper care! She will get it in time!
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)
Quote
deenl
agree with everything Scaredmom said. You did brilliant. Hats off.

But AAArrrrggggghhhh that it is made harder than it should be.

Hang tough,

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.
Quote
Hendrixt
Same for us. D has been been weight recovered about 3 weeks. CAHMS pushing to stop weighing altogether and we are pushing back. All through treatment you feel as though you are being rushed to the next stage. During refeeding therapist told D she could start PE again at a time when she was feeling faint and couldn’t stand up for more than a few minutes 🙄
Quote
ValentinaGermania
You rock! You can be very proud that you stood up against her for your ds health and sanity and it was needed!!!

"Psychiatrist said she was happy with her weight ( less than 86%wfh)."

NO professional should be happy with ANY weight loss and with not reaching the target weight and go for state not weight then. This is not professional at all.

"Psych said she would weigh monthly from now and I asked to speak to her without D in room. I insisted on weighing fortnightly ( as I had previously agreed with team)."

She lost weight and the answer of the psych is to go for longer gaps between weighings??? This is also not professional at all. Weight loss should lead to shorter gaps between weighings, weight gain or maintenance (depending on age) should lead to longer distance between weighings.

"once again I was told she is stable as she has her periods. Once again I said that was not enough and we needed to look at her ED behaviours and mental state and historic growth curves. we reviewed weight growth curves and yes she is nowhere near her historic growth curve."

You really know better what to do and what is important than that professional and that is sad.
Periods is no sign for anything in ED recovery. That is the reason why it was taken off them symptom list. Some patients do never lose their periods although terribly ill. Would that psych say that these patients are stable too??? My d also got her periods back very early at a bmi below 17 and she had 3 in a row and then she took contraceptiva for some months and after being off from that it took 10 months to get her periods back although her weight was 7 kg more then the first time she got her periods.
And I also needed to fight the professionals here because they also have told my d she will be healthy when her periods are back and then when this happened while still in IP and still underweight they were very surprised when my d asked to go home then now...

Periods is no sign for anything and that is common sense in the real professional world.
I would ask for changing that psych now...before she can do more harm to your d and can torpedo your progress totally.
Keep feeding. There is light at the end of the tunnel.
Quote
Ronson
Less than 86% wfh seems low -
we had to get up to over 100% to see positive signs of recovery and she is now doing well at around the 106-110% (not sure exactly where she is now).  Yes push for fortnightly weights but I’m surprised they are happy with this weight as well

Quote
sandie
Update: after lots of direct communication and escalation to higher tier service and frank challenging discussions, we finally have increased target weight agreed with CAHMs more in line with historic growth. They have accepted that return of periods is insufficient indicator. 
For others in cahms in uk under tier 3 Ced service, if you are having problems with the service, may be worth asking for input of tier 4 service. 
Hard work! I feel very relieved. D distressed- not surprisingly as different clinicians have given her different messages for last 6 months. 
D will also be weighed more frequently- weekly if losing weight and otherwise fortnightly.

i know we have lots of challenges ahead, but I know we will get there now. Massive massive relief. Hugs to everyone for your support. Xx
Quote
Enn
Oh that is a win! Way to 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)
Quote

        

WTadmin