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.

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Yogi13
Was wondering if you have a "team" (beside the home team) of people caring for your d or s?  We see a psychiatrist weekly and check in with our pediatrician.  Is it necessary to have a dietician on board?  
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Hendrixt
We’re doing FBT (Maudsley Method) in the UK. D’s clinical team is the Community Eating Disorder Service plus her doctor and a paediatrician. There is also a dietitian but we’re not due to see her till Wednesday. We don’t see the paediatrician until next month for the first time 
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scaredmom
We had a dietitian in hospital. Once we were with the outpatient team there was a dietitian available but I did not utilize her services.
I learned here how to add calories surreptitiously via oil and cream etc to get the weight on.
We had an FBT therapist (social worker) who weighed d and talked to me privately about how it was going. What difficulties I had with d, etc....
We had the ED paediatrician to weigh d and discuss and prescribe meds.
I don’t think a dietitian is necessary unless the parents don’t know how to increase the calories. We only had a psychiatrist in hospital. 
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
There was a thread recently about the dangers of the dietician. If you want to see one to help with increasing calories maybe you should go first without your daughter. But I think you said your daughter is gaining 3-4 pounds a week. 
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Yogi13
Yes.  D is gaining, so I think that I am doing a decent job at putting in the extras (learned from here).  I am trying not to miss anything that is important for support. Because of this forum, I am filing the necessary paperwork for her to be supported at school next year, so when a question pops up, I ask.  

Thanks for your feedback.  
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workingthrough
Our s has had for ~last year

- Dietitian: weighed weekly and hour visit with both of us in adding fear foods, talking through fears of sugar/disease, etc. She talks with us first and then s, she’s been a rock and so wonderful.

- Therapist: one hour a week, working through ED behaviors: clothing challenges, anxiety, depression, suicidal thoughts, etc. 

- Psychiatrist: monthly/quarterly check-ins

-  Pediatrician: every other month visits; s had a rough winter with allergies/sickness and was there every week-other week for a few months. 

- School Counslor: ~weekly-monthly emails to us and watching/keeping an eye on him at school and updating us. 

Do I think an entire team is needed? Not necessarily.

Did they help us through the darkest days? Most certainly yes. 

Our team empowered us, with the exception of psychiatrist, who wasn’t familiar with FBT, and really pushed for residential.

They encouraged and cheered for us. They offered advice, ideas, support and love. When I second-guessed they held firm and consistent. When s struggled with following through, higher level of care was, is, and stays on the table. 

It’s been exhausting and taxing on everyone with appts, schedules, etc. S had half days twice a week, sometimes more, with appts. I think having those appts and breaks from school was a relief to him. 

For us as parents, it was helpful to have additional voices in the choir - all encouraging him in the same ways and united in every way. 

It worked for us. I hope and pray we never walk these roads again - but if we do, I don’t think we’d change a thing. We’re so thankful for our team.

eta. We were blessed to find an amazing! dietitian. After reading on the forum, I realize how wonderful she is and how blessed we are. I most certainly would screen very, very carefully and/or just keep doing what you’re doing without additional dietetic help.

We did visit a dietitian (before finding who we’re with now) who gave s complete control of his meal plan, had him counting nuts and food items . . . it wasn’t good. 
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Hendrixt
debra18 wrote:
There was a thread recently about the dangers of the dietician. If you want to see one to help with increasing calories maybe you should go first without your daughter. But I think you said your daughter is gaining 3-4 pounds a week. 


Hi Debra. After six weeks of refeeding Dhas only gained 0.2 kg (not three or 4 pounds)I’m not sure whether we need to see the dietician, it was just suggested by the therapist. However, the therapist wanted D to be involved in the discussions with the dietician and that we would have to disclose in front of D all the ingredients and cooking methods that we use, including the fact that we put cream into a lot of recipes and fry in butter and oil, basically all the things that we do to increase calorific value.  We don’t discuss ingredients in detail with D and she doesn’t ask so we don’t tell her any lies We said to the Therapist that  we are happy to see the dietician, if she thinks it will help, but that we totally disagree with talking in detail about ingredients in front of D. So the therapist has agreed that we will see the dietician without D present but she has pointed out that that is not what they advise as they believe that we should be open and transparent with D about everything that is in her food.  The therapist advises against “sneaking “ingredients into food and states that she is going to document it that we are not following advice. That’s fine with us to be honest as we are pretty confident that we know what we are doing   If D specifically wanted to know what ingredients were in a meal then we wouldn’t tell her any lies and she has never challenged our policy of not getting into discussions about specific ingredients. We are going along with the appointment with the dietician (just ourselves not D) just to see if there is anything in fact that the dietician can offer, for instance if the dietician wanted to talk to D in support of our plans to increase food size portions and to introduce fear foods that would be fine.
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tina72
"After six weeks of refeeding Dhas only gained 0.2 kg (not three or 4 pounds)I’m not sure whether we need to see the dietician"

That is way too low and YOU can decide to see a dietitian if you want but NOT with your d. Problem is that many dietitians learned how to make people lose weight but not how to make them gain.
Can we help with ideas to increase intake?

"the therapist wanted D to be involved in the discussions with the dietician and that we would have to disclose in front of D all the ingredients and cooking methods that we use, including the fact that we put cream into a lot of recipes and fry in butter and oil, basically all the things that we do to increase calorific value"

That is a TOTALLY CRAZY idea!!! Do NOT listen to that! This therapist seems to know not much about ED patients! What normal kid is interested in what the mum puts in the meals? They fall into the kitchen, eat what is on the table and leave with their friends 5 minures later - normally.

" The therapist advises against “sneaking “ingredients into food and states that she is going to document it that we are not following advice. That’s fine with us to be honest as we are pretty confident that we know what we are doing"

Puuh, I am relieved that you see it that way. Try to be relaxed about the documents 🙂.
Keep feeding. There is light at the end of the tunnel.
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tina72
To answer the question above:

we have

GP
ATDT
nothing else at the moment

No dietitian needed because of great advice we got here 🙂.
Keep feeding. There is light at the end of the tunnel.
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sandie
Yes I have been castigated for putting hidden calories in food. Makes me laugh. How can a starving resistant child put on 11kg on jelly and tinned tuna? Actually makes me angry. I asked for drink supplements when D at BMI 13 and doctor refused.
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sandie
@Hendrixt just to add I never discuss ingredients with D. I think this is well-established advice for ED. If she asks, i say I am not discussing ingredients.
and although i have always preached the importance of being truthful and avoid lying to D, I will if necessary about food to help her recover.
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kazi67
I say it takes a village

and you may not need all the help/support that’s out there 
you may figure things out yourself or with support and info on ATDT

but I found not only does my d need a lot of support/help but I need it too
i think the longer you are “at it” fatigue can set in and the deceptive nature of the illness can wear you down if you aren’t careful and don’t take care of yourself (or actually are trying to have a life yourself) which I now am after caring for my d 24/7 for the first year 
took heaps of time off work but now I am back for some sort of normality for me

so if you continue to make good progress with no set backs more than likely the team you have is sufficient 

my d is older and I find it helps to have more fighting the illness than just me, we have been “at it” for 2 1/2 years now and I’m tired my d is older and so I’m using the village around her/us to help in any way they can 

I would say if your d is gaining weight weekly you don’t necessarily need a dietician 
if you are having major trouble getting your d to eat and she is VERY rigid in the foods she will eat possibly a dietician can help 
we found we needed a ED specialised one though as the “usual dietician” was encouraging low fat etc as they usually used to trying to get people to loose weight
so be very careful as once it’s said by a “professional” it’s very hard to change the AN  mind
for eg: my d was a dancer and I was insisting on a glass of milk with each meal, the dietician said “oh no need for all that milk”, which I could of punched her right in the face and I’m not a violent confrontational person at all, but when my d first become ill she couldn’t even drink water I had to bring it up to her lips and watch her cry and make her drink it so I can only assume you understand how I felt when she said that!
 
my d still struggles to drink milk 

some here disagree and say you do not need professional help 
that’s ok for some but not all, every case is different 
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scaredmom
Hendrixt,
I told the pediatrician I was adding stuff, she too said to be honest so I ‘ honestly’ never told her again what I was doing.
at the beginning I had to add to ensure weight gain and the fear of large volumes of food was hard to tackle. After d gained a lot then I increased volumes and she was less fearful. When asked I did not say what ingredients where  in it ,as a child never would or should care anyway! I just told  her it was fine and why she needed. 
You have to do what you have to do and they should not make you feel badly. It is not their child it is yours.
I have no qualms adding stuff I just don’t tell the team what I have done. Our social worker knew and agreed with me, so I kept the doctor out of it. 
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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Yogi13
Once again, thank you all for sharing your experiences with me.  As always, all of your insight and advice is priceless.  

She is gaining well (we will see what this week brings), and I am happy with her progress.  With the knowledge I have about nutrition, and what I have learned here about making each meal calorific, I think I have a handle on that part. 

Her FBT psychiatrist is there to support her eating and issues we have regarding re feeding.  

As far as dealing with the issues of what started this for her, I may add a therapist into the mix, but I need to see how we progress with our current psychiatrist. 

I am back in therapy-which helps loads.  I have started hypno therapy as well (very powerful) for strength and patience.  I also have an established yoga practice (I also highly recommend).  

I didn’t realize what a village I actually have.  

🙏🏻
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Hendrixt
sandie wrote:
@Hendrixt just to add I never discuss ingredients with D. I think this is well-established advice for ED. If she asks, i say I am not discussing ingredients.
and although i have always preached the importance of being truthful and avoid lying to D, I will if necessary about food to help her recover.


yeah it did puzzle me on our first session the therapist asked, in front of D, what do you put in the breakfast smoothie. D didn’t, and still doesn’t, have any idea that it’s rammed full of cream, full fat milk and honey. Thank god we’d read up about it as we refused to tell the therapist, who then said - no, you really can say- and we said no - we really won’t 
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Hendrixt
scaredmom wrote:
Hendrixt,
I told the pediatrician I was adding stuff, she too said to be honest so I ‘ honestly’ never told her again what I was doing.
at the beginning I had to add to ensure weight gain and the fear of large volumes of food was hard to tackle. After d gained a lot then I increased volumes and she was less fearful. When asked I did not say what ingredients where  in it ,as a child never would or should care anyway! I just told  her it was fine and why she needed. 
You have to do what you have to do and they should not make you feel badly. It is not their child it is yours.
I have no qualms adding stuff I just don’t tell the team what I have done. Our social worker knew and agreed with me, so I kept the doctor out of it. 


Weve decided we’re going down the same route and not telling the ‘professionals’ what’s going on food. As you say you do what you can as your trying to save your child’s life, or at least save her from years of misery 
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tina72
As most of our kids have/had to gain a great amount of kg it would only increase their fear and not work to tell them what is in the food.
And to be honest, no healthy kid asks their mom what is in the meals. They just eat it and that is the goal.
Keep feeding. There is light at the end of the tunnel.
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Ellesmum
I’ve never had a moment of doubt about adding stuff, I credit my ‘magic porridge’ with d being as well as she is today. My view is we should be advised how to get calories up not told not to.

you can’t have things both ways, tell the parents to take charge of food but then ‘not like that’.   As I’ve said before even the vet would advise hiding medication in the dog food, these are our beloved kids.  

As d began to eat bigger portions and more variety so I pulled back on adding things but I don’t hesitate to boost if I think it’s required.  

If I listened to the professionals my d would be in a far worse place for far longer.
Ellesmum
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mamabear
Dieticians who are actually up to the task in this are few and far between.  I’ve actually been talking to some top dietitians in the field lately and the bottom line is they are tauggt little to nothing about eating disorders during their training. It is a specialized thing and there are not many who are actually trained on the intense needs of our kids. A bad dietitian is far more harmful in my opinion than having no dietitian. We did not have a team with my daughter. All we had was our general practitioner and she basically agreed to say and do what we asked of her. I would call her ahead of time and ask her to do blind weights and then to just tell my daughter basically to trust mom and dad and that we are doing the right thing. She was basically just back up for us. 

I’m not necessarily recommending doing it on your own. There are some fabulous professionals out there as well but I live in a very rural place and the nearest anything to me it’s about eight hours away so for us it was basically we had to do it on our own and we did. This forum and all the other support groups in my opinion are the best resource for all of us. Other parents who have walked this walk and have lived through the it and are out the other side can offer so much advice. Read the post I posted last night.
Persistent, consistent vigilance!
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peregrine_USA
My daughter is an adult so this is a different take but perhaps others with adults will want this information.  First, she thinks this book is excellent and refers to it:   Casey Crosbie and Wendy Sterling:  How to Nourish Your Child Theough an Eating Disorder.  She found everything, she said, to be very helpful.
Second, early on (meaning almost nine years ago) I wrote the following post on my blog about a team.  I chuckle now because I think I was among the first to use the term anosognosia for those with anorexia, too, and I mentioned the word in this post thanks to my NAMI family to family class..
https://desertdwellergettingon.blogspot.com/2010/11/team-approach-how-to-keep-recovery.html
Peregrine_USA
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