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

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Fivril
My daughter is borderline WR and we have now been told we are loosing our NHS support in December (Psychiatric nurse and nutritionist). We have not completed any maintenance/relapse prevention strategies. My daughter is only preparing breakfast on her own and is relying on me for all other meal preparations. She is eating healthily but is still avoiding meat/pasta/sugar. In 22 months she has gained 13 kilos and every single one has costed blood, sweat and tears - for both of us!

I would really welcome any advice in terms of moving forward. How do I introduce her to cooking for herself and/or take more responsibility for her own feeding whilst she is still so vulnerable? She is 21 by the way but in many ways far younger in mentality. She is currently studying at Uni but is living at home for support with feeding. She will typically bring in a wrap/sandwich and fruit if she has to eat out. All other meals are at home, except breakfast on a Sunday at our favourite cafe 😊
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tina72
Hi Fivril,

a very warm welcome from Germany and great that you found us here! We can help you a lot with that, don´t be afraid.

So first the positives: Your d is WR and she is eating what you serve. That is a good start. She is living at home. So eating is under control at the moment.
Your situation is comparable to ours.
My d is nearly 19 now, WR for 16 months and going to University now but still living at home. She is doing half schedule and eating lunch 3 days at Uni and 4 days at home. Breakfast and dinner still at home. She is doing her snacks and breakfast and dinner herself and I am still plating lunch (which is the biggest and the warm meal here).

What I would suggest for first aid:
Use the rest of the support of nurse and nutritionist to make your d sign a contract. We did that. She gave us allowance to speak with all docs if needed. We wrote down what we will do for her (support University, pay for phone, car, living) and what she has to do for that (go to GP and weighings regularly, eat 3 meals 2 snacks, etc).

About independence with eating and cooking for herself:
That is something you can introduce slowly. As long as she is living at home there is no need to hurry with that. Normally they need that strict safety net and that routine for a long time. So the relapse risk is higher when you do things too early. There is nothing you can do too late at the moment.

We can help you with working on this independence and I would suggest that you need to work on her fear food list, too. That is a huge step on the way to recovery and necessary. She really needs to eat meat, pasta and sugar again to have her brain fully nurished. The brain runs on glucose and the body cannot produce it on his own. So if she does not eat sugar her brain is not fully nurished and cannot recover.

We did nearly all refeeding and FBT without help here because we do not have that in Germany. My "therapists" and "nutritionists" were all the nice and experienced parents here that knew what I was talking about and gave me excellent advice.

Please come back and ask your million questions and we will try to help you. This forum saved my ds life and my sanity.

Tina72
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Welcome to the forum. Sorry that you have had to find your way here. 

Oh the frustration of a health system that withdraws support when treatment is really only getting going! I am sure you know your  D is nowhere near better, just physically a lot better than she was before. 

As much as possible I would look at continuing what you are doing for a lot longer. This is a long illness and it takes a long time to recover. Often as they are eating more consistently day in and day out their brains heal and they find it easier to take that role of caring for themselves. Trying to  make continued eating not negotiable, keeping up the regular meal times and snack times, and assessment with GP regularly may be a good strategy too. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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scaredmom

Hello there, and welcome!!

I am so sorry you needed to find us. Here I hope you will get the support you need. We have been through it too, just as you have and I agree that every ounce of weight our kids gain is through blood and sweat and tears!!

You say your D is borderline WR. I wonder if she needs more weight. (Please look up toothfairy's posts on state vs weight) Most have found (we did as well) that D, although 11-12 and so much younger than your D, during the refeeding, had to go well above that first target to improve her thoughts and behaviours.  Have you tried to push for more weight? I know your D is an adult and you are correct in that they do seem "younger in their minds" than their chronological age. It is a good thing that she is at home with you so that you do have leverage. Can you feed her more? I do feel that in order to "get over the hump" and get moving again you will need  challenge the safe foods and try to eat in  different places as well, without upset,   to maintain health both physical and social. 

My feeling, from what you have written is that she still needs you to support her big time and longer than you both thought. How long has she been at almost WR? Just note that it does take time, a lot for the brain to start to heal. For my D, the first WR was too low, I read here to keep getting the weight up. I did and then at 6 kg more (4 months after first WR) than original WR, her thoughts were so much better and at 13 kg more than first WR, she is better still. Now my D is only 13 now and so my experience may not work for you, however,  I think the commonalities in the illness, at any age are:

1) get the weight up more, keeping it up
2) Hand over control very slowly. Very slowly
3) challenge ED thoughts, behaviours and "safe foods"

I am glad you are here. Please ask all the questions you have. There is always someone around. There is always someone who has been exactly where you are right now.We are here to give back a bit of what we received here.  So ask away, we really do want to help. If there is something we can do to make it easier for the next parent, family, child that is our goal!
XXX

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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scaredmom
Just a question, why are you losing NHS support? If so, you need some sort of medical +/- psychological support ongoing,I would think? At least medical supervision, as FoodSupport notes above. 
XXX
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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Kali
Dear Fivril,

You ask a really important question and one that I pondered also, and tried with trial and error.

Here are some things we tried to help support her to be able to be more independent:

My d., now 20, was at home until she turned 19 and we went slowly.

I had her go to a restaurant and pickup takeout and learn to order that. (She wasn't able to do that at first)

We practiced eating out at different restaurants.

At first, she was taking her own lunch 3 days a week. We tried that to see if she could without losing weight.

We attended a cooking class together where you had to eat what you had cooked at the end of it.

When she moved away from home I drove up and took her food shopping every two weeks and eventually she learned what she needed to in order to do a good food shopping. The last time I went food shopping with her, (about 3 weeks ago) I noticed that she knows where everything is in the supermarket that she needs, is planning meals and is buying full fat items and a good variety of different foods and she led me to what she needed and had her own shopping list. I had spent lots of time discussing shopping lists and helping her learn to plan menus for different meals and what she would need to make them.

I kept a binder full of recipes which were not complicated to make, for meals she was successful eating that we had eaten over and over (had to have enough calories and nutrition) and sent it off with her when she returned to school.

Sometimes I asked her to cook dinner with me, at first we did not do that and she stayed out of the kitchen entirely while I was cooking, but after being weight restored for awhile she was able to. I did not allow her to change any ingredients and luckily she did not comment on them. Since we were reading from recipes we just followed them. 

Most importantly I think, I paid close attention to her weight (she is still in treatment) and if we tried to give her more independence and that resulted in weight loss, I stepped in and helped bring her weight up again. I still do that.

In your daughter's situation where you say she is borderline weight restored, I would suggest you keep supporting her for quite some time. When she is fully weight restored and maybe has a little cushion, and has been for awhile, maybe 3-4 months or so, you could try to give her a little more food independence and see how it goes. If she loses weight you can step in again with additional support. However if you are losing your care this makes it more complicated since you will need to find a way to weigh her or have her weighed. Does she have a GP who is well educated about Eating Disorders? My d. still sees the GP once every 3 weeks and nutritionist for a weigh in. The paperwork is signed so that I can speak with the team if there is an issue.

I would also, in your shoes, try to work on reintroducing the pasta, meat and sugar. We went slowly with fear foods and that worked for us. You could try a laddered approach, that is what we did. So maybe cook a dinner which has a side of some sort of pasta, and encourage her to take just a little. Then add a little more pasta the next time (Eggplant parmigiana with a small side of pasta?) As for the sugar, I did a laddered approach which included: first I served some fruit in a bowl. Then I served some fruit in a bowl with a pastry shell on the bottom. Then I served that with the addition of some cream on top. Then I served a piece of fruit pie. (that had sugar) and so on. I also used honey in different things, smoothies etc instead of sugar.

Anyway, just throwing out some ideas...you have done a great job getting her to this stage.

warmly,

Kali


Food=Love
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Torie
scaredmom wrote:
You say your D is borderline WR. I wonder if she needs more weight. ...

My feeling, from what you have written is that she still needs you to support her big time and longer than you both thought. ...I think the commonalities in the illness, at any age are:

1) get the weight up more, keeping it up
2) Hand over control very slowly. Very slowly
3) challenge ED thoughts, behaviours and "safe foods"



I very much agree with scaredmom.  Especially this: "I wonder if she needs more weight."  The commonest problem with ED clinicians is that they underestimate the amount of weight needed.

There is very little downside to adding another 5 kg, other than the difficulty in getting there.  There is huge downside to NOT adding the last 5 kg for a sufferer who needs it.

So glad you found us here.  This forum saved my d and many others.  Please feel free to ask all the questions you like. xx

-Torie

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Fivril
Hi!

Thank you for all the comments, great suggestions and the friendly welcome. It means a lot.

First of all, I agree that my daughter needs to add further to her weight. She has only just entered the lower threshold for her ideal weight and she needs to ge in a safer place. In essence, we both know that the best indicator for WR would be the return of her period. This month it will be 24 months since her previous one.

What is sad is that we will loose our NHS support in 4 weeks time. My daughter sees an NHS psychiatric nurse weekly and an NHS nutritionist monthly. We have followed the Maudsley approach. I don’t know why they are discharging us at this point in time other than that they believe my daughter will not recover fully but will remain a functioning anorexic.

Over the past 18 months I have also paid privately for talking therapy with a psychologist, and more recently I have found a very good therapist that offers EMDR therapy. So far this has proven the most helpful although it does make my daughter extremely tired afterwards. It deals with past traumatic experiences relating to bullying and broken friendships/love interest. I understand that this will not cure her anorexia but it does deal with a lot of her negative past experiences that is the underlying problem she is battling. We are also lucky that we have a good GP. She will I’m sure agree to do regular weighing for my daughter.

I like the idea about signing a contract on the point of discharge from the NHS. I will put that in place. I also understand the importance of introducing everything slowly. I just know that I will find it a lot harder without the support from the nutritionist especially because she is able to explain everything to my daughter so that it make complete sense! When I say ‘it’s good for you’ my daughter always seems to have a reason why it is not! Anyhow, I stood my ground with her tonight when she had a ‘moment’ and would not eat her supper. It took 30 minutes for her to surrender and eat her plate. I had to challenge the idea that she can only have salmon on days when she is allowed to exercise. Again, this is a thought that has come from nowhere but today I had to put an end to it.

Thank you all for being so understanding. If I have any further questions do I continue to post on this thread or do I start a ‘fresh’ one?

Xxx
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scaredmom
Fivril,
You may continue to add to this thread or start a new one. Whatever works for you is fine.[smile]
XXX
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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scaredmom
Fivril, 
As I see what you have posted, I want you to be aware that although getting her periods back is one thing it also is not the only or best indicator of her health. Some have seen even, when at their sickest, their child's period was still present and regular and did not at all mean that their D was healthy. Now for your D, getting her periods back once lost, is a good sign but she may still need to gain more even with normal regular cycles.
I see a huge positive in your post. It took 30 min to "surrender" ( I like that!) and ate her meal. I think that is great. Only 30 min?! 
Keep challenging like that. We know it is not easy. It takes time and it takes creativity and flexibility. You know her best, she needs you to help her and it sounds like she is letting you help her.
XXX
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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Torie
Wow so great that you were able to get her to eat her supper!  Score one for the good guys!

You probably already know this, but most find that their ED-kids need to regain all the weight they have lost plus an additional amount that they should have gained while they were will.  It is normal and expected to gain a few kg each year through the teen and young adult years.

I wonder if she has had a DEXA scan to see how strong her bones are.  Aside from the importance of knowing the result, that is one of the very few things that can occasionally provide some motivation for them.   

Please feel free to ask all the questions you like.  That's why we're here.

Keep swimming. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Fivril
Yes, Torie, my d had a scan and the results were grim. It did give her the incentive to increase her dairy intake so she is doing better with that. She also takes Accrete D3 for Calcium and Vitamin D.
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tina72
Would it be possible to stop exercise for a time because of the bad bone scan? Many kids here had to stop exercise at all because it was ED driven. Sounds a bit the same with your d...
Keep feeding. There is light at the end of the tunnel.
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Fivril
Re:exercise
My D did stop exercising for nearly a year and is now only doing supervised strengthening exercises. Her issues are more related to restricting food types and only eating certain ‘approved’ carbs/protein. I know exercising is a tabu area with ED but for my daughter it has proven to ease her anxiety levels. She suffers from Post Traumatic Stress also so the approach we take is slightly different to a general ED patient.
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