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

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runmum
D diagnosed AN in August and started treatment in September. We had taken over her food in July so she has been restoring for 4 months now, and is well on her way to WR. Her treatment is an appointment with a psychiatric nurse once a fortnight, a dietician once a fortnight and FT once a month. In spite of her weight gain and treatment, her mental state deteriorates by the day... Should her appointments be more frequent? I am doing all I can but it isn't enough 😢 We are in the UK so have the NHS. Maybe this is all their resources can stretch to? I thought NICE recommended more frequent appointments so I am interested to hear whether their recommendation actually happens in some areas.
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tammy
This is my first time posting. We too are in the UK under the NHS. We have a very similar story to you. Our son was diagnosed in August aged eight. We started re feeding straight away using Tips from Eva Musby book and videos. We were initially denied FBT as serivices in our area were overstretched and our son had not lost enough weight! We finally started FBT two weeks ago. We are getting weekly or two weekly appointments at the moment. Our son is now 105 weight for height but not yet back in historical growth curve. His behaviour has deteriorated significantly over the past few weeks and is having at least daily meltdowns where he lashes out at us, tries to damage things and sometimes hits himself. Our FBT therapist also works with some children in the autistic spectrum and said that some of the traits she has seen in our son are very similar. She is going to discuss with the psychiatrist. I am confused now as to whether ED causing behaviour or whether he is indeed in the spectrum!
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mjkz
Hi Tammy.  Welcome.
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I am confused now as to whether ED causing behaviour or whether he is indeed in the spectrum!


The easiest way to answer that is did he show the same behavior before Ed entered the picture?  If you are only seeing the behavior now, I would say the chances that he is on the spectrum are slim and you are seeing Ed behavior.  Weight restoration is only the first step.  It takes 6 months to a year for true brain healing to occur so hold fast and keep feeding.  Newly weight restored kids need higher calories for 6-8 months to maintain their weight and of course he needs to keep gaining for growth.  A lot of parents have found that they need to get their kids above historical weight curves to truly see changes in behavior.  I hate to say what you are seeing is normal but it truly is normal for kids who have an ED.
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tammy
Thank you mjkz. He has always had little quirks and was prone to tantrums but nothing like these ones. The school have never mentioned autism as a possibility as he does very well in school, is well behaved and he is very sociable with lots of friends. He does not seem to have sensory issues and has always adapted well to change. He has always been a bit of a rigid thinker though.
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EC_Mom
Tammy, I suggest starting your own thread. Then you can post updates and so forth. 

Welcome to both of you! You found the right place. People on here helped me save my d. It was really hard but you will find good support here.

Runmum: Good for you for taking over in July and getting on the way to nutritional rehab! Can you say more? How are you feeding her, how much has she gained? Classic FBT is once/week. However, my experience was that those appts did not make anything much easier. It's all about feeding and breaking the little rituals.

Tammy: It's awful with this illness, the meltdowns and violence. It makes sense to me that his behavior is getting worse because you are closing up the holes that let ED run the show. ED will be very, very angry when you require your son to eat. We had a really awful phase of violence. Can you get in touch with local police to inform them of what is going on, and then call them when things get scary? Some people on here point out that if you are getting flak, it means you are hitting the target--so the violence is scary but not a sign that you are doing something wrong. You of course need to keep yourselves and your s safe, and that is something that requires some compassionate firmness and possibly outside help, like law enforcement.
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tina72
Hi runmum,
welcome here! Appointment frequency seems to be different in every state/country and health system.
We had FBT appointment every second week for 1-2 hours. But looking back I would say that this was mostly for us to keep us on path and to get tips how to manage eating. D hat psychologic appointments in IP but that was lost time before WR and now after 5 months WR she doesn´t need them any more.
Appointments with dieticians should be only for the parents. No discussion about weight, calories or food in front of the patient. Good dietitians help finding a good meal plan and give tricks to gain weight. Bad dietitians make you crazy and should be fired [wink]
Her mental state will be normal for that state. It needs 6-12 months truly WR to heal the brain. More appointments will not change that. Time and food heals. Try to be a bit patient. And try to see the little things in progress, we didn´t see them at the beginning of the change. Less cutting for example, less body checking. It will come.
Ask whatever you need, here are always nice people to help you.
Tina72
Keep feeding. There is light at the end of the tunnel.
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tina72
Hi tammy,
welcome here!
We too heared this autism stuff from the "professionals" and I see it like EC-mom: if he had autism you would have known this before ED. Most ED behaviours are very similar to autism behaviours and it needs some profession with ED kids to see that.

Your son is doing exactly what most of the kids here did in this early state of FBT. ED sees that you are fighting it and it is quite upset...
That is not your son behaving like this, it is ED. This damn disease tells him to do all those things. Try to keep him safe, try to get things out of the way that could been thrown or used for self harm. Plastic bowls and plates are your friends for a long time...

The only medicine is food, food and extra food. And staying calm, confident and compassionate. At the beginning there are daily meltdowns. Then 3 times a week. Then you might have weekly meltdowns. It will get better. Keep on going and refeeding unless he is feeling better and behaving normal. No matter what weight is needed for that, that is very different.
Ask whatever you need, here are always nice people to help you.
Tina72
Keep feeding. There is light at the end of the tunnel.
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tammy
Thanks Tina and EC Mom. Sorry runmum for hijacking your post! Wasn't sure what to do as first time on a forum!
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juditab
Runmum and Tammy,
My daughter's therapist told us that if she were happy with the refeeding treatment, then we weren't doing it right. It turned out that every time she did seem happy with the treatment, she had figured out a new way to cheat.
We had weekly appointments until she began to have suicidal thoughts, the we upped it to two times a week. We are in the States and paying ourselves for everything insurance doesn't cover. We found that every time there was a change, increased calories or increased meal supervision, the rage started all over again. About half of each of our therapy sessions is for us, her parents, and we discuss strategies, cheats, moods, socialization etc. A lot of what I have learned in the therapy sessions is also discussed in this forum and at least in our case, serious psychological treatment for her won't begin until sometime after WR, because in the state she is in now, no logic matters but her own. Good luck to both of you.
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mid73
Hi when we were doing FBT UK Camhs we had weekly appointments sometimes twice a week if things were bad. Sadly FBT didn’t work for us and my daughter did most of her weight gain either inpatient or half at home half in patient. Since then we’ve had weekly weigh ins or fortnightly depending on how things are going. Only now 9 months after hitting 100% weight for height is my daughter becoming more receptive to the idea that she may need some psychological help.
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martican
Hi runmum - I echo what Tina says about the appointments. That is what worked with us. Is the psychiatric nurse ED trained? Is your D on any meds? I am in Canada, so the systems differ.

Tammy - my d is autistic (high functioning), and we have known that since she was 4, she is 15 now. Regardless, it doesn't matter with the refeeding. Tantrums, screaming - all goes the same for neurotypical and on the spectrum. If you want to pursue the diagnosis, in case he ever needs any support in his functioning, might be a good idea but for now, I would just keep feeding.
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runmum
Ec_Mom - my daughter has gained about 8kg in 4 months. We started on 3 meals and 3 snacks. However, the evening snack became very distressing so we have had to stop that and add the calories elsewhere.

Tina72 - we have had 2 FBT appointments (45 mins each) so far. The 1st was a repeat of our initial assessment, plus pushing us (my husband and I) to admit what a strain it is for us. This felt awful in front of D. I went to the 2nd appointment alone since (1) the 1st appointment had felt like a waste of time and (2) I was told that that was the only way I could speak to someone about what D's treatment plan was and raise my concerns that it wasn't working.

We are managing to keep D eating. The main problem is she gets very distressed with feelings of worthlessness etc, especially in the evenings. She is waiting to see a psychiatrist about getting medication, but I believe that will take several weeks to work? She has started hurting herself a little and we obviously need to put a stop to that asap.

D's appointments are for her and there aren't appointments for parents. I need to be more confident but feel out of my depth. I am sure many of you have felt that way!

Thank you very much.
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tina72
Hi runmum,
8 kg in 4 months is brilliant! You have done a really good job!
We did also only 3 meals 2 snacks because the frequency of meals was too stressy. We added it on the other meals and it worked. The evening snack is no "must have" I think.
2 FBT appointments is not so much so far and maybe you could give it a chance to work for you. We found it also very stressy to talk about everything in front of our d and so we splitted the lessons and had time with her (to show her we are on the same page with therapist and that we know what we do is right) and without her (to talk about tricks and progress and to vent [wink]
"D's appointments are for her and there aren't appointments for parents." What do you mean with that? Are there other appointments besides FBT? And you don´t know what is going on there?
"The main problem is she gets very distressed with feelings of worthlessness etc, especially in the evenings." That is normal in refeeding phase, because she feels guilty about what she has eaten the whole day and it is normal that it increases in the evening. Try to find some distraction then. We watched TV together (best worked funny soaps) or played games until she was tired enough to go to bed.
We also had problems with self harm (she learned that in IP). We experienced that she didn´t know where to get all this anger and blame on herself about what she has eaten and that was the cause why she had to punish herself. So we bought a punching bag and helped her to hit that instead of herself when she was angry. That helped a lot and stopped self harming.
I must say I used it a lot when d was in school...[biggrin]
Try to do something nice for yourself. A short walk in the winter sun or a bath can do that. It is a long term run. You need time and confidence. Read the posts of the parents that are on the other side of the tunnel. That helps a lot. You need some hope. It will get better. The brain needs a lot of time to recover. Someone said to us it needs at least that time it had to get into AN. In our case that was about 9-10 months. And now after 11 months refeeding and 5 months WR it is a lot better now. Our d now sees that she needs help and that we are helping her and that eating is necessary. She still has some fear foods and can not make good decisions totally on her own but she can manage 3/4 of her day without help. She is in school again and meeting her friends and having a social life. She makes plans for the future and food is not the only thing in her head. Comparing to last year I think we will have a calm and nice christmas this year.
Keep on going. You are doing the right thing. You will get there, too.
Tina72
Keep feeding. There is light at the end of the tunnel.
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runmum
Thank you so much for the reply, Tina.

Our team don't think we should have tricks to sneak extra calories and prefer to promote openness, not hiding anything from D.  It means they don't give any help about boosting calories. I am managing that myself which is fine. I am sure we all agree that the psychological aspects are way harder than putting togethet a high calorie meal!

D is now on sertraline. I have asked for more therapy and will consider private treatment if the NHS can't offer what she needs.

Like all AN sufferers, she is dreading Christmas. Not just the food, but receiving presents she thinks she doesn't deserve. So sad 😢

Thank you for the support.
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tina72
"Our team don't think we should have tricks to sneak extra calories and prefer to promote openness, not hiding anything from D."
Really???? I hope you don´t listen to that. That is not very professionell...
"It means they don't give any help about boosting calories. I am managing that myself which is fine."
That is really bad, that they don´t help you with that. And great that you do it yourself. Come here and ask, we can help you with that.

There is nothing lost if you don´t get more therapy for her at the moment because without proper WR therapy is senseless in my eyes. And after proper WR we in our case didn´t need it any more...[wink]
Christmas is a big problem, I remember last year when it was so sad and she felt she didn´t deserve one gift and had so many for all the others, it was so sad.
Looking back I would have done it in another way:
Could you think about let every family member pull one name of another one out of a sock or a box and there is only one gift for everyone under the tree this year?
Or could you ask the others to spend some money for your d that goes to her bank account and she gets only one gift so she will not feel so overwelmed by this? I think it is a bit like first christmas at age 1 when they don´t know what all this means and cannot understand all that and are content with one gift.

I send you a big hug from Germany. You will get that and you will survive this Christmas. And next year it will be much better. We seem to have a quite normal Christmas this year and my d is only a bit frightened about all the food but seem to manage this up to now (knocking on wood). I hope you can get this next year, too.
Tina72
Keep feeding. There is light at the end of the tunnel.
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mjkz
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Our team don't think we should have tricks to sneak extra calories and prefer to promote openness, not hiding anything from D.  It means they don't give any help about boosting calories. I am managing that myself which is fine. I am sure we all agree that the psychological aspects are way harder than putting togethet a high calorie meal!


Actually I wouldn't agree with the advice you've been given.  My daughter would never have been able to eat nearly enough to get her weight recovered without added things in her food and you can't start dealing with the psychological aspects until they reach a good weight so at the point you are at right now, putting together the high calorie meal and getting it into her body is the most difficult part.  The faster you restore weight, the quicker you get her brain to start healing and dealing with what is left over after she gets to a good weight.
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Foodsupport_AUS
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Our team don't think we should have tricks to sneak extra calories and prefer to promote openness, not hiding anything from D.  It means they don't give any help about boosting calories. I am managing that myself which is fine. I am sure we all agree that the psychological aspects are way harder than putting togethet a high calorie meal! 


This is a common thing we hear, particularly in the UK. It seems to be that some teams can't decide what FBT really is. By adding in a dietitian and letting the person with ED in part negotiate their meal plan, if anything it is increasing the persons anxiety and making it even harder for them to do what needs to be done. The point of charging parents with re-feeding is to remove this responsibility from the young person. If parents are in charge there is no need to "boost calories" because the meal is the meal as it stands, and taking the decision making out can be really helpful. This was something we had to battle, my D fought hard to maintain "control" of her food intake and unfortunately our team frequently involved her in the decision making. In the end we had a weird situation, my D deep down knew I was adding butter etc. to all of her meals. She tried to pretend she didn't know, as it made it easier for her to fight her eating disorder. When challenged I would let her know that she was being fed what she had on her meal plan. It is all out in the open now, but she did get weight restored this way, there are no trust issues. She knows that it was done to help her get where she needed to when she could not do it herself. 
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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tina72
When she is so frightened about food it will release her NOT to know what is in there.
We are in phase 2/3 now and my d serves herself breakfast, snacks and dinner but I still plate lunch and she often said that this is the easiest meal for her and she eats it with great pleasure and no ED behaviour at all because she doesn´t care how much it is and what is in there.
Deep down in the illness she cannot be compliant with all that addings which are needed to gain weight and why do you should have all these battles if it is not necessary?
Why do you should make her anxious about what is in there if that is not needed at all?
Ask that your team. Real FBT gets the parents in charge. 100%. That is necessary and that is evident based. I would no longer discuss about that, that is wasted time.
Tina72
Keep feeding. There is light at the end of the tunnel.
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runmum
Thank you all for your replies. I totally agree. Your replies give me more confidence to challenge the professionals. D is constantly wanting little food switches and the dietician says fine as each one is little, but I think it is the AN chipping away at her diet. On point of principle, I refuse but it is difficult being contradicted by a professional.

Regarding therapy, I am still confused 😐 but I guess it is different for all. I feel like we are drifting and D is deteriorating mentally while there is no plan. I will be assertive and get a plan of action!

Thank you for the advice. It is much appreciated.
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mjkz
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D is constantly wanting little food switches and the dietician says fine as each one is little, but I think it is the AN chipping away at her diet.


It sounds like maybe you could do better without a dietitian or you meet with the dietitian rather than your daughter.  It is so empowering when you realize that professionals work for you and you get to choose what part is useful and what is not.  You can say to the team that you don't want to work with a dietitian at this stage and maybe work with her when your daughter is farther along but you have the power to say no to the parts of the team that are not helping right now.


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Torie
runmum wrote:
Our team don't think we should have tricks to sneak extra calories and prefer to promote openness, not hiding anything from D.

 
Oh good grief.  Restaurants load food up with butter, cream, and other fats and also salt to make it taste better.  Does that mean they are using "tricks"?  No, they are doing what they need to do to keep their customers happy.  I hate it when the so-called professionals call this "sneaking."

This is hard enough for those lucky enough to find helpful help - the last thing we need is help that is worse than no help at all.

Keep swimming.  xx

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