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

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SueD
Miss  15 has been in phase one of the Maudsley program for nearly 1 year.  We entered phase 2 for a few weeks but she could not do it.  She has put on 5 kg so is nearly weight restored but those last few Kgs shes really resistant to, but she will not talk to anyone about it.  Going by her behaviour she is not wanting to get better yet. We have had her at home for a week, where she put on nearly 2 kg which she has lost. We took her out of school for  2 weeks and managed to get her weight up about 1 kg. Because she was missing so much of school we decided with the hospital to let her go back to school but we would go in and do lunch and morning tea with her. She has managed to lose weight over this time.  The team think she does not have a strong AN voice ( but shes has the Dx of AN)

The hospital teams response after trying everything with us/her is to discharge her in the hope that Miss 15 will jump back into life and thrive, or she will lose weight and be referred back into the service. GP will do 6 weekly weigh-ins.  Our daughter does not want to talk about anything to anybody and shuts us all out. Anyone else been here? What happened?

Her dad, my husband alines himself with the ED and enables her to get away without eating by not watching her or giving her enough food. I and the hospital have tried to make him see, even bringing in another counsellor for a family session and speaking into it but he does not take responsibility for it. He does not see when she tips her ensure out in front of him, he's more focused on talking to the person next to him or being on his phone

I am at a loss of what to do. I'm really tired and nearly ready to get off this ED train, I just want normal back and not to be tired, we have 3 other children at home 11-18 yrs and 3 adult children. Also, I'm 2/3 of the way through a counselling degree part-time and have had to put part of that on hold. The thought of having to do all this by myself with no one to through ideas with and have the support of doing it all is horrible. It feels like there is no hope of getting dh on board with this journey. Anyone else have a dh that saying they are supportive but their actions say something different?

Dh is struggling to come to terms with the changes he has seen in me as I become emotionally healthy through my own learning. We are looking at marriage counselling
So Im seeing the ED has high lighted things in our marriage.

Is there any research out there on the effect a childs ED has on parents marriage?
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tina72
SueD wrote:
Miss  15 has been in phase one of the Maudsley program for nearly 1 year.  We entered phase 2 for a few weeks but she could not do it.  She has put on 5 kg so is nearly weight restored but those last few Kgs shes really resistant to, but she will not talk to anyone about it.  Going by her behaviour she is not wanting to get better yet. We have had her at home for a week, where she put on nearly 2 kg which she has lost. We took her out of school for  2 weeks and managed to get her weight up about 1 kg. Because she was missing so much of school we decided with the hospital to let her go back to school but we would go in and do lunch and morning tea with her. She has managed to lose weight over this time.  The team think she does not have a strong AN voice ( but shes has the Dx of AN)


Was she WR when you started phase 2? Was she eating all fear food without any stress? A lot of us started phase 2 too early and had to go back to phase 1 until they were ready (my hands up).
If she still loses weight although you took over again there are normally 3 possible reasons for that:
1) secret exercising - are you 100% sure she does not do that?
2) purging/vomitting - are you sure?
3) not enough food
How much is her intake at the moment and is she doing any sports in school? My d was not allowed to do any sports until WR but lost weight when she went back to school because of all the stairs up and down and the walking around that took extra energy. We needed to increase her intake so that she was able to go to school. Learning needs extra energy too.
So if she loses weight in school I would take her out again, refeed her to a good weight and then start again or do only half days for some time x. School is really not important, she will not miss so much there at that age and health comes first (that is an important signal for them). AN kids normally are highly intelligent, she will get that stuff later.

SueD wrote:
The hospital teams response after trying everything with us/her is to discharge her in the hope that Miss 15 will jump back into life and thrive, or she will lose weight and be referred back into the service. GP will do 6 weekly weigh-ins.  Our daughter does not want to talk about anything to anybody and shuts us all out. Anyone else been here? What happened?


To get them into life again is a long term thing. It does not happen within weeks. It is not good to weight until she is in a bad state again. Take over with food again, feed her 3 meals and 3 snacks again and supervise her until she is WR and then give phase 2 very slowly a new start. You cannot do things too late with that but too early. It is quite normal that she does not want to talk about anything and there is probably nothing to talk about for her. There are normally no "underlying issues" and she might not even know why she started to do that. Get her WR and she will get her old personality back and see that she was sick.

SueD wrote:
Her dad, my husband alines himself with the ED and enables her to get away without eating by not watching her or giving her enough food. I and the hospital have tried to make him see, even bringing in another counsellor for a family session and speaking into it but he does not take responsibility for it. He does not see when she tips her ensure out in front of him, he's more focused on talking to the person next to him or being on his phone


The dads seem to be a problem here very often, so although that is not good you are in good company with that problem. If he is not able to supervise her you will need to do that or get someone else into the boat. Are there other family members (grandparenst, aunts, uncles) you can ask for help? A good friend?

SueD wrote:
I am at a loss of what to do. I'm really tired and nearly ready to get off this ED train, I just want normal back and not to be tired, we have 3 other children at home 11-18 yrs and 3 adult children. Also, I'm 2/3 of the way through a counselling degree part-time and have had to put part of that on hold. The thought of having to do all this by myself with no one to through ideas with and have the support of doing it all is horrible. It feels like there is no hope of getting dh on board with this journey. Anyone else have a dh that saying they are supportive but their actions say something different?


To be honest, many of us needed to quit their jobs to do it themselves and the best help I got was here on ATDT. Did hubby read any books? I would recommend Carrie Arnolds "Decoding Anorexia" so he might understand how this disease works in her brain and what he needs to do to stop it. If not, ask him to support you with all the other children, give him jobs to distract your sick d and do the refeeding yourself. Someone needs to do it.

SueD wrote:
Dh is struggling to come to terms with the changes he has seen in me as I become emotionally healthy through my own learning. We are looking at marriage counselling
So Im seeing the ED has high lighted things in our marriage.
Is there any research out there on the effect a childs ED has on parents marriage?


Every life threatening disease of a child has a severe impact on a marriage I think. ED destroys families. That is sad but happens quite often when parents cannot manage to get on the same page and blame each other for the illness. It was the hardest time for my marriage too. But we got through it by having a goal together (to get our d back). Now we are closer than ever because we survived that as a team.
Keep feeding. There is light at the end of the tunnel.
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Mamaroo
Hi, sorry it is so hard right now, you are nearly there. This is just a bump in the road and you have the strength to get over it, I promise.

Going into phase 2 when not WR is a recipe for weight loss, in my opinion. My d is WR for 2 years now and although she has options for snacks I still plate main meals (for the whole family, which makes it much easier). Some professionals recommend not going to phase 2 until they are 18 and moving out of the home. My d doesn't mind at all and will now and again ask for something else for breakfast and if it is a normal request, I'll listen to it. For example she was tired of yogurt and muesli, so I gave her a choice between weetbix and nutrigrain and she chose nutrigrain. If she had ask for just fruit, then the answer would have been no.

As for supervising, I did all of it as my hubby focused on bringing in the bacon (I had to scale back on 99% of my work) and it worked well. If your d is throwing out food, you need to supervise her like a hawk. I see she still takes ensures, again from experience, if she is still reliant on ensures, she is not ready for phase 2. It is hard to do this on you own, but can hubby help out in other ways? My h helped with distraction, both with ED d and non ed child. You can come here for ideas and tips. My h didn't read any books or went to all the ed appointments, but supported me by letting me know when I was too soft or slipping somewhere. Everyone has their own unique strengths, you just have to find and focus on your hubby's.

Sending you lots of hugs 🤗🤗🤗🤗🤗
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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Foodsupport_AUS
There is no doubt that when ED hits the family, the whole family is affected in some way or another. There is research confirming this - https://onlinelibrary.wiley.com/doi/abs/10.1348/014466507X173781 along with others, even though it is not an area well researched. It is disturbing that it appears as though you have had ineffective care for 12 months and seem to then be being transferred to no care with a child who is still clearly not well. It may be that she is even more underweight than expected as given she is 15 she should be gaining 1-2 kg per year along with replacing all of the weight loss brought on by her eating disorder. 
It is common and normal to feel frustrated with lack of progress, and even more so when you feel as though you are the only one carrying the burden. 

There have been many parents who have struggled with disunity, some times one parent or the other just doesn't get it, or feels too distressed to be effective in the caregiving role. 

Your D has a life threatening illness. She has the same risk of dying as a result of her illness as if she had a childhood cancer such as leukemia. The longer she has her illness the more likely she is to become chronically ill or to die of her illness. Your exhaustion is truly understandable but that of the team is inexcusable. What resources or other plans are they willing to enact to ensure full weight restoration and support her recovery. Discharging her because their treatment has not worked really can't be justified. Have you contacted EDANZ for some assistance on where to look for care next?
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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toothfairy
Hi Sue and welcome.
Here are a few links hat I hope will help you.
https://aramblingbecky.wordpress.com/2015/02/25/they-have-to-be-ready-to-change/?fbclid=IwAR32gWJ3hRIMid1FuxSSMUuhO5jeHxAItcyl3NBc5IX6Bgo7WUHTMBXN8HQ
Food is the medicine. Recovery is possible.
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toothfairy
https://www.eatingrecoverycenter.com/blog/2015/11/30/the-myth-of-motivation-in-adolescent-eating-disorder-recovery?fbclid=IwAR1sIhP0QZlHBDkWK0wX_E6e88jPO4aohXuSoUKPGpziHefsm71ewShfG-Y
Food is the medicine. Recovery is possible.
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toothfairy
Food is the medicine. Recovery is possible.
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toothfairy
Food is the medicine. Recovery is possible.
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toothfairy
https://www.caredscotland.co.uk/entry-skills/skills-2-2/?fbclid=IwAR3DQra5BDNV25z5bwWnDTdSORSYNNnAdMZl35EAW-ZNzNfJWMsWFXe9c5I
Food is the medicine. Recovery is possible.
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debra18
My husband also did not help out with supervision at all. The few times I asked him to he did not watch her and she escaped without eating. He did not read anything and still doesn't really understand. For me, I just decided to let him be the one to make money and support the family while I stopped working and took care of my daughter and other kids ( I have 7 besides my ED daughter). I don't think he ever understood the stress and anxiety it caused me but I get the support here and realize for him to support the family is enough of a stress for me. This is what worked for my family. As far as what professionals say, you know your daughter best and trust your instincts. In my experience, I plan to continue feeding my daughter for a long time. I found distractions and getting engaged in activities a very important part of recovery but it shouldn't take away from eating. She takes piano lessons and I am always keeping her busy but that takes place around meal times.
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