Registered: 1512477154 Posts: 3
Reply with quote #1
I'm new to the forum and have been struggling lately. My daughter was diagnosed last January at 13 and was almost hospitalized, but we re-fed at home and she cooperated. She was chugging along fine with gaining and in June she started her period and we have been stuck with a couple lb loss, then gaining back. Now she's really fighting and my husband and I have had it. She's keeping enough on to not be in danger, but fighting gaining any more weight. (We're doing Maudsley at home.) She started high school and every time she gets stressed, she fights eating in some form or other. I feel like I'm playing whack-a-mole, and every time I work around or fight one symptom, another pops up in its place. I have three other sons who are having to see all her anger and fighting, and it's so hard on them as well. I'm just so sick of the same sound bites she keeps saying, and I'm sick of the same fights all the time. I really resent everything she is putting our family through, and she's stuck and keeps fighting. I guess if I thought that she was trying, I would have a lot more patience, but she seems to be stubbornly fighting to keep ED around. There's only so much verbal abuse I can take and it's getting harder and harder to forgive her. I know I should be separating her from the disease, but, like I said it's getting harder to do the longer this goes on. Any suggestions would be appreciated.
Registered: 1496061527 Posts: 409
Reply with quote #2
a very warm welcome from Germany! So glad that you found us here. You will get a lot of help from all the wonderful and experienced parents here. My d was diagnosed last January, too, but she is 17. Great that you could avoid hospital (we could not) and that she got her period! Stress is a big trigger for AN patients but you cannot put them in wadding, so they have to learn to cope with stress. Easier said than done, I know. But what I experience right now is that with weight restoration my d doesn´t fight stress with not-eating any more. She is still mentally up and down then, but she knows she has to eat. " She's keeping enough on to not be in danger, but fighting gaining any more weight." You are doing FBT - are you in Phase 2? Is she plating herself or do you still plate her? If she is plating herself and not eating enough to gain up to a proper WR (including change in behaviour, that is better sign as any target weight) you should think about getting back to phase 1 and plate her at least lunch and dinner. If you are still plating all, than you will have to add more calories. She should be blind weighed and not know her actual weight so you will have less fight with that. Until she is really proper WR you will not see end of that fights. Reading your post I would think that she is not WR. At that age she should not decide wether she will gain more or not. You are in charge for that. If she is not at a healthy weight, she has to gain more. Did you check if she had grown? Sometimes it is only a bit more than the target weight. In our case at target weight from IP nothing changed. We put a bit more weight on (in 500 g moves) and at 1 kg above target weight there was something happening. We have less fights about food now, a better mood, just a few AN behaviours left (working on that). So a bit more weight might change your situation and I think it is worth a try. Add butter, cream and canola oil wherever you can and see whats happening. Tina72
Registered: 1438737617 Posts: 1,405
Reply with quote #3
I'm just so sick of the same sound bites she keeps saying, and I'm sick of the same fights all the time. I really resent everything she is putting our family through, and she's stuck and keeps fighting.
I once had a therapist who pointed out to me that it takes two to have a fight. She is not going to change what she is doing because it sounds like it is working to keep you occupied and not requiring her to eat and become weight restored. You can however change how you are dealing with the situation. With my daughter, I served her the food she was expected to eat. If she protested, I simply said "I'm giving you what you need." If she started into one of her sounds bites, I just told her I was not going to talk to her eating disorder and ignored anything else that came after it. If she continued, I'd turn on the TV or the radio, anything to get across to her that I was not having this conversation with her. If she chooses not to eat, then she sat there until the timer went off (I couldn't sanely sit at the table for hours on end) and she got a supplement to make up for the calories she left. Others here sat with their kid until he/she ate. If I finished before my daughter, I'd often have a book on hand to read. It is extremely hard not to engage in those discussions and arguments but it can be done. I never did tolerate any verbal abuse. What you allow will continue when it comes to behavior like that I've found. It is exhausting and often thankless work refeeding (although the end result is more than worth it). Maybe you need to go back to basics with just getting the food in and weight on with life stopping until she does.
Registered: 1512477154 Posts: 3
Reply with quote #4
Thank you for the replies. You are correct that she's not weight restored yet. We had started trying to get her to take some control back, and that's when things went downhill. We've told her that we're back to plating her food and going basically back to basics, so hopefully that will help. I will try incorporating your suggestions.
Registered: 1496061527 Posts: 409
Reply with quote #5
that is a very common mistake and a lot of us did make it (my hands up, too): giving back freedom with eating too soon. It is senseless and dangerous to do this before WR and after getting there it is senseless until you see a change in behaviour. Then wait until that change is lasting and fix and then you can start to give her back freedom in VERY TINY STEPS. For example you start with allowing her to pour her own milk or to choose one joghurt out of two varieties. You cannot do this too late but you can do it too early. My d is WR for 5 months now and she changed behaviour 2 months ago. We are still plating lunch and she is plating the other meals and snacks but still under our eyes. She has to learn how to plate a good amount again like a stroke patient has to learn to speak again. So get back to plate her and get more weight on. And be careful with target weights set by professionels, they are often way too low. If you have a growth curve look where she has been in the last years before AN and that is the minimum where she has to be (for ex when she has been on 50. percentile she has to get back to 50. percentile oft actuall curve, if it was 75. percentile she has to get back there). Every body has a genetic "good weight" and you must get her there to see the light at the end of the tunnel. Tina72
Registered: 1498065245 Posts: 22
Reply with quote #6
Hi deetz, I haven't had a chance to read the other responses but I wanted you to know that I fully identify with where you are at. Actually when I started reading your post I thought ' I don't remember posting this...did I post this?' lol. Then I looked closer and realized that it wasn't me but it sure sounds like me. My d was hospitalized last Feb. Stayed IP for a month. We are doing Maudsley and fbt at home. She started her period two/three weeks ago and things have been unraveling fast for her/us. She is not weight restored. My other daughter has had enough (she also had an ED two years ago). I have had enough. I love her so much and know I won't give up but I am so tired and becoming angry. Feel free to pm me. I am thinking about you today. <3
Registered: 1512477154 Posts: 3
Reply with quote #7
I thought we had started giving it back too soon also, and this just confirms it. We're taking back plating, which is hard, but that's what I feel we need to do. I'm not the only one with these feelings. My patience is practically non-existent right now, but the support helps immensely.
Registered: 1396016102 Posts: 4,593
Reply with quote #8
Originally Posted by
deetz My patience is practically non-existent right now, but the support helps immensely. I remember that feeling!!! One thing that really helped me have more patience was when one of the veterans here pointed out that however awful this was for me, it was much, much worse for my d. This vile illness is incredibly cruel. Hang in there. It really does get better (but it might get worse first). xx -Torie __________________ " We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡
Registered: 1435435970 Posts: 305
Reply with quote #9
Deetz, it's hard to believe, but the ED is making her be so awful. She wasn't so awful before ED, right? And she didn't choose ED, she really didn't. So she isn't choosing to be so awful and unbearable, it is the ED making her that way.
My d was so venomous and violent, a complete transformation. Now (knock on wood) she is a normal, sometimes-challenging and normal-awful, teenager. Some on here have put it this way: imagine someone is holding a gun to your beloved d's head and making her talk and act that way. How would you respond? You would 'forgive' everything because she wouldn't really be doing it of her own accord. When the ED lets go some, you will see it. In the meantime try not to blame her for being in its clutches, it's really not her choice nor her fault.
Registered: 1396918777 Posts: 601
Reply with quote #10
Welcome to the group though so sorry that you need to be here. Giving back control to soon is a very common mistake so don't be hard on yourself. You just want your D to have a normal life. I too thought that if my D could go back to having a normal life after missing two months of school for a php program, she wouldn't allow the ED to take over again but I soon realized that it was not in her power at the time. I am glad you are going back to plating her food. Keep it up until she is weight restored or even a few pounds higher before you give her back any controls. Be firm in your rules. Breakfast must be eaten and then she can go to school. Can you meet her at school for lunch? Get smoothies going asap! They were the single most helpful factor in getting our D's weight up.
Hang in there!
Registered: 1284535839 Posts: 3,232
Reply with quote #11
Welcome to the forum. You have received some great advice already. It sounds from your writing that you kind of knew what needs to happen, but as usual the resistance from your D and the often the lack of support from treatment providers makes us second guess ourselves. Absolutely take things back and do what it takes to help get her fully weight restored with that bit extra given her age for growth.
The length of time it takes to get better is very wearing and yes at times it can cause a lot of resentment. Even when we know they are ill and we know they have no control over it, the apparent determination to continue to be ill is a source of frustration. It is important to remember however that even this is part of the illness. It may be sometime still before she is able to help to fight this herself and unfortunately it does all come back to us to fight it for them. I am now many years down the track. My D is now 21, ill at 13 too. She is now at a point where she is motivated and willing to fight but even that is a dance between us, I can see where she is struggling and she has trouble doing so. She still has to try things out and see how they work for her. __________________ 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.
Registered: 1512653081 Posts: 2
Reply with quote #12
Hello to all. This is my first post and I am thrilled to have been directed to this on-line support forum. Deetz...my heart breaks for you. Our college daughter recently had to come home early for the semester because of her ED. She has had alot of anger, denial, etc, but we recently had a breakthrough. I had been losing sleep, overwhelmed with fear and anxiety for her, feeling stress and worry. The ED was putting strain on my marriage and on the rest of our family (siblings). After a time of fervent prayer, I told my daughter that I was surrendering her to God. I told her that I loved her and I was going to help her any way I could, but ultimately I was surrendering her in prayer to God and trusting Him. A few days later she told me how freeing this was to her. She had been feeling so much guilt/sadness/shame knowing that her actions were hurting me. When I surrendered her, she said that it really helped her. I know that there are no easy answers to this ED...believe me, I know all of us wish that there were! But, I just wanted to share a little something that was a turning point for us.
Registered: 1482371611 Posts: 50
Reply with quote #13
You've received some great advice. One thing that helped me when I was at my lowest ebb and was feeling worn and angry was reading 'Throwing starfish across the sea' by Laura Collins and Charlotte Bevan. It's a small and very readable book that never failed to make me reset my mind and keep on going.
It reminds parents why they need to 'put on their big girl pants' and keep up the amazing yet relentless work they are doing.
It's def worth a read. I kept going back to it every time I felt like running away and giving up