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

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sunny6
Our d has purging type RAN. For the last year, we have sink drains closed and no toilet flushing and monitored her for 1.5 hours after a meal. However, we still see purging after that timeframe. We don't know how much. Usually it is a small amount (like a few mouthfuls), but it is still whole food. How do we stop this? It was better for awhile, but as we moved through stage two and tried to give her a little less supervision it has picked up, so I have gone back to 1.5 hr supervisions. We obviously can't follow her through school or get up much earlier in the morning to extend supervision as she loses the sleep she needs. I know that any showers after breakfast or before 3 hours after a meal will require supervision. I don't want to have to stop outside activities as they do help her enjoy life. The therapists have all said 1 hour supervision which clearly isn't enough. Any other ideas would be appreciated.
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tina72
Hi sunny6,

I am sorry I have no experience with purging, just what I heard from others. There are many cases when 1 hour is definitivly not enough.
Questions:
Is she WR? If yes, are you sure with it?
Is she maintaining weight or still gaining?

I hope some other parents with more "purging experience" will join in soon.
Tina72
Keep feeding. There is light at the end of the tunnel.
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sunny6
We had her 3 kgs over where the therapists recommended earlier in the year. During an IOP stay, her weight reduced slightly but stabilized and so she has been hanging around there. However, based on behaviors and thoughts, her fbt wants her back up to the earlier weight. The last week, we have seen weight gain, but not yet where she needs to be.
While we can get some weight gain, it depends on how much she is purging. Generally, the restriction is the cause for no weight gain. Usually, purging at 1.5 hours isn't going to stop gain, but if we reduce the supervision to under an hour it can. The behavior displays much like regurgitation (think reflux). Unfortunately, the purging has been present at all weights. It is one of those behaviors the has lingered. So many behaviors have stopped, but a couple. I need new ideas to challenge it.
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tina72
Was she purging at IOP too?
Do you replace food after you find out that she has purged?
Purging seems to be really hard to stop and it seems to need a long period of supervision.

Maybe get back to stage 1 for some more time? Many here experienced that they introduced stage 2 too early (my hands up).
Keep feeding. There is light at the end of the tunnel.
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sunny6
Yes, she has purged through the hospital and IOP. When I brought it up, they either said 1 hour should be enough or said they would extend supervision slightly, but most of the time, they went with the 1 hour rule. We have been in stage 1 for a year concerning the purging. Every drain is closed and all bottles/glasses checked and she is at 1.5 hours supervision. Whenever we try to move to stage 2, in our case, 30 min to 1 hour of supervision and then allowing some freedom in bathroom, but still no flushing toilets or running drains, she will find a way to purge. She knows that food is added when we find it, consequences result in longer supervision or monitored showers even after 1.5 hours. I should add that she has been tested for reflux, that is not the issue
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tina72
So you seem to do everything perfect. I hope some others will come up with more ideas, soon.
Only thing I can think about now is that maybe she is still not on a healthy weight. Does she drink smoothies? Can you use Benecalorie to get a bit more weight on? Maybe she needs a higher level to start brain recovery.
How is her mood? Still very ED driven or back to normal?

Sounds not very good that the IOP discharged her still purging...
Keep feeding. There is light at the end of the tunnel.
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scaredmom

We did not have purging. So just throwing out ideas.
Purging releases a lot of endorphins (the good feeling hormones). I wonder if doing something after eating that is pleasurable to her may help to distract,make her feel "good" may work. You know her best what do you think may work? You may have already done these things- my apologies if I am recycling ideas.  Reading, walking with you, (not too much) take care of an animal, a small job where you pay her for it? 
Try to extend her time to purge. So, if I understand correctly, she still purges 1.5 hrs after eating? Try to coach her to not purge until 2 hrs etc.... ?
For times when you cannot supervise, I am really not sure what you can do? I know you want her to keep on with her outside activities, but wonder if she is so ill, you may need to, she is obviously struggling as are you. I feel the quicker you get this to stop by all means available even if her normal life has to be put on hold, the better. Just my opinion and others with more advice and experience, will be here to offer up more suggestions.

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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sunny6
Thanks. Yes the purging was under control before IOP. We had to do IOP for other behaviors. We think her weight is a bit too low as we have seen some increasing struggles the last month and a half. She has slipped out of range a few times in there and then gained it back. Just can't seem to get back to where she was pre-IOP. They all believe in FBT and full wr, it is just that the IOP had a different target than the FBT and so we are working on moving to FBT recommended range. It seems that when school started, the behaviors have creeped in. She really has come a long way. We received notice that she wasn't eating all of her lunch and we gave her the week to get it corrected. She has been able to do that. She is also shaking her feet and legs a bit less. So, she is learning to get some control and I know it takes time.
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sunny6
Thank you. Yes, I would agree that the weight is not there and so would our FBT. We have been working the last two weeks to move it up. Our house has been an inpatient facility for 10 months. She was under 24 hour supervision and meals didn't count unless we saw them. Only since the start of school at the encouragement of therapists did we allow her to eat lunch in the cafeteria supervised and try to reduce the monitoring time after meals. In the last month, I have gone back to full supervision in the house. She asked to take showers at night to relieve anxiety and I wanted to not go back to watching her shower as I have for the last 10 months, so I allowed it after 1.5 hours after eating. I noticed the material in the drain. Obviously, showers after eating will be observed now or we will return to showers first thing before eating. I have slept with her for a year now. It is not easy on the marriage. I took as much time as was allowed and so did my husband. We are exhausted. I have to start a new job and have family ready to come in, but she can get past my husband so I am not sure how well family will be able to monitor her. You are right, unless you live it, you have no idea how sneaky it can be. No one can agree where she needs to be and it is clear that where she has been since leaving IOP is not it. It is so frustrating that she knows what she needs to do and can do it, but other days cannot. It is such a mental game to out guess the illness. Even a simple request of drinking green tea has to be denied because the ED thinks it could cause weight loss. I haven't gotten a break in a year and am tired. I am the only one who knows the tricks and can be in the bathroom. I am just looking for new ways to undo the illness.
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scaredmom
sunny6, 
It is so hard. It does wreak havoc on all our relationships. I know it is exhausting and hope that your family members can give you all the support you need and that you can take a break for yourself too

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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tina72
So this all seems to have increased with school and eating lunch there. Maybe that is her sign that she is overwelmed with that?
Another idea: school and learning takes a lot of power from them. The brain might need 300-500 calories extra now, especially in fat and glucose because the brain runs on that. Is she having at least 30% of her calories in fats? Is she eating sugar?

So my first idea would be to get her weight up. How did you set the target weight? Do you have historical weight/growth charts to rely on?
Does she drink smoothies or milkshakes already? Can you sneak some cream or rapeseed oil in there? How can we help you to get more calories into her although she might purge some?

I would definitivly refuse showering at night, that is an ED behaviour and not normal. Maybe it will stop some purging if you just stop that. In the nights she should sleep. If she cannot sleep well because of too much anxiety, have you already tried a weighed blanket? Some families had progress with sleeping with that.

I can imagine that you have no power left and are done with that all. But you already have achieved something. You have gone some way through that damn ED tunnel and maybe you just need to go on for this last bit of way. Try to get some time off with help from family or friends. You really need to do something nice for yourself and hubby. Maybe you can have a date?

Tina72
Keep feeding. There is light at the end of the tunnel.
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sunny6
Yes, I agree that some of her anxiety is social. She really likes her school and friends, but the perfectionism is certainly there. We do have her growth since 6. The arguement this summer came from the fact that she stopped growing the last year and was 2 inches shorter than expected. She has since grown one of the inches and I am a bit suspicious that she is growing again and so her bmi is out of alignment. She has a high bmi need. We have talked to UCSD this year and are giving some serious consideration. There are some things she wants to do in the near future and has been told that of these behaviors are there, she won't be able to participate. The fear of eating lunch with me again has seemed to give her incentive to eat lunch. The calories are tough. I have found a way to make high energy meals and snacks that are not liquid based, but milkshakes are a no go. She can drink it and be sitting on the couch with us and it comes right back up without any effort. The IOP believes this is a brain issue associated with anxiety and feeling full. It really appears that it is something she cannot control in terms of food coming up, but she can chose to swallow it rather than expelling it. They are hoping as she manages her anxiety, this will lessen. We still call it purging as it can be a whole meal or a single mouthful.
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tina72
That is quite possible that she will grow again. My d did not grow for more than 4 years and then grew 1,5 cm this spring at age 18!

They all have problems with social anxiety and perfectionism, that seems to be part of their genetical character. I have a friend who´s d is purging too and I wrote her and I hope she will be here soon to answer you, but she is off at the moment.

So sorry that you are having such a hard time. Purging type seems to be the hardest one. I am blessed that we did not have any purging. My d told me she tried to do it but was not able to.
Try to keep on swimming. I know it is so hard... Try to get some distraction for yourself.
Tina72 xx
Keep feeding. There is light at the end of the tunnel.
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yellowcaty
Hi sunny6

I just wanted to let you know that you are not alone and I really feel for you. My D purges and it is such a difficult thing to stop. She has been in IP for 6 months and still purges when she comes home from leave. Before IP we couldn’t let her have any time alone. She spent all day with me and I stayed outside the bathroom with the door open when she used the toilet. She was only allowed to shower first thing in the morning. Even after all that we would find that she had found a minute alone and purged into a bottle or something else. She would still manage to purge hours after eating. In IP she still doesn’t have any bathroom privacy after all this time and is on 5 minute observations.

It is such a difficult thing to stop and I would urge you to get her more support. Have you considered another IP stay? Is she seen regularly by professionals? Does she binge? My D doesn’t. I think a lot of my D purging is to do with dealing with her emotions. She uses vomiting to rid herself of negative feelings as well as a way of restricting. She is potentially being tranferred to another unit where they can offer her more continuity with therapy as she is nearing 18. I’m hoping that it will be the therapy that begins to make a difference

I’m sorry that I can’t give you a way of making it stop, but if you just need someone to talk to feel free to email me.
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LaurieW
Hi Sunny6 -

Dealing with purging is so hard - they get so crafty!  I have heard of people purging out windows or into potted plants.  My daughter learned to purge while sitting on the toilet and bending over to vomit between her legs while flushing the toilet to cover the (very minimal) noise it made. that way should could purge at school w/o raising suspicion of anyone who wandered into the girls room.

Res treatment with a locked bathroom and an attendant in the room whenever she used the bathroom helped a lot.  Making sure she started the day with a decent breakfast also helped.  Her worst purging happened when she skipped breakfast and lunch and than would be so starved she would eat a "full meal" or a forbidden food later in the day. Keeping the blood sugar stable seems to help reduce the purge urge for my daughter.

I am sorry your daughter is in a bad place now.  Try to find some peace for yourself.  Your health is important too.
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Francie
Hi Sunny, I'm sorry for what you're going through. Living with purging is hell on earth! Watching any of our loved ones engaged in ED behaviors is hell on earth.

My 21-year-old d purges in our home with food she purchases from her own earnings, and in a bizarre twist of our parental role we ask her to wait a couple of minutes before beginning and to limit the time she spends on her binging! Her habit is so entrenched we feel powerless to stop it. Instead, our goal now is to remove 'sneakiness' from the list of symptoms of this illness so we can maintain an open dialogue with her in hopes of encouraging change and recovery. 

My d will engage in therapy and treatment. She's seeing a psychiatrists, dietician, therapist, and has recently been ordered to see her pediatrician on a weekly or bi-weekly schedule to monitor her health as it's compromised now with the frequency of b/p behaviors ocurring multiple days a week, multiple times a day.

My d has felt dizziness and shakiness as a result of long b/p sessions but she still hasn't stopped. 

Right now my d is engaged in binging a few feet away from me in the bathroom behind a closed door. Why? Because I just told her if she wants to take my car to visit a friend tonight she needs to follow her meal plan, and she refused. She has actively chosen to binge and purge and skip an overnight with a friend instead of following her meal plan. [crazy] Maybe I should have asked instead of demanding? I don't know.

Again I say, living with purging is hell on earth, hopefully you won't reach the depths that we have with our d, but here are things that I believe have been helpful:

We make her pay for food she wastes. It hasn't stopped her, but it hurts her financially to continue the cycle.

We treat her as lovingly as possible, say yes to things as often as possible, and when she's willing to talk about her illness, her struggles, or anything else, we listen as nonjudgementally and in as accepting a manner as possible even if it's stuff we don't like hearing about.

We skipped a family vacation this summer because my d felt that the vacation might mess up her meal plan. But we still try and do things together as a family: day trips, movies, puzzles, walks, though we don't do this enough but it's mostly because my d doesn't want to. 

We also try to keep anger and blame at a bare minimum, which is difficult when we're woken up in the middle of the night by her b/p sessions. So much of her disease looks like a choice that it's very hard not to get frustrated, angry and hopeless. We try to be understanding and not to yell at her or blame her for her behavior. 

We are completely honest in family sessions with her therapist. My husband is very good at stating the facts in a matter-of-fact manner so I leave that up to him. So if our d is less-than-completely-honest with her therapist, the therapist hears the truth from us on a regular basis and our d is hearing it at the same time, too.

Having a life outside of her eating disorder. A limited time away from home for a job and commuter college is helping her grow up some. This is tricky, though, and we haven't found the right balance yet. The downside of these extracurriculars are that it gives her a chance to compare her life to the lives of well people her age, and if she overdoes it with too many classes or a stressful test, or is away from home and a decent meal for too long. And a job means she has $$ for binge foods, drugs and booze. But we feel the pros outweigh the cons and we are learning as we move forward. We overdid it this semester but we are better prepared for the spring if she ends up in college at all. Keeping her at home all the time would be horrible for her as boredom is a reason to engage in behaviors.

Taking care of ourselves has helped, too, because we're in a better position to help our d.

What was not helpful for her recovery was locking food away, and we have done that on and off for almost 2 years! My daughter told us that it made her feel like a criminal. In fact, my opinion is that it may have prolonged the illness by not allowing her the ability to try and self-regulate. Instead, we have brought the food in and now we make her pay for food she wastes. I keep a very tiny amount of breakfast cereal in the trunk of the car at the request of my husband so he can eat in the morning in case she's wasted all of it at night. Her therapist has suggested not keeping any binge-able foods in the house (cereal, bread, crackers, sugar, etc.) and we are wrking on doing that, but our daughter can just spend her own pay on this stuff. Also, my vegan daughter will binge on meat and dairy that I have in the fridge. It's so clear her body is SCREAMING for those nutrients!

I hope I have helped. Hang in there. XO

Francie

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