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

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sunny6
We need some suggestions.  After 1 year of wr, our child has started to go backwards quickly.  While they were never able to eat on their own, they had made progress. However, in the last three weeks we have watched them increase purging behaviors and have seen about 3 kg of weight loss.  The purging is occurring twice a day now.  We have tried to remove them from school and outside activities and it results in hours of them yelling at us.  They claim the more we take them out of things the harder this is for them to control their emotions and behaviors.  Our therapist has said if we can't control it, then they need residential help.  We really need to get a doctor to remove them from school.  While it would be hard, I think hearing it from a doctor may reduce the anger towards us.  Here is the problem, their bmi is still quite good.  But the weight loss is starting to progress and we are concerned about electrolytes with the purging.  Last time we couldn't get anyone to do anything until they had lost 15 kg and stopped perfusing blood because the lab work always looked normal and they weren't below 18 on the bmi.  While they don't meet the AED guidelines for admission, how do we get them help beyond once a week therapy?  How do we get a doctor to treat this seriously?  There is also the concern of si and sh as this goes on as it had before.  It feels as though we are at the beginning again and even after all this time, we don't know what to do.  Facilities won't take them unless they are voluntarily wanting to come or are instable.  Any suggestions on how to get some help in the US would be appreciated.  
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tina72
Purging is a serious issue and you are right to be concerned. This needs to stop asap.
To be honest, most of the work you need to do to stop it. You need to make purging impossible (by 1:1 supervision, no access to the bathroom etc.)
Do you know where/how she purges? Do you have ideas how to stop it (lock bathroom door for no access, hang out bathroom door for 1:1 supervision there, make her sing in the bathroom or something like that)?
Do you know if she purges in school? Then you will need to take her out until that stops.

It is normal that she yells and blames you for making her behaviour worse but that is not true. It is ED that makes her behaviour worse and that needs to stop - whatever is needed to stop that. It is ED that yells at you because you are fighting him. Remember when you see ED you are doing something right.

What would happen if you simply leave her at home without a doctors paper? I do not know the laws there...
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
It does sound like things are really heading backwards fast. I note that you are still seeing a therapist but who if anyone has been doing their medical monitoring? Is it an ED clinician, my reading of your post suggests may be no one?

In terms of safety the first thing is to make sure they are getting regular assessment of their vitals, blood work and ECG. 
Anyone who is familiar with ED's would know that this sort of escalation needs strong support - loss of 1kg per week is high risk and likely to indicate the need for a higher level of care if it can't be changed. 

In terms of looking for medical support I would look for someone who fits the bill of familiarity with eating disorders, it may be worth looking further afield. Where are you based?

I agree with Tina that their yelling at you for withdrawing them from school and standing firm against their ED is all ED. My D used to throw that one at me all the time. ED is using that line because changing things up makes it harder for ED to continue the old behaviours. After all the only reason you need to take over is because they can't control things themselves.
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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sunny6
We continue to look for a doctor that understands this illness, but haven't found one close by yet.  They do have an appointment with someone in a few days.  The drains and toilets have not worked in this house in two years and outside of a few instances, it had been well controlled by them.  However, new tricks have been figured out.  We are working to figure out the new tricks as it started as pitching food, but we have seen the purging particularly since we started pushing intake and taking them out of activities.  We are watching closely and are prepared to go to the ER, but we worry about the fact that most will run the ECG and bloodwork and everything will appear normal and they send us home.  That just feeds the ED to day that they are perfectly fine and we are just crazy and overreacting.  
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tina72
In the end no doctor or psychologist will take the work of supervision off your shoulders.
Make sure a GP checks blood soon. There might be already a dangerous deficiency caused by the purging.
Take her to the dentist to check the teeth. The purging might go on for longer than you expect and already have damaged the teeth.

So it is important to stop the purging asap or it will get worse and they need to go IP then. There they will do nothing else but 24/7 1:1 supervision. It is the only way to stop it, they cannot stop it themselves.

When does the purging happen? Do you have ideas how to stop this or can we help with brainstorming?
Some do purge in the nights (by vomitting or by secret exercise) so sleeping with the kids for some time x helped.
Some do purge after meals (they have 100 excuses why they need to go to the bathroom NOW). This can be stopped by no bathroom access up to 1,5-2 hours after meals (lock the door in this time if needed and do not forget the kitchen sink).
Some do purge through the window into the garden. In that case it helped to lock the windows so they cannot be opened.
Some purge into small boxes and bags in their rooms. Then it helps to take all boxes and bags out of their rooms.
Be more creative than ED is. Purging is very dangerous and very hard to stop. The earlier you can stop it the better. Start today.
Keep feeding. There is light at the end of the tunnel.
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mjkz
One thing I would suggest is working on your own distress tolerance.  It's so hard when your own child yells at you but you do have a say in what you put up with.  What you allow will continue so nip that in the bud.  This is your child and you are the parent so you get to choose what behaviors you will tolerate.  When my daughter started in like that, I would tell her twice to stop. The first time I would say I wasn't having this conversation with her.  If she continued, I'd leave the room and if she followed and continued, I'd put headphones on.  It only took a few times before she got the idea that I really wasn't having the conversation with her.

Purging is one of the hardest things to stop I think (exercise is a close second).  Nothing in your house is controlled by your child so 24/7 observation, no doors on the bathrooms he/she uses.  If throwing away food is an issue, then make sure she eats in nothing with pockets, no napkins, etc. and if you find food uneaten, then make sure you make up those calories.  It sounds like from your past posts that you've done this before and now after a year you need to whip out those skills again and use them.

I myself and my daughter just went through a serious relapse after 4 years of solid recovery.  It was lightening fast and nothing I did could reverse it. She ended up back inpatient for months and was sent home on a feeding tube, suicidal, etc. so my heart and prayers are with you during this time.  I suffer depression and ended up having to go inpatient myself for a tune up (we both suffered a huge loss which sparked the relapse, etc.).  She is back to where she started weight wise and eating but still so depressed.  You might not be able to stop this and she might need to be residential for awhile and that's okay.  All that really matters is stopping this downward slide ASAP.  Hope things are at least stabilizing.
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sk8r31
Sending warm support to you, as you try to find the support that you & your child need.  Have you got a copy of the AED (Academy of Eating Disorders) Medical Care Standards Guide?  It can be downloaded or shared with any medical provider who will be doing testing.  As bloodwork can appear normal until things are very dire, a necessary check that should be done regularly is orthostatic blood pressure.  In other words, taking blood pressure sitting and standing with about 2 min in between.  If there is a change of >20 mm/Hg between the two readings, then that is cause for concern.

My d was admitted to hospital for medical stabilization for a week, even though she was not below what was considered a 'healthy' weight for her height, and with normal bloodwork.  However,  she had bradycardia (low pulse rate), and orthostatic bp was concerning.  

Hope that you can find a medical provider to support you & your child.  We live in a small town, where there are few up-to-date providers.  However, we had a doc who was willing to take everything we gave her and work together with us to care for our daughter.  If you can find a provider who is willing to learn, even if they are not trained, it can be a workable solution.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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