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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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melanie32269
Hello everybody. I'm so happy to have found this site. We sometimes feel like we are going through this all alone.

Long story short, my daughter is 14 and has bulimia, and we go to the best psychiatrist in the area and my daughter has the best therapist around also. However, they admit that they are not experts with eating disorders and have referred us to an inpatient treatment facility in Houston. We have an appoint to be evaluated Jan. 3.

My question is this....how do you know when to restrict her fluids? We are watching her when she eats and making her wait 1 hour after she eats before she goes to the bathroom. However, she is drinking huge amounts of water, soda, coffee in order to fill up her stomach or sneak to purge. Yesterday she drank a 12 pack that I just bought, two pots of coffee, and literally every hour I saw her with a large cup of water in her hands.

How do I know if she is doing this because she is dehydrated or just trying to fill her stomach? Do I limit the amount she drinks?

Thanks...you all are a God send!

Melanie

Melanie
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Colleen
Hi Melanie,

I'm not a doctor, but that sounds like a massive amount of fluid to me!  Not anywhere near dehydration!!

Many BN sufferers drink lots of fluid to make purging easier.  Do you think she is purging outside the one-hour window after meals?

Are you in charge of your d's nutrition?  Are you planning and plating her meals for her?  Does she get well-balanced meals and snacks at regular intervals?  Is she in charge of her meal portions and choices?

Is your d also underweight?  Could she be hungry and trying to fill up with fluids instead (especially zero or low-cal fluids)?  (Especially possible if she is in charge of her food intake.)

I can understand why even a good psych and therapist would recommend someone else when they are trying to treat a powerful disorder like ED and are inexperienced/uneducated.  I appreciate them both recognizing that they aren't qualified to treat your d.  However, is there a better reason they are recommending inpatient/residential?  Is she medically unstable?  It's possible to treat ED at home with outpatient support (medical and therapeutic) with professionals who have FBT training.  Maybe your professionals aren't aware of the new treatments for ED?


Sorry for the millions of questions.  I just wanted to get a clearer picture of what's happening outside the fluid intake.  Welcome to ATDT!
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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IrishUp
Hi Melanie;

I'm sorry you've had to find us. You are not alone here, and I hope we can help. It sounds like you could use some better information on what you are facing with Bulima, and what you can effectively do to protect your dear d. You are off to a good start with the bathroom supervision.

I have a lot of the same questions as Colleen, but for the moment, it sounds as if you are wondering what more you can do at home. Even if your D does medically need to be in a hospital, once she is home, she will need as much support and structure as you can give her, to get over this beastly disease.

Here are some quick links to resources for BN:

http://www.aroundthedinnertable.org/post/show_single_post?pid=1266906046&postcount=5
http://www.aroundthedinnertable.org/post/show_single_post?pid=1271397264&postcount=33

Purging behaviors can be really tough. Our d started out with predominantly restricting and exercise purging, but did develop other purging behaviors maybe 7-8mo after her diagnosis.

The key to treatment for any ED, is to support and restore normalized eating. Which means regulating the time and frequency of meals, making sure each meal is nutritionally balanced and is completely consumed, and limiting purging as well as excess eating beyond what she needs.

The biggest phsyiologic danger for people who vomit, is that it causes electrolyte imbalances. These can quite suddenly become critical, and this kind of purging elevates the risk of fainting, seizures, and severe consequences such as sudden cardiac arrest and death. Water loading, because it affects salt levels - another important electrolyte (hyponatremia) - REALLY needs to be discouraged. Many bulimics do it because it makes purging easier, as well as for the sensation of fullness.

Similarly, excess caffeine is another common ED strategy; it is a form of purging due to it's metabolic effects. However, the chemical aggravates many ED symptoms - anxiety, cognitive distortions (weird ED ideas), and gut problems. Because of it's diuretic and stimulant effects, it's also problematic in someone who is purging, as it can cause or aggravate existing (and maybe still latent) cardiac arrythmias. It's effects on the gut include making the stomach and upper GI tract more susceptible to ulceration, which is another increased risk from vomiting. Two pots of coffee crosses the boundary into excessive caffeine intake, even for a full grown adult.

Purging has both a psychological and physical component. The "urge to purge" is overwhelming; it's a compulsion that your d can't really stop on her own. The urge builds, and is experienced as a sense of overwhelming anxiety or fear or distress or panic (in any combination) by the person. Once the purging has happens, there is immediate relief. So in this way, the behavior is a bit like any other addiction. Breaking the addiction means stopping the behavior. But the act of purging messes up our normal hunger and satiety functions - especially when it's a daily (or many times a day) event.

There is a growing body of evidence that high-fructose corn syrup, especially in a food like soda that has no other major nutritional component, aggravates both the physical and psychological components to purging - especially if binge behaviors are associated. It seems like binge is likely a component for your d, as again, 12 cans of soda is fairly excessive.

Most ED programs nix sodas, caffeine and artificial sweeteners (another really problematic food for people with ED). In your shoes, I would institute those policies ASAP. If you live in a hot climate, more water might be needed, but overall, 8 servings of fluid every day should work. Make some of them milk (including almond or soy if there is lactose intolerance), smoothies, or shakes.

Aim for 3 square meals and 2-3 snacks at regular intervals - generally it's a bad idea to go longer than 3-4hrs without food during the day for someone with ED. A growing body of research suggests that a balance of 30% of calories from lipids (fats), 30% from protein, and 40% from carbohydrates is beneficial to people with ED. Aim for this balance at each meal/snack. Lipids help heal organ damage from ED and promote brain health. They also promote healthy feelings of satiety and inhibit any binge urges, and help regulate blood sugar. 

If there is purging, replace lost calories with a smoothie, or even a supplement drink like Ensure. Purging would also include ingestion of caffeine or any other stimulants (those horrible OTC engery drinks).

Plan fun distractions for after meals and situations when she is acting agitated. The more you can help her think of OTHER things to do, the more it will help her *unlearn* ED behaviors.

Lots of patience, and love. You didn't cause this, and she didn't choose this, but you can help get her through this.

(More reading: http://apt.rcpsych.org/content/11/6/432.full

http://www.aroundthedinnertable.org/post?id=3564045
IrishUp
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hopefulmama
Melanie-I am so sorry for what you are going through. I agree with the advice you have received above. However, if you are looking at inpatient send me an email and maybe I can help as I am also in TX. When we made the decision my d had to go inpatient last year I did TONS of research to find evidence based care that includes families. We ended up going out of state because I found resources in TX to be woefully inadequate. If that is the road you end up going down it can be so detrimental when the care is bad. We went through that too. My experience was that just because professional recommended the facility, didn't make it good.

I know it feels overwhelming, but you can do this!
Enjoying my 23 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
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melanie32269
Colleen,

Thank you so much for your reply.

I do think that she is purging after the one hour. We've implemented the "no shower" rule after meals, but we had a surprise yesterday. Found bags that she had been throwing up in in her room. Her trash can was so full that we couldn't lift it. Sorry for being so gross.

We have not started the refeeding process yet. We are trying to work with her for her meals, but this isn't working well at all.  We are trying to get her into a facility and still learning about everything.

She is not medically unstable. She is underweigth, but again, she is right on the edge. They say that her test results are right on the borderline. We are going to Texas Children's hospital on Friday and will try Dallas after that. We've been warned that Texas Children's will probably not take her since her blood work is not that off. It is so frustrating!!

If we can't get her admitted, we will try to find a therapist with experience dealing with this and FBT. Outpatient is also an option, but we live about 2 hours from the nearest facility.

Thank you for all your information. I have so much to learn.

Melanie
Melanie
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melanie32269
Dear Irishup,

Thank you! We are still learning about the refeeding process, and your post was so informative. Is there a book that you recommend that explains the balance of lipids, protein and carbs at meals? Like I said, we are so new to this and still feel like there is so much to learn. I am feeling overwhelmed especially since she is fighting us every step of the way.

One more questions...she is so against the hospital. How successful can it be when she is saying that she does not want help? She is saying that she will say what they want her to say, gain the weight, then as soon as she is out, she will lose it all again.

Thanks again.

Melanie
Melanie
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melanie32269
Dear Hopefulmama,

I am so frustrated with this process in Texas. I will email you so that I can explain the situation. Thank you for being there.

Melanie
Melanie
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Foodsupport_AUS
Melanie, you are at the bottom of a very steep learning curve at the moment. I know lots of information keeps on coming at you. 

You asked about a book for trying to work out proportions of proteins, carbs and fats. Generally speaking it would be better using foods that you normally would use at home, feeding her your normal meals. Meal plans can be a rod for your own back down the track as many ED sufferers become dependent. Given your D's binging, perhaps look at the Kartini meal plan in the Hall of Fame (under other methods of refeeding). 

I would encourage you to consider starting refeeding straight away, with a view to gradually increasing her intake every few days. Allowing her to get sicker does not make sense, just like allowing her to continue purging. They all do damage. I know that it is really hard to do this without support at home.

You ask how can the hospital be successful? It will not cure you child. Treatment centres only ever at best start off recovery rather than complete it. Gaining the weight is the first step of recovery. Maintaining that weight and the nutrition that goes with it second step. Dealing with other conditions such as anxiety, depression, self harming etc.. are managed at the same time. Most of this is going to need to happen at home, and of course is why you may as well get started now. My understanding is that hospitals in the US tend to stabilise only those that are significantly medically compromised, and then patients are rapidly moved to treatment centres/home depending on multiple factors. If weight gain is impossible at home, then hospitalisation in some form can be very helpful to achieve this, but still it needs to be maintained.

When your D talks about losing weight on discharge, remember it is her ED talking. Ideally try not to engage this part of her. ED will think of every excuse, reason known to man, why your treatment plan is wrong, dangerous, a waste of time. Her ED will send her on an endless path to self destruction. Do not engage with it.
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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Colleen
Hey Melanie, the ONE book you need is Help Your Teenager Beat an Eating Disorder by Lock and LeGrange.

Normalizing nutrition is the first step in recovery whether the illness presents as AN or BN or BED or EDNOS (soon to be FEDNEC).  That means regular nutrition, kept in, and not compensated for in other ways (exercise, laxative abuse).

She doesn't need to be recovery minded at this time--in fact, it would be unlikely for her to be capable of that while she is actively ill.  She is under the influence of a powerful compulsion--her brain is not in a healthy enough state to be functional in that regard.  She needs YOU to be focused on recovery and moving her toward it.  Yes, against her will.  When her behaviors have been interrupted long enough, and her brain has been nourished long enough for some level of healing, she will be able to take on the responsibility of recovery.   But don't expect that right now--in fact, expect the opposite.

You can use your d's avoidance of the hospital to your advantage.  If she can eat at home without purging she can continue to stay home.  Otherwise, if the hospital can actually stop the purging and increase her weight, then that's a good place for recovery to start.  Like Foodsupport said, this is only the first step in recovery, and it will take a lot of work on your part to keep her weight and nutrition up and her behaviors in check.  But time and firm boundaries will heal her brain--just like a cast on a broken leg.

Don't let ED boss you around or decide how treatment is going to go.
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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melanie32269
Thank you everybody. Can you tell how new we are to this? I think that I'm still in the mode of "just let me find the best facility and that will fix her".

To be completely honest with you all, I'm so scared. We have tiptoed around her for the past year. She has Boderline personality disorder and we are trying to do everything we can to keep her from cutting and attempting suicide again. But we have to try something different.

I'm so worried that I can't be as strong as some of these other parents that I'm reading about in their posts. I'm her mom and I should be able to face anything for her....including if it is coming from her. But I'm scared.

Melanie
Melanie
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Red
It's OK to be scared. We all were/are. A great saying I learned here is "Fake it 'til you make it.", which got me through many a tough moment. You're at the beginning of a very sharp learning curve so read all you can from FEAST and from the Hall of Fame here. There's always someone here to support you.
The future is not set; there is no fate but that which we make for ourselves.

"Not my daughter, you bitch." Mrs. Weasley
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Foodsupport_AUS
We all feel overwhelmed at times, even when we have been at this for sometime. That being said, in general things do get better over time. 

Your D's diagnosis of borderline personality disorder does complicate things. Many practitioners are reluctant to diagnose this in young patients, as their personality is still developing and many of the traits overlap with other conditions including eating disorders, in particular bulimia. You may like to read the NICE guidelines from the UK for diagnosis and management. https://www.rcpsych.ac.uk/files/samplechapter/BorderlinePDSC.pdf
 I hope the assessment at the end of the week goes well, and you start to feel that you have more support on the ground. 
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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momon
Melanie,  

I want to specially send you my support and caring as I have shared the fear of another worrisome possible mental health issue on top of the ED.  My 10 yo d when she was very brain affected by the disorder and starvation really seemed to me to have borderline, which scared me badly as my sister has that and I have dealt with it for so many years.  One night she also seemed psychotic, which is also in the family history. Now that my d is recovering good brain function and the ed is in retreat, she does not at all seem to have borderline or even any other very scary mental illness (OK, ed is scary but beyond that!!).  I am no expert at all but please know that based on my experience and reading on ATDt, It seems to me that quite qualified mental health professionals who aren't experienced with ed don't always understand how badly ed and starvation impact mental health-- our child psychiatrist didn't and maybe still doesn't understand how much of my d's issues were caused or seriously exacerbated by starvation and ed.  

You may well find that when you get her nutrition and weight corrected for a good long stretch of time, many of the issues will be greatly diminished. There is every reason to hope for this. And as food support said, kids are also in flux and still brain developing.  Sending you strength and good wishes and hope. Keep on feeding and dealing with the purging and keep her safe now, and things will get better. You can do this! Get all the support you can, you deserve that too.
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perdido
Welcome to the forum, sorry you had to find us.
We have found food in drawers and the occasional purge. It's okay, you will learn what you need to help your daughter.
First of all, you can't listen to your d because she is in the grips of ED. 
Does she have a formal diagnosis yet. You say bulimia but you also say she is underweight.
My d was purging every meal before diagnosis and she had to go into the hospital to have her vitals stabilize.
My d was very ill when diagnosed and we as parents had to take what she wanted out of the equation to save her. Her ED was not happy at all.
It will get worse before it gets better, but when it's hard remember you have us here to help and ask lots of questions.
Hugs and strength


Slow and steady
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