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

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peregrine_USA
For newcomers, I am one of the old-timers advocating for a family member and all of you to get early and effective treatment.  My family member unfortunately did not (27 years ago) and her ED went underground once she received treatment and then continued seeing a therapist.  She relapsed a bit more than ten years ago and we have tried everything possible to help her get into recovery but haven't had any luck although there have been periods of better health than others.  Right now and for the past several months things are bad.
I am posting because something happened yesterday that must not happen to any of your younger (or older, for that matter) folks and if my post here can help prevent that, then it was worth it.
My family member has been coping with her anxiety, depression (big time), mood disorder and anorexia/bulimia in a variety of ways.  This past year has been no exception.  She is older than 40.
I learned yesterday from her that she has been B/P for several weeks now and this past weekend turned up the activity to the point that yesterday morning she got up, fell over, had not urinated for two days, and was experiencing terrible abdominal cramping pain.  Her boyfriend called 911, she was rushed by ambulance to the hospital, and admitted to the ER immediately and hooked up to an IV.
What happened next is why I am writing.
The doc, who had seen her before, figured a simple IV hook up was what was needed but did have blood drawn.  By the time I got to the hospital, she was off the IV since her ED brain was proclaiming she was just fine and could leave.  Doc accepted that.
I asked the doc what her electrolyte readings were and he said he hadn't seen them.  I emphasized that she had a serious eating disorder of bulimia and possibly was in danger.  He went to check and learned that the test stopped at the CBC at someone's (?) request so electrolyte check hadn't been made.  He immediately ordered that and returned to say we'd learn in about a half hour and no discharge in the cards yet.  [THank God].  Half hour later he came in to say he was keeping her and admitting her to the hospital for observation and electrolyte replenishment because her potassium was 2.5 (anything below that is heart attack territory), her sodium 125 (we all know that is low-ish) and her calcium very low (he didn't give me the number.  They immediately hooked her back to an IV, gave her two vials of potassium in liquid form to drink (she rejected the IV having experience potassium that way and learned that it burns terribly), and ordered admission to the hospital.  She is still there.
My family member has experienced several things that should not have happened due to the ignorance and lack of training of medical/therapeutic professionals.  I've blogged on those before.
But this one was downright frightening and shocking because I knew that the moment she left she would go back to what she had been doing and progress to even lower numbers.
This has been a hell of a Spring for my family member and us.  Multiple hospitalizations among the things that have happened.
I do hope the recently released 9 Truths document plus the recent radio programs (NPR among them on anorexia/eating disorders) plus more balanced articles getting away from just the body image thing plus any work that any of us can do will lead to earlier and more effective treatment for the children/family members of families just entering the fray (and those already in it).

Peregrine_USA
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WeNWinning
Peregrine - My heart goes out to you and your dear daughter.  I know how hard and long you've battled for her and it gets harder as the years go by.  It also gets harder when they are brought for proper care and don't get it due to the ignorance of the health care providers.  The entrenchment and difficulty to gain remission gets so much harder each year that someone is not fully treated with what we  know now is best care - full nourishment, full time and getting to WR early and maintained.  As well as to learn the tools to cope with stressors and how to circumvent relapses.

I am praying for  your D that she gets the proper help now and with your and the boyfriend's support, she will make some forward progress again.
Sending you strength and warm wishes
WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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peregrine_USA
Thank you WenWinning.
As an update, as usual they took care of her electrolytes and bounced her back out.  The hospital says they're not an ED facility.  So many times this has happened.  I am hoping since she is under court order that her mental health provider will do something.  They know about the situation.
Peregrine_USA
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IrishUp
Peregrine, please have ALL THE HUGS.  How awful and scary this must have been. I am speechless.

And thank you from the bottom of my heart for taking the time to write. I hope this will help avoid a future catastrophe.
IrishUp
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WeNWinning
Thanks for the update and so good to hear they took care of her electrolytes.  Sending warmest wishes that her mental health provider will do something.  Your D needs proper care, ED facility or not.
Will keep your D and you in my prayers
WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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AnnieK_USA
My love and support to you, Peregrine, for what you and your family member have suffered and continue to suffer. May she get through this crisis and get the help she needs for full recovery. 

Your message about getting early and effective treatment is SO important, and I hope many others will read and do whatever they can to get it for their loved ones.
Daughter age 28, restrictive anorexia (RAN) age 11-18, then alternating RAN with binge eating disorder and bulimia with laxatives, is in remission from EDs for 3 years after finally finding effective individual therapy. Treatment continues for comorbid disorders of anxiety, ADD and depression. "Perseverance, secret of all triumphs." Victor Hugo
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OneToughMomma
Peregrine,

Sending you the warmest support.

Take care of yourself.

xoOTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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NELLY_UK
I fear this story will be me.

We have had bulimia in the house for four years. It is not going anywhere and D is 16. My only hope is that she will have an epiphany and it will magicly go.
There is no treatment available for this as she is 'healthy' ish weight. We cannot magic up any help that works. Maybe stronger drugs?
Until her bloods show a disaster, nothing will be done.
It is a nice thought to get her help, but none of the available help, which amounts to talking, helps, so actually this is it. Wait and see therapy!
Reading about you, Peregrine scares me and I dont know how you have carried on this long. You just do, I guess.
My heart goes out to you.
I hope you have hope still.
xxx
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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sk8r31
Sending warm support and many virtual hugs, as you weather this latest storm.

Take the best possible care of yourself as well,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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biomom
I'm so sorry to hear this, peregrine.

My D has also had to be admitted to the ER/hospital for potassium replenishment (hers was 2.3 at one point last summer - scary!!)

For what it's worth if anyone is in this situation, to prevent IV potassium from burning, they can run it much slower (I think they run saline at the same time to dilute it? but not sure.) This is an easy thing that doctors should be able to do. I only know because my D had a great doctor who suggested it when the IV was hurting her.

Not medical advice, but just from experience: Also, for anyone's S/D who has severe purging behavior, my D has been on potassium supplements for years now since she purges multiple times a day, every day. These are pills that are taken daily, available by prescription. The brand name in the US is Klor-Con or K-Dur but there is a generic. They are extended release so it is best if he/she takes them before bed or at another time where they are guaranteed not to purge for many hours. It's worth asking your doctor about if your S/D is purging every day. Obviously the best thing would be to stop the purging but for those of us with adult ED sufferers who have severe and entrenched forms of the disorder, it's probably lifesaving. Potassium replenishment in the hospital is great but you often need to supplement at home to maintain that level if he/she continues to purge.

b/p subtype AN/Bulimia is the worst.
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Colleen
peregrine (and biomom),

I'm so so sorry that this is happening.  Thank you for thinking of our community here, with many new parents.  It's so hard to treat ED even in the beginning, that many parents want to back off and let their children take the lead (and there are many professionals who would back up this approach).  Thank you for encouraging them to treat early and aggressively.  There are no guarantees with ED, but it seems to lead to the best outcome.

That said, all we can do is the best we know right now.  And that goes for you, for sure, peregrine.  Things were a lot different 27 years ago.  You did the best you could given what we knew at that time.  I dream of a future where we know a lot more and have better treatments that are easier on sufferer and family alike.

All the love, peregrine.
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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NELLY_UK
So B/P sub type bulimia
Does anyone recover from that? Or is recovery partial? In which case how partial is the best case so far?
How many people with ednos really have this instead?
What would the desired effective treatment for this be?
Empowering the family would be my guess. Meal plan and supervision. The latter are impossible with an older teen who refuses.
Peregrine, you have my utmost respect for sharing this. X
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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SeminarLady
I am so very sorry for all the sadness and anguish that you have had to endure over the years and now.

Sending you strength and hugs.

I continue to prayer for your daughter and for you.

May she find her Miracle and may you have Peace.

Hugs!
Cathy V.
Southern California
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GiveMeStrength_US
so, so scary - sorry you are going through this.  using your experience and knowledge to help (warn) others is invaluable.
Mom to D 21 in November, behaviors started at 15, hospitalized at 16, IP at 17, FBT at almost 18. Finished second year in college; now abroad in treatment program to deal with co-morbids.
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peregrine_USA
Thank you so much to everyone who offered their prayers and hugs.  Thank you to biomom for the suggestion of the potassium supplements.  I will mention this to her.  I know one can also get tablets over the counter and that might be a good idea as a first step.  When I spent time with her last week after she was released, she did look for things that had potassium as an added supplement.  So, she is keeping that in mind.

in response to Nelly_UK's request, here's my personal experience and as all of us say re our children, this is one person's story and there's no guarantee that it'll work but there are bits and pieces in this that might help your child, especially adult child.
I developed anorexia subtype bulimia when I was the same age as my daughter (15).  In those days - the 1960's - hardly anything was known about it and I sure wasn't telling anyone because I was embarrassed that I was doing the B/P and losing so much weight.
 I finally threw off the anorexia part in my twenties (I can still remember layering clothes when I went to college mixers but knew I was really too thin but could not stop the thoughts and what I was doing at that time given the stress and being quiet about it all.  I was hospitalized once but the docs had no idea what to do about it.  My parents only knew many, many years later when I told them). So maybe I grew out of it?  Maybe I gained some weight and became aware (opposite of anosognosia)?  I don't know.  I do know I wanted children and had to gain weight to do that as well as eat healthily and I had a husband to feed who needed (as we all do) balanced meals that I'd also learned about in college through a course on nutrition.
That said, I sort of stumbled into recovery and I think it was a combination of several things including:
volunteering/activism - this got me out of my head and brought me satisfaction that I was making a difference and actually had the "smarts" to do that - confidence building....
finding the sport of long distance running (yes, I can imagine your first reaction but I was fortunate to have been a nursing student and for some unknown reason it took my love of running to understand that if I wanted to keep at it, I had to eat! and I had to conquer the fear of eating as I saw my weight slowly increase on the scale - I gained ten pounds that first year.)
eating the "right way" - i.e. actually you can read more thoroughly about that here on my blog:  http://www.desertdwellergettingon.blogspot.com/2010/12/nutrition-brain-and-neurotransmitters.html
I also know that I was truly sick and tired of being sick and tired.  Amazingly, my daughter said exactly this the other day.  My response was simply "That's the first step in a journey that can lead to recovery."
So, in closing, I will repeat that early treatment is SO VERY IMPORTANT.  Don't delay.  I lived through more than 15 years of this horrid thing.  It's not worth it.  I think back on all I might have been/done but at the same time I have done so many wonderful things and taken a different path than I might have.  And that's ok.
Watching my daughter suffer through all of this, I cannot begin to tell you how much courage that has taken.  Her will to live is astonishing.  I write my blog and do other things (like visit here and post to FEAST) because I am determined that if I can get even one person into treatment as early as possible, maybe I can prevent that person from going on to become entrenched.  




Peregrine_USA
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Charbonie
Peregrine, thank you for writing this. It is always such a relief to hear of one more woman (or man) who got through this illness as you did, even without helpful treatment. It makes me believe that real recovery is possible for our child and many others who have early, evidence-based FBT treatment, and whom we continue to support on a daily basis. Sadly there are so many who do not have any support, surely ours, with all of the tools and support we are providing them, will be victorious over this illness, and sooner rather than later.

Best wishes,
Charbonie
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18 yr old d Dx Mar 25/14. WR June 2014. FBT/EFFT, Individual Therapy. In Phase III, eating intuitively, letting her plan ahead on her own re her nutritional needs for the day and how they fit into her schedule. Teaching her how to cook more for herself. Still watchful. Thankful every single day.

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NELLY_UK
Thank you Peregrine. It is good to hear how you went through your own recovery via the life route.
Maturity, insight, living seems to have won over your ed.
My d is sick of being sick but stil feels she has to do it when she eats too much( and she does )
Her job may well save her.
You have given me some hope.
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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heartbrokenmom
Peregrine, thank you for sharing your personal story.  Very good insight for people here who haven't had much experience with the ER protocol.  We have had multiple ER visits, with subsequent hospital admissions, for low potassium.  And more than once they wouldn't have checked her potassium levels without my insistence.

Wondering if you've ever been told about the dangers of iv fluids upon admission?  I attended a lecture from a physician specializing in ED that said we need to be careful when too many iv fluids are rushed into the compromised body of someone with ED.  He said that when levels are already too low, the addition of fluids too quickly can actually flush out the little bit of potassium left.  I've haven't heard that theory since then, but I have asked doctors to administer the fluids slowly over a longer period of time.  Just a food for though, I guess.

Big hugs to you.  You have been at this a long long time.  Your daughter is really blessed to have you behind her.


Heartbroken Mom
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NellyMac_UK
Peregrine, my thoughts are with you and your daughter, you have both been fighting for so long, you must be utterly exhausted and words are not enough.

Sending love and strength to you.  Take it a minute, an hour, a day at a time.  You are truly amazing for keeping going through this.  Wishing you strength to get through your current storm and hoping you get a restful period soon xxxx
Diagnosed RAN October 2013, w/r but struggling with depression and anxiety.
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peregrine_USA
Heartbrokenmom, thank you for the tip about the electrolyte replacement.  Interestingly, once the doctor realized that my D had low K as well as Na, he put her on saline plus potassium.  I have made a note and will also remind my D, although I am not sure she'll really be in a state to think of this if/when she returns to the ER.
Peregrine_USA
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peregrine_USA
Here we are again.  My heart breaks for my daughter.  She called for help today to get her to the ER.  She does not see a way out.  Please hold her in your thoughts and prayers.
Peregrine_USA
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peregrine_USA
PS.  This is Arizona.  The docs discovered her potassium was 2.1!!!!!!!!!  They went into high gear but as usual, because ED is not covered by the State of Arizona they are inclined to release her in the morning.  Boggles my mind.  I am trying to get the wheels in motion to declare her a danger to self.  
Peregrine_USA
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Colleen
I'm boggled too, peregrine.  What does it take???
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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WeNWinning
So so sorry to hear this Peregrine and I am holding your D in my prayers - as well as you - that you can get her declared a danger to herself. Unbelievable that State o Arizona does not cover ED.
WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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Calm_USA
Praying for you and your d
Mom of a 19 yr old. RAN diagnosed 1/2014. Residential, PHP, IOP. W/R since late summer 2014. Now in remission and thriving in her second year at university. My Faith remains.
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