Anorexia

[abcinnc]

Does anyone have experience with an anorexia diagnosis of teenager? My dd had OCD which she overcame through therapy. Then, she got into healthy eating and exercise and this has changed into anorexia. She's lost 50 pounds total in 3 years with the last 12-15 in 6 months and is below the lowest recommended BMI for her height. I think the anorexia started around 2 years ago, but has gotten worse. We are seeing a counselor and dietician. She doesn't seem to be improving, and now we are talking about inpatient care at a treatment facility. We are sad and scared. What should we do? Can you recommend a treatment facility? What experience have you had? Did your insurance pay? I called a facility today, and it is $1400 per day with an out of network copay. Our out of network deductible is $22,000.

You can post or PM me.

I may delete this later, so please don't copy my post.

Thank you.

[Starr]

:grouphug:  :grouphug:  :grouphug:

[Susan C.]

:grouphug:  Do you have any reputable in network options?  If not, its more important that you get her better. Worry about paying later, just make sure where you pick comes highly recommended.

[Tsuga]

:hugs:

[Liz CA]

Remuda Ranch comes highly recommended, however, I cannot speak from first hand experience.

 

https://www.remudaranch.com/

 

Don't know what kind of insurance arrangements they can make but it may be worth a phone call or thorough check of their website.

 

:grouphug:

[Jasperstone]

Oh no, such a horrible condition to have! I went through it at 17- 23 yrs. :'(

 

((((Hugs)))))

 

I don't live in the USA , so haven't any advice, sorry.

[Pawz4me]

I flirted with anorexia, but I was in my mid to late-20's, which probably made it a lot different than for a teen.  The DD of a friend had to have inpatient treatment for anorexia.  That was about 15-20 years ago.  I don't remember the name of the facility, but it was in Arizona and as far as I know insurance paid for the vast majority of it.  My friend had lots of worries during that time, but she never mentioned the cost of her DD's treatment being one of them.  The DD is doing great now.  She's perfectly healthy and the mother of two. :)

 

Is it possible you could get your out of network co-pay waived?  It's not like there are inpatient treatment facilities for anorexia everywhere, so I imagine for most people it's something that's impossible to receive care for in network.

 

:grouphug: :grouphug:

[FaithManor]

I think you could try to appeal the deductible. Many states do not even have a treatment center for this disease so "in network" is kind of meaningless. You can also call your state's insurance ombudsman for assistance, and don't be afraid to call the state representative's office for your voting district. I had to do that once when I was desperate to get my dad a surgery that Medicaid was refusing to allow. The staffers were quite good, and as it turns out, phone calls from politician's offices do make a difference to insurance company executives.

 

If they can't provide you with the same service "in network", I'm pretty sure someone can help you force them to let you have it where you can and without the out of network deductible. There are a FEW state laws that protect the consumer along these lines it's just that most people do not know about them, and the insurance company isn't going to volunteer that information.

 

Also, there should be someone in the billing department at the facility who is well versed in dealing with this as most anorexia treatment facilities have out of state patients. Just tell them what you need.

 

:grouphug:  :grouphug:  :grouphug:

[lmrich]

One of my students (age 12) went to a treatment center in Raleigh NC for the summer. She is currently relapsing and is seeing her therapist daily now. I think one of the best things you can do is talk to her therapist for recommendations. I am sorry you have to go through this; it is so difficult. 

[DawnM]

Hugs.

 

I have no recommendations.  I am sorry.  My friends have their daughter in treatment but it isn't just for anorexia, it is for some other issues as well.  She said after insurance, their cost is $8K per month.  

 

 

 

[Jenn in FL]

:grouphug:  :grouphug:  :grouphug:

 

Rule #1  Breathe. A lot.  Seriously.

 

Rule #2  This totally blows (for everyone,) but you will get through it.

 

Rule #3  Anyone who says (or thinks) this will be a quick fix... is either lying or delusional.   :closedeyes:

 

Rule #4   There are some amazing resources available:

 

aroundthedinnertable.org  is a phenomenal resource for caregivers

 

nationaleatingdisorders.org

 

anad.org

 

 

I have recent firsthand (as a parent) experience with UCSD. 

 

Feel free to PM me.

 

:grouphug:  :grouphug:  :grouphug:

 

Jen

 

 

 

 

 

 

 

 

 

 

[purplejackmama]

I'm so sorry. I am not sure where you are located, but I know a few people who went here, in Florida.

 

http://www.canopycove.com

 

Prayers for your family.

[LMV]

We haven't exactly been where it sounds like you may be but we have been in a similar situation so perhaps I can offer some support.  Our fifteen year old daughter’s biological parents used food withholding as part of their abusive practices.  They were also physically and emotionally abusive and it was really a mess.  She was severely malnourished and had other medical problems as a result of the physical abuse when we met her.  She never had the distorted body image and never truly intentionally restricted but after awhile starvation had a bit of a numbing effect so it was hard for her to eat when she was upset and she was also very not used to the sensation of having food in her stomach which made refeeding more of a challenge.  She was diagnosed with Food Avoidance Emotional Disorder (which is now part of the ARFID group in DSM-5) and we refed when she was ten when she came to live with us.  We refed at home using a modified Family Based Treatment (FBT) approach with a therapist who also had experience in attachment/adoption issues. She dealt with a lot PTSD issues about a year after that partly because one of her biological parents was stalking her but the child psychiatrist also felt that some of the starvation was in the short term pseudo protective because of the numbing effect.  She/we did TF-CBT for the PTSD with extra meal support through this and now at fifteen she is really doing very well. She is really an amazing young woman and we're blessed to have her as part of our family.  

 

Some thoughts:

-Malnutrition is a medical issue whether it is caused by the social situation(including food scarcity, and abusive food withholding), a psychiatric illness, or an underlying medical/organic illness.  Addressing the malnutrition promptly and effectively, screening for possible complications, and monitoring for refeeding syndrome need to be priorities regardless of the etiology.

-Has your daughter been seen recently by her pediatrician? Are they involved in her ongoing care? I would not delay medical evaluation and I would work hard to ensure that a physician was monitoring closely during the renourishment/refeeding process.

-I would not proceed with a treatment plan that didn't incorporate nutritional restoration as the top priority.

-If you're looking at evidence based treatment for eating disorders the unfortunate reality is that we're probably still a few decades away from having a good evidence base.  Of the literature that exists, the strongest evidence seems to be for FBT (at least in children 12-18 with anorexia nervosa) but unfortunately there just isn't the evidence base we have for some other conditions.

-As far as residential programs, this isn't something we did so I can't provide any direct experiences. From an insurance standpoint, if a facility you want to use is out of network you may see if your insurance would negotiate a single case agreement with the facility (where basically they negotiate the rate upfront even though they are still not in network). Some facilities may not agree to this and you will often need to push insurance a bit (or much more than a bit) to get this but it is a reasonable request if there are not any suitable facilities that are in network or any facilities in network in reasonable travel distance. 

 

Good luck and feel free to PM if you have more specific questions. 

[clementine]

I'm thinking, because of your username, you are in NC?  I'm not familiar with specific treatment programs/centers there.  I can tell you that she probably needs a residential treatment center.  Until you take drastic measures, she probably doesn't fully comprehend the seriousness of having an eating disorder.  Being diagnosed and hearing what the physiological consequences to her body are, are so important to someone who WANTS to battle this disease.  Has she expressed the desire to get better?  

 

I am so sorry, this is a long, hard road!  I hope you find the right place for your daughter.   :grouphug:

[Southern Ivy]

Remuda Ranch comes highly recommended, however, I cannot speak from first hand experience.

 

https://www.remudaranch.com/

 

Don't know what kind of insurance arrangements they can make but it may be worth a phone call or thorough check of their website.

 

:grouphug:

I second this. Everything I have heard of Remuda is excellent. 

[abcinnc]

Thank you all for the encouraging words and hugs and words of advice. My DH and I are willing to do whatever it takes to get her better. It slipped up on us so slowly with first what first seemed to be healthy changes like eating well and exercising and then changed to very obvious food restricting, weight loss, and excessive exercise. She received many compliments which encouraged her to lose even more. She is almost 5'8" and reached her lowest point of 111 this past weekend. She has been seeing a therapist and dietician for about two months. She has also seen her pediatrician. She also recently saw a cardiologist after breathlessness and feelings her heart wasn't beating right. She wore a monitor and had PVCs, PACs and bigemines although not excessively I was told. I informed the cardiologist about her anorexia, and he said that it was unrelated to her arrhythmias and was normal for her. Now, after researching all of this more, I think the heart beat irregularities could be related to anorexia. I have hidden the scales for which she is very upset. She even started screaming at me this morning that it is her body and she can do as she wishes. This is so not like her. I know it's because she is starving. Her OCD was post- puberty.

[Plink]

Those physical symptoms can absolutely be related to her anorexia.  Starvation does awful things to the body.  You will also notice an increase in her anxiety, both the OCD and "general" panic.  Sadly, after the gut has slowed significantly, she will notice every movement it makes.  That can make eating feel physically painful for her in addition to her anxiety about it, which compounds the problem.    

 

((hugs))

 

Another recommendation for Remuda.  Their treatment plan is top notch.  It isn't a quick fix, and there will be a lot of continued work to do at home, but it will give you a good jumping-off place to start her healing process.

[Pam in CT]

:grouphug:  :grouphug: Holding your daughter and your family in the light.

 

We know two families whose daughters received treatment under the care of Yale New Haven Children's Hospital -- one nearly a decade ago, the other much more recently.  In both cases, the young women did start treatment with 7-10 days of residential treatment.   (In both cases, they had gone below 100 pounds and were encountering severe physical effects -- they were presenting as immediate pressing medical emergencies in addition to the underlying mental health issues.)  It seemed like the in-patient interval was important both to the patients and to their families in sort of hitting a re-set button, and creating a sharp delineation between Before and After regimes...

 

... and the After regime has been a long slow slog.  No easy fixes...  But slow steady progress.   :grouphug:

 

 

[Tiramisu]

The heart rhythm stuff could be related to dehydration and electrolyte imbalance. I recommend having her drink Smartwater if she's open to that.

[kiana]

OP,

 

:grouphug: . I'm so sorry you all are dealing with this. 

 

Starvation absolutely can cause heart irregularities. As a matter of fact, heart issues are one of the more common complications of severe anorexia. I would work hard to get her into inpatient sooner rather than later. Don't let it get put off by scheduling issues. 

[clementine]

I'm sure you've done a ton of research, but the lashing out at you is all part of the anorexia.  Irrational anger, meanness, and deflecting is all part of the disease.  Don't take anything she says in anger personally (as hard as that is).  

[LMV]

Thank you all for the encouraging words and hugs and words of advice. My DH and I are willing to do whatever it takes to get her better. It slipped up on us so slowly with first what first seemed to be healthy changes like eating well and exercising and then changed to very obvious food restricting, weight loss, and excessive exercise. She received many compliments which encouraged her to lose even more. She is almost 5'8" and reached her lowest point of 111 this past weekend. She has been seeing a therapist and dietician for about two months. She has also seen her pediatrician. She also recently saw a cardiologist after breathlessness and feelings her heart wasn't beating right. She wore a monitor and had PVCs, PACs and bigemines although not excessively I was told. I informed the cardiologist about her anorexia, and he said that it was unrelated to her arrhythmias and was normal for her. Now, after researching all of this more, I think the heart beat irregularities could be related to anorexia. I have hidden the scales for which she is very upset. She even started screaming at me this morning that it is her body and she can do as she wishes. This is so not like her. I know it's because she is starving. Her OCD was post- puberty.

 

-How old is your daughter?

-What therapy modality is her therapist using? 

-I agree with you that I wouldn't dismiss the arrhythmia as unrelated to starvation (remember the heart is a muscle). While some occasional PVCs and PACs can be perfectly benign in healthy individuals, your daughter is not a healthy individual so I wouldn't rush to that conclusion.

-I know this is hard but I think your first priority has to be on stopping the weight loss and starting the process of nutritional restoration.  Maybe that can happen at home (but if you are going that route you do need regular physician visits and daily lab monitoring initially to assess for refeeding syndrome and associated complications), maybe that is safer to start in the hospital, or maybe that will only happen in the hospital.  I would discuss your options with the pediatrician and come up with a plan.  Continuing with a plan that just leads to more weight loss is not something I would advocate.

[Punks in Ontario]

I've had a daughter with anorexia.  It was a terrible time.  For us, inpatient was the only way to restore the weight for quite a while.  They will also monitor the heart issues.  I'd echo other posters in saying that it, as well as much of the emotional concerns are part of the disease.  With weight gain, thinking and emotional challenges will improve.

 

My dd spent the greater part of 15 months in hospital.  When she was at home, we had to watch her almost every minute for food avoidance behaviours and suicidal/irrational decision.  Please also monitor internet activity.  There are so many blogs, twitter accounts and chat rooms that encourage harmful eating.Luckily here, it was covered by our provincial health plan.  A couple of difficult cases were actually sent down to Remuda at taxpayers expense for help.  My dd was nearly one of them.

 

In our case, eventually, dd  did begin to eat decently as she realized the futility of what she saw her eating disorder fellows doing.  Anxiety has still been an ongoing issue many years later.

[catz]

This program has one location local to me and gets excellent reviews.  There are a number of locations and they do inpatient/outpatient.  Just another option to check out.

 

http://www.emilyprogram.com/

[clementine]

This program has one location local to me and gets excellent reviews.  There are a number of locations and they do inpatient/outpatient.  Just another option to check out.

 

http://www.emilyprogram.com/

 

I agree with this one, but there aren't many locations yet.  Their website is helpful.  

[abcinnc]

I have been researching a lot. Thank you for your opinions on my dd's heart issues. I know this is serious, and we are at a critical time. I plan to get her records from the cardiologist asap. For those of you who gave personal stories, it is comforting to know others have been where I am and are willing to share their stories. The links are so helpful, too. I'm checking out all of the programs and have found that some are in network for my insurance. My dd is going to be evaluated for orthostatic hypotension as she told us she is feeling dizzy at standing from lying down and sometimes even from sitting. Someone asked about my dd's age - she is 16 years old, so she would need an adolescent program.

[Tiramisu]

I have been researching a lot. Thank you for your opinions on my dd's heart issues. I know this is serious, and we are at a critical time. I plan to get her records from the cardiologist asap. For those of you who gave personal stories, it is comforting to know others have been where I am and are willing to share their stories. The links are so helpful, too. I'm checking out all of the programs and have found that some are in network for my insurance. My dd is going to be evaluated for orthostatic hypotension as she told us she is feeling dizzy at standing from lying down and sometimes even from sitting. Someone asked about my dd's age - she is 16 years old, so she would need an adolescent program.

 

I hope you find the answers you need for your dd.

 

I don't have orthostatic hypotension but another type of orthostatic intolerance called POTS (postural orthostatic tachycardia). I have never had anorexia so I can't comment about that but I it makes sense that someone suffering from it will also develop an orthostatic problem with or without any other abnormalities. With any type of orthostatic problem, proper hydration is key. Whenever I have had problems like viruses, infections, stress, ongoing GI problems with malabsorbtion, etc. that cause my heart rate and blood pressure to malfunction, how bad it will get can be influenced by whether or not I can keep my blood volume high. My cardiologist said the same thing. He told me if I can work on the factors I can control like fluids, it will make the difference between having my body get regulated again within weeks instead of months. I realized with anorexia that it's much more complicated. Smartwater or gatorade or broth are much, much better than water for people with orthostatic issues. I also salt everything, and will salt my water if I don't have the other drinks available. Magnesium helps my irregular beats like PVCs, etc., but you would want a doctors guidance on that.

[kiana]

Hypotension is another classic symptom of inadequate energy intake. See http://emedicine.medscape.com/article/912187-overview and scroll down to the signs and symptoms.