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lavmom

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Reply with quote  #1 
Hi

My first post - my 20 year old D has suffered with AN for 2.5 years.  Finally at a recovery center and is hitting goal weight after being there for 3 months; problem is she has been diagnosed with borderline personality disorder while there -  has acted out with extreme self-harm, substance use (while in 1 week of step-down) and some suicidal ideation. She was admitted to a psych ward for a week because of her behavior.   Meds do not seem to be helping. 

Recommendation has been to get her somewhere to treat the substance/ mood disorder/depression; very few have ED treatment as well.  We will be moving her to a substance abuse treatment with dual diagnosis for mood - but she will have a lot of freedom with her meal plan.  (shopping and making her own meals).  I am nervous that we may be giving her too much freedom with the ED and we will be right back where we started  - dangerously low weight and substance use just to eat a meal... 

Any suggestions?  I am exhausted and worried.
Foodsupport_AUS

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Reply with quote  #2 
Welcome to the forum. Having been at this for a few years I can understand that you are exhausted by the process. It is great that your D is getting close to weight restoration, though as many of us have found this often only makes ED thoughts much worse, often associated with lots of other behaviours and distress. It does take far too long .

I really can't offer you a suggestion of treatment places, I think from your post you must be in the US? What does her current treatment team suggest as to where to move to next?

One thing I can let you know is that much of the behaviours - self harm, suicidal ideation, depression can be a part of the AN. Borderline personality disorder is often offered as a diagnosis for the severe emotional dysregulation that happens during recovery from eating disorders. It was suggested for my D, and there have been many others on here as well. With time and continued nourishment many of these just disappeared. Your D sounds as though she needs a lot more support and for some time to come. This often is needed for some months after weight restoration, unfortunately it is common for ED treatment to want to stop at that point, when they are nowhere near better. So your thought that she needs ED support is I agree the first and foremost. If she is malnourished the other things are just going to continue on anyway. She needs that meal and ED support too. 

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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.
HateEDwithApassion

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Reply with quote  #3 
Lavmom,
Did you look into Insight in Chicago? ERC wanted my D to transfer there when she was asked to leave for her own bad behavior. They have a dual diagnosis program there and also residential treatment. Insight is owned by ERC, so the eating side of treatment should be the same. 

As far as living there in supported living, the downside is that they are on their own unless we want to move down there and monitor.  I am not willing to do that - so they can get in trouble or exercise or do whatever. But Insight might still be an option.



__________________
19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
tina72

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Reply with quote  #4 
Hi lavmom,
the behaviour that you talk about - self harm, suicidal thoughts, substance use - can really be caused by the ED. My d had severe depressions, self harming and suicidal thoughts while being malnurished until she was proper WR (and that means more than the "goal weight" the professionals set, this is often too low).
It is also normal that this behaviour is getting worse at the end towards WR. Some here call it "extinction burst". The ED tries to get her back for a last time very strongly.
So in your shoes I would take ED therapy and eating first. If this is not monitored, you risk a severe set-back. It is quite possible that all the other problems fade away (like in our case) when you are strikt now and keep on fighting the ED.
Tina72
cnkinnh

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Reply with quote  #5 
Not sure how much help I can be since my daughter is an adolescent, but I will share our experience.

WR is a necessary first step, but it doesn't always fix everything. I feel like we spun our wheels, feeding and feeding our D, waiting for things to improve for FAR too long before investigating other issues/treatments. We did FBT with our D for well over a year before her therapist recommended getting neuropsych testing for her to see if she had any additional issues going on, because she was unable to take responsibility for her eating, at all. That's when we finally got a dx of MDD with melancholic features. But it was still almost a year later, when she had declined a lot more, when we finally realized that FBT at home just wasn't nearly enough for her. So we got her IP at ERC, where they got her WR, but they said her MDD was very severe and they had her on suicide watch for several weeks. At one point they were saying that they couldn't do anything more for her, and we should look for another facility that could treat both, and they recommended that we look into ECT for her.

So we did some investigation - the facilities we looked at were: UNI in UT, Alexian Brothers in IL, U of Iowa, UCLA, Rogers in WI, and McLean in MA. Some of these programs are covered by insurance, some are not. Based on the few conversations I had, U of IA would've been my first choice, but they said they had a long waiting list.

And then...the Abilify that ERC had started her on finally kicked in and she improved. So we've ended up not needing to transfer her out of ERC.

You said that meds do not seem to be helping. What have you tried? Have you looked into genetic testing to help identify which meds she'd be more likely to benefit from?

If you feel that you've exhausted all options with meds, then you might want to look into ECT for her. From the bit of investigation I did, it appears to be a very safe and effective treatment.

__________________
15yo D, first diagnosed 2015 with RAN. Diagnosis changed several times along the way, they are currently saying lifelong mild ARFID, complicated by major depression and AN starting age 13. Everything is atypical with her. FBT less and less effective after 2+ years. 
sunnyakela

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Reply with quote  #6 
My daughter is 16, so our experience with treatment will be slightly different, but we have been struggling with co-occurring conditions and trying to find treatment for both. We are dealing with self-harm, suicidality, OCD, MDD and anxiety.

Our daughter spent part of October 2016 at Alexian Brothers. They are recommended for ED patients with severe co-occurring conditions. They did move her along in weight restoration, but we felt like we were always trying to track someone down who was out of the office/on vacation. Communication wasn't great. They kept her safe, but since insurance pushed us out after two weeks, we aren't sure what work she did on any of her other diagnoses. 

We recently contacted ERC in Denver, but they declined because of self-harm. We contacted Klarman, but they felt that she was too close to EBW and wouldn't be able to stay long. They suggested we try their OCD program, which could move her over to the ED program if she started to lose weight. Since we know that she will completely stop eating, we don't really want to put her in a yo-yo situation. We have also talked to their Mood Disorder program, but they don't work with insurance, even though our insurance lists them as in-network. We have also talked to Rogers Behavior Health, which has multiple programs, but we hesitate there for the same reason (programs are separate). My husband went out to a hospital called Cumberland Hospital in VA. It has a longer program for adolescents who can't manage their chronic conditions. (I know that doesn't help with your adult daughter, but just for the sake of anyone else reading). They are out of network for us, so that will be a last resort situation. We are currently talking to UCLA who has better protocols for self-harm. Patients can go back and forth between ED and Psych, which are connected. We are headed for the one-week session at UCSD at the end of this month, just hoping to get more control over the ED part. 

We have tried many meds and ECT and TMS for the depression without much luck. TMS has a lower success rate, but can be done outpatient with little disruption to her life. My daughter did have a bit of memory loss with ECT, but it was mostly while she was having the procedure done. We don't notice much deficit now, four months later. We are seeing a bit of improvement with Trintellix, although she says that what we are seeing doesn't match what she feels. 

We are being encouraged to put her in long-term care somewhere, but finding the same obstacles that you are in locating a place. If I can answer any questions about any of the above, let me know. I know exactly how exhausting all of this is.




hopefulmama

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Reply with quote  #7 
Hi lavmom - 

I'm so sorry for what you are going through. My daughter was also diagnosed with BPD/mood disorder a couple of times during ED. She was 17-19 at the time.  We thought she was weight restored, but in fact later realized she wasn't. She had tracked at 75th-80th percentile her whole life.  Once we got her back to (or in fact above) that range, we saw real brain healing.  It wasn't a light switch, but it was generally forward moving and discernible over a period of months. So I would first say don't underestimate the power of ED to look like so many other things, including BPD and mood disorders. Having said that, of course there are times that both are there as cnkinnh shared above. 

We were lucky to work with a leading DBT expert in the country  - Kay Watt - when my d was sick.  She has been doing Marsha Linehan adherent DBT forever and was the first to bring DBT to Texas. I had a parent who had received a dual diagnosis who I was trying to help figure out treatment options so I consulted Kay.  She indicated that the challenge is that we know that DBT is the most effective treatment for BPD. However, she is currently not aware of an ED facility that is doing adherent DBT.  They may be doing parts of DBT, but not adherent DBT as developed my Marsha Linehan. Because of that, this was her suggestion for my friend:

The research for effectiveness in DBT for borderline shows highest recovery in persons who do standard once a week, 2 hour DBT group plus individual therapy with an adherent DBT therapist. Linehan recommends 3 rounds of the 24 week group. 

 

So one idea is to get her in a place with a good ED IOP or PHP that also has great DBT therapists nearby and add that to the ED treatment. 

 

Hot spots for the best are Seattle, Portland, Raleigh Durham, Atlanta. 





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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!
mjkz

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Reply with quote  #8 
I suffer from treatment resistant depression and I can't say enough about getting genetic testing.  I've been through almost every drug on the market as well as ECT in various combinations.  I was pretty disappointed when I saw the results of my genetic testing since I only had 3 drugs to choose from and one was the active ingredient of an antidepressant that I was already on.  I tried it though and it has made a huge difference.   We did the same with my daughter and we made the most progress Ed wise only after her depression was adequately treated.

I tell people this.  If people start that day (normal people-take that for what it is worth) with an even mood say at five (with zero being depressed and 10 being manic) on a zero to ten scale.  Nothing bad, nothing good, even solid mood.  I started my day at zero so every little thing that happened just pushed me down below zero.  I was already overwhelmed before anything happened so anything, even a little thing pushed me under.  Once I got on a good med regimen that worked and started waking up at a 5, it was amazing.  I could see why people didn't want to kill themselves all the time.  I could handle things as they came along and not want to hang myself because the mail was late.

My last episode of depression was so bad that I was done.  I did my will, said my good byes and had everything planned out.  My team as a last ditch effort said try the genetic testing.  It was quick, fast (swab of the mouth and had the results 3 days later) and gave me a list of meds that my body could metabolize well, a list that we shouldn't try (and that list explained some of the totally weird side effects I had on meds) and meds that I metabolized too fast (like caffeine-I can drink literally grams of caffeine a day and it has no effect on me nor do I get headache if I stop using caffeine).  I switched meds the day I got the results and within a month I was waking up at a 2-3 in stead of zero.  By six months I was solidly at a 5 and even higher at times.  It truly saved my life.  It is covered my most insurances and if not, is worth getting done out of pocket and just getting the psychiatric drugs tested for (the full panel does just about every kind of drug you can imagine).
pattyk

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Reply with quote  #9 
Lavmom,
Looks like you got lots of input and hopefully you already have a plan in place.  I have a daughter with BPD (20 years) and ED (7 years).  20 different treatment attempts.  BPD made it difficult for her to stay in treatment and made it so caregivers wanted to push her out of the facility even though she was not WR.  The information about ED (malnourishment - anorexia) causing BPD symptoms is spot on.  The question to ask, is can you recognize any of the BPD symptoms significantly prior to her ED?  if not, her symptoms could indeed be the result of the ED with great hopes of remission with true WR. 

If the BPD was preexisting, I can give you a list of treatment places to avoid - inappropriate treatment of the BPD which exasperates the ED.  Finding a place that adequately treats both - necessary for recovery - can be difficult.  We did not try insight in Chicago but ERC was somewhat helpful - even though we had not understood the BPD diagnosis at the time. 

I believe working on the BPD is crucial for ED recovery if it is the underlying disorder as in my daughter.  DBT has been said to offer the best hope, but it doesn't work for everyone (didn't help my daughter.) Additionally, finding a program that truly follows the Linnahan model is near impossible especially at an ED treatment center.  But here is the hope- finding the right sustained therapeutic connection ( the key is in the relationship between the therapist and the patient) can create the environment for a breakthrough and recovery.  I would avoid treatment centers that only offer one hour of individual therapy a week.  I would also look for centers that have a comprehensive step down program that has the option to keep consistency with treatment team - residential to PHP to IOP.  Avoid - like the plague- any center that uses punitive measures as a means of gaining compliance - it only works in the short run if at all for BPD.    Ultimately, my daughter has found true help and hope at Fairhaven in TN.  She finally made the right therapeutic connection with her counselor and emphasizes the other difference is that all the staff are loving and supportive.  We are not out of the woods yet, but this is my first real hope in 7 years.  You are welcome to email me if you would like.  Blessings.

EDAction

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Reply with quote  #10 
Hi lavmom,

Did D show significant signs/symptoms of BPD prior to ED?  If the answer is no, then your best bet would be to focus on the ED as there is a good chance the BPD traits were brought on by ED and therefore will probably resolve as the ED is treated.  If the answer is yes, then you have to focus on both.

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DD diagnosed with anorexia at 14; FBT at home with the help of psychologist and medical dr; 3+ years later and doing well (knock on wood)
atdt31_US

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Reply with quote  #11 
With respect to you saying the meds do not seem to be working:  I wonder if you have considered getting the genetic testing done, which can guide what meds an individual will do well on.  It is a cheek swab (not even a blood draw) and took about a week for results.  You can look on the Kartini Clinic blog and see Dr. O'Toole's entry about their use of genetic testing before prescribing psych meds - at that time they used Genomind so you might want to search the entries for that word (sorry I am not computer literate enough to link you).  

If your child tests as someone who will not get benefit from the meds being tried, the results will also show possible alternative meds or even evidence that your d needs higher than a normal therapeutic dose of the same med she is on. On the other hand, the test might confirm that genetically, your child would be expected to derive benefit from the med she is on, at normal doses, in which case you get that info to process with the medical team. 

I am sure there is a down-side to testing (future insurance primary in my mind) but I needed to know so we did it and I am glad we did -- steered us away from the medication the doctors were contemplating for my d.

Good luck.  

__________________
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, I believe, based solely on weight being less than 75% of Ideal Body Weight (not sure if he also considered low bone density to be a significant nutritional deficiency - not positive he knew her bmd).
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