Anonymous
07/24/2016 14:12
Subject: Re:Anorexia
OP, here's another blog post you may find relevant:
https://www.kartiniclinic.com/blog/post/response-to-ny-times-article/
https://www.kartiniclinic.com/blog/post/response-to-ny-times-article/
Anonymous
07/24/2016 11:06
Subject: Re:Anorexia
Anonymous wrote:Anonymous wrote:The forum on this website is very helpful: www.aroundthedinnertable.org
OP, are you already familiar with the above group and discussion forum?
Please visit them if not. The people there have been through it all and are an amazing source of knowledge, evidence based treatment options, and support.
I am so sorry that your daughter has been suffering for so long.
In many cases of long term anorexia it turns out that the patient was released from the inpatient treatment before truly reaching weight restoration. Just hitting a standardized percentile on a chart isn't necessarily enough to bring back proper brain function.
In terms of treatment centers on the East Coast, Children's Hospital of Philadelphia is considered the best. http://www.chop.edu/centers-programs/eating-disorder-program
Agree with all of the above. Also, the University of California San Diego has a great, evidence-based 5 day intensive program for adolescent anorexia sufferers & their parents. It helps give the parents the tools necessary to help their children work towards recovery at home: eatingdisorders.ucsd.edu/treatment/oneweek-intensive-treatment-programs.html
Anonymous
07/24/2016 10:48
Subject: Anorexia
Anonymous wrote:Thank you so much for your kind words and support.
Yes she was diagnosed at 7the most heartbreaking moment of our lives. My daughter is 15 now. We have been on this toad for a long time. we have done residential care many times, as well as inpatient hospital stays and in desperate cases psych unit stays. We've well exhausted insurance coverage and pay out of pocket for whatever she needs. Her last discharge was two weeks ago after a residential stay and then partial program. Its so ingrained in her. She is medically stable for now I guess compared to her past but not enough for me.
I am glad to hear some of you recovered. I wish the world for you, after enduring something so insidious you deserve only the best in life.
Medically stable is not the same as weight restored.
As you know!
The other excellent eating disorder clinic I am aware of is on the West Coast -- the Kartini Clinic.
They have excellent blog posts on anorexia treatment and here is a good on on determining ideal body weight.
https://www.kartiniclinic.com/blog/post/determining-ideal-body-weight/
As anorexia hit your child at age 7 (way before puberty hit) she had the most growth potential. It is possible that her weight restoration goal was set too low. This could be the reason for her repeated relapses.
Anonymous
07/24/2016 10:41
Subject: Re:Anorexia
Anonymous wrote:The forum on this website is very helpful: www.aroundthedinnertable.org
OP, are you already familiar with the above group and discussion forum?
Please visit them if not. The people there have been through it all and are an amazing source of knowledge, evidence based treatment options, and support.
I am so sorry that your daughter has been suffering for so long.
In many cases of long term anorexia it turns out that the patient was released from the inpatient treatment before truly reaching weight restoration. Just hitting a standardized percentile on a chart isn't necessarily enough to bring back proper brain function.
In terms of treatment centers on the East Coast, Children's Hospital of Philadelphia is considered the best. http://www.chop.edu/centers-programs/eating-disorder-program
Anonymous
07/24/2016 07:14
Subject: Re:Anorexia
Anonymous wrote:Hi op. Me again. I also wanted to add.
Since it started so young it is very possible your daughter had another medical condition going on that made her averse to food to begin with
This was the case with me. I had food allergies and generally was never a big eater and food made me feel sick so when I needed a coping mechanism starving myself wasn't a far stretch
Do you suspect she has any allergies or other medical issues?
Not that it helps too much after several years, but maybe it helps you understand the why more
I know for many people they can't understand how one can starve like this
Is she managing her own food intake now or are you on a certain plan or requiring her to eat etc
I'm so sorry to read your post OP - this is such an awful situation for you, your daughter and your family. I will tag on to this post above because that was our experience too. Also I can see you are trying to leave no stone un-turned. Our DK was diagnosed last year with several tick illnesses - we got lucky and had some positive tests which can be rare as many of the tests are very unreliable (tick diseases can cause every symptom imaginable and mainstream doctors can't figure out what's going on and refuse to make clinical diagnoses but there are specially trained doctors who can and do treat). Anyway, anorexia is one of the symptoms and we were greatly concerned in the years prior to diagnosis if DK had an eating disorder because DK just wouldn't eat for long periods of time - days actually or would eat very little of the same foods - I realize this may be completely different from your daughter's trajectory. However DK went from not liking food (taste was off evidently and bugs were causing lack of hunger etc) to a place where DK gained 2 pounds a week when antibiotics were started for treatment at age 14. Treatment is years long and DK still has periods of little hunger but weight has stabilized now.
DK also showed signs of anxiety the last year before we figured out what was going on and had started cutting. Many other unrelated symptoms in other major body systems (cardiac, respiratory, joints etc) showed up as well after years of these diseases taking over. All this occurred from a tick bite(s). It was very hard to tease out the symptoms from a 14 year old because they were mostly invisible to us.
Some kids present just with the neuropsych stuff though so I wanted to bring it to your attention - especially since your DD was so young when this started as was our DK. I will also let you know that thousands upon thousands of patients have had illnesses such as your DD's and others that were not affected in any way by treatment for whatever they were diagnosed with - this failure to respond to prescribed treatment is a sign of an underlying bacterial type infection. Once they figured out they had these diseases they were then treated and made great progress.
I sure hope you find some things that work from the suggestions given in this thread.
Anonymous
07/24/2016 03:04
Subject: Re:Anorexia
The forum on this website is very helpful: www.aroundthedinnertable.org
Anonymous
07/23/2016 23:48
Subject: Anorexia
Anonymous wrote:Thank you so much for your kind words and support.
Yes she was diagnosed at 7
I am glad to hear some of you recovered. I wish the world for you, after enduring something so insidious you deserve only the best in life.
My relative found success here:
https://www.eatingrecoverycenter.com/
They are from an east coast city and did residential and then partial treatment at this place. My relative is doing well now. I wish you all the best. Maybe Jeff could connect us somehow for more communication?
My sister is also a successfully recovered ED person. She has a career, family, stability. I guess it runs in our family. In college I ate one granny smith apple per day for a few years. I am ok now though. Hugs to you OP.
Anonymous
07/23/2016 23:46
Subject: Re:Anorexia
Hi op. Me again. I also wanted to add.
Since it started so young it is very possible your daughter had another medical condition going on that made her averse to food to begin with
This was the case with me. I had food allergies and generally was never a big eater and food made me feel sick so when I needed a coping mechanism starving myself wasn't a far stretch
Do you suspect she has any allergies or other medical issues?
Not that it helps too much after several years, but maybe it helps you understand the why more
I know for many people they can't understand how one can starve like this
Is she managing her own food intake now or are you on a certain plan or requiring her to eat etc
Since it started so young it is very possible your daughter had another medical condition going on that made her averse to food to begin with
This was the case with me. I had food allergies and generally was never a big eater and food made me feel sick so when I needed a coping mechanism starving myself wasn't a far stretch
Do you suspect she has any allergies or other medical issues?
Not that it helps too much after several years, but maybe it helps you understand the why more
I know for many people they can't understand how one can starve like this
Is she managing her own food intake now or are you on a certain plan or requiring her to eat etc
Anonymous
07/23/2016 23:38
Subject: Re:Anorexia
Anonymous wrote:Op. Does your daughter have exercise addiction or some other facet that causes her to lose quickly or is only restriction?
No she mainly restricts. She walks some but I always go with her and we try to limit that.
Anonymous
07/23/2016 23:34
Subject: Anorexia
Have you researched opportunities in other countries? Obviously programs in this country are not working for your DD...
Anonymous
07/23/2016 23:02
Subject: Re:Anorexia
Have you tried klarman at McLean?
Anonymous
07/23/2016 23:02
Subject: Re:Anorexia
Op. Does your daughter have exercise addiction or some other facet that causes her to lose quickly or is only restriction?
Anonymous
07/23/2016 22:06
Subject: Anorexia
Thank you so much for your kind words and support.
Yes she was diagnosed at 7 the most heartbreaking moment of our lives. My daughter is 15 now. We have been on this toad for a long time. we have done residential care many times, as well as inpatient hospital stays and in desperate cases psych unit stays. We've well exhausted insurance coverage and pay out of pocket for whatever she needs. Her last discharge was two weeks ago after a residential stay and then partial program. Its so ingrained in her. She is medically stable for now I guess compared to her past but not enough for me.
I am glad to hear some of you recovered. I wish the world for you, after enduring something so insidious you deserve only the best in life.
Yes she was diagnosed at 7
the most heartbreaking moment of our lives. My daughter is 15 now. We have been on this toad for a long time. we have done residential care many times, as well as inpatient hospital stays and in desperate cases psych unit stays. We've well exhausted insurance coverage and pay out of pocket for whatever she needs. Her last discharge was two weeks ago after a residential stay and then partial program. Its so ingrained in her. She is medically stable for now I guess compared to her past but not enough for me.
I am glad to hear some of you recovered. I wish the world for you, after enduring something so insidious you deserve only the best in life.
Anonymous
07/23/2016 21:27
Subject: Re:Anorexia
Sometimes inpatient can worsen it
She is surrounded by it daily that way
There are constant new patients that are sicker and the girls sit and compare to each other
It can make it worse
Also there's a constant talk and focus
Please provide her age.
I posted earlier about the puppy. I struggled with it my entire life off and on and I can tell you the thing that helped the most was distraction and hope
You need to give her something to live and take her mind off of it, she needs to find a passion or a purpose
Volunteer work, helping a mom with a new baby, painting, writing.
If meals cause anxiety, have her eat a bar and be done with it, it's food.
She can live off of little food as long as you can get some nutrition in her via supplements or her safe foods
She is surrounded by it daily that way
There are constant new patients that are sicker and the girls sit and compare to each other
It can make it worse
Also there's a constant talk and focus
Please provide her age.
I posted earlier about the puppy. I struggled with it my entire life off and on and I can tell you the thing that helped the most was distraction and hope
You need to give her something to live and take her mind off of it, she needs to find a passion or a purpose
Volunteer work, helping a mom with a new baby, painting, writing.
If meals cause anxiety, have her eat a bar and be done with it, it's food.
She can live off of little food as long as you can get some nutrition in her via supplements or her safe foods
Anonymous
07/23/2016 21:25
Subject: Re:Anorexia
OP, I would recommend ERC. They have both inpatient and residential. They are wonderful for getting to behavior. Id also recommend a good DBT group after release and perhaps a body image group. This is what helped my DD