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Parent support group and speaker in Washington, DC this Friday 9/30Open in a New Window

Just in case, wanted to put up a notice that our parent group in Washington, DC (US) is having a meeting this Friday.  There will be time for chatting and sharing both before and after our speaker. I'll put the details for this Friday and the other two fall meetings below. If you're local, you can just show up. It would also be great to hear ahead of time from anyone who is planning to come or would like to be included on our list serve.

Millie Plotkin and Carrie Arnold are joining us to speak to speak to the group this fall. In her work as the informationist for the Eating Recovery Center, Millie maintains the Eating Disorder Information Gateway, a free, publicly accessible database of citations on eating disorders. Carrie Arnold is a science writer, blogger, and author of several books, including Decoding Anorexia: How Breakthroughs in Science Offer Hope for Eating Disorders.

Each meeting will have time for sharing and support as well. Below is our schedule:

September 30, 2016, 7pm : Millie Plotkin, Informationist, Eating Recovery Center “I Read It On the Internet”: Sorting the Useful from the Useless in Online Research

October 28, 2016, 7pm: Speaker TBD

December 2, 2016, 7pm: Carrie Arnold, science writer and author of Decoding Anorexia

All meetings will be held on Friday evenings at Christ Lutheran Church, 5101 16th Street NW, Washington, DC. Parking and the meeting room are accessible through an alley between Hamilton and Gallatin Streets, NW.




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Assessment opinions/ventOpen in a New Window

Hi

I didn't really expect to be back here again. I guess that was naive. I'm trying hard to keep compassion at the forefront but frankly I'm so frustrated. Our daughter was diagnosed with anorexia last November and has been well since recovery. Recently I was led to believe she was restricting food again. Big denials of course but I put her on scale a week ago to compare with last weight in she had at dr in late August. She was three pounds down which would be unlikely with no exercise. As I've continued to watch she is restricting for sure. We talked and she came clean that she is not eating much. I told her we needed to get back on track but last night refused a meal due to high calorie possibilities. On scale again today and lost another 2-3 pounds. I'm familiar with the FBT and have the Help Your teenager beat an eating disorder book. I suppose it's been easier for her to go down road given her job and busyness and not being home as much.



My question is should I have her assessed soon ( I was thinking if things hadn't improved by Friday I would take her in) and get her into a program? She is normal weight and bmi right now but it could change quickly. It makes me so sad as we've been visiting colleges and I can't imagine how I could send her if this is going on now. Also if she is put into a program she will have to quit her job as well. I find this all such a shock due to her desire to go to college and have her job, we've been down this road and I know it's a disease but somewhere along the line a choice is made not to eat. I know that's wrong thinking but...I guess some social things have gotten to her and she needed to control something so food it was. She's so against community college but how on earth could I think of sending her with this going on her senior year and me living in the same house? She has also dealt with depression so in some ways I want to give this a chance at home before total upheaval of her life, but I felt a panic with more weight loss.



Thanks in advance for any advice

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UCSD intensive one week programOpen in a New Window

Looking into the UCSD intensive one week treatment program. 

My D is 13 and almost 1.5 years into this. She has been able to maintain a healthy weight for about a year now but mental health dragging (which I know is how it works). I just feel there is no progress being made. She is frustrated and I am frustrated. We need help!

If you have any experience or opinions of this program, please share.

Still feeling…hopfulyetscared

thanks...

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2 Years 2+ hours crying everday HelpOpen in a New Window

I can't take it anymore, my wife and I have been as patient as saints working everything we possibly can to help our D. fight anorexia, probably to a fault, but we can not continue to destroy our lives and that of our younger son and older daughter.

My D cries for at least 2 hours at home everyday since being released from IOP 6 weeks ago. We have been in treatment for 20 months, without my wife working and all the co-pays and deductibles, we are on the verge of bankruptcy and getting no where.

It is so annoying, every single improvement where we feel we make some progress is taken away as soon as ED realizes it helps, it is stopped.  Lately my daughter won't even take her medicine; she has had some good success with Clonazepam for stressful times, and Olanzapine on a regular basis. She also take Hyoscayamine Sulfate for IBS, and Culturelle.  But now she won't take anything, she knows it helps but it's like she wants ED to win. 

I can't afford more residential treatment or IOP-PHP she just goes and is compliant and maintains the facade of a perfect looking recovered patient.

Now what, my wife and I are thinking we could find a place for her to live so my 12 year old son can have a normal life, with one of us and we can alternate living with her somewhere else so at least we get half our life back.

But her loud crying everyday would get us kicked out of an apartment or hotel.  She does wonderful at school and around everybody else but when she is home around us she hates her life and us when ED is in her head.  She or I mean ED wants us to hate her, and we don't let ED get that, we LOVE her and we'll try anything but more treatment at the same places.  She has a great therapist, an okay pediatrician, and we just started with a good family therapist.

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a big messy crisisOpen in a New Window

So about 6 weeks ago our psychologist recommended to try something radical: cancel the contract & let your son feed himself. His selective mutism was getting so severe it was expanding to more people. He was well and above weight restored at 77 kilos, so we thought we had a good buffer. Desperate to try anything we consented. First week he lost a kilo. We tried getting some more input in plating, but he resisted vehemently. Returning habits showed the green monster had clearly never ever gotten less. He subsequently lost 6 more kilos. They just flew off. We didn't know how much he was losing as the psychologist was downplaying the loss in favour of the experiment. Somehow he consented to seeing a nutritionist (EDspecialised), and we are slowly regaining the lost weight, but it's messy. Some meals he plates, most meals I prepare . His mood never improved through all this. Mutism stayed. And he's growing.



So this is where we are...it feels like pre phase one. Some control, and it feels we are just waiting until he is medically unstable? The menu plan from the nutritionist is8/10 of what I used to give him. It feels like we are enabling ED. The psychologist is now recommending psychiatric intervention again and to consider meds. FBT will also not work anymore. He's incredibly angry (hence the mutism). At 13 he also stands 1.77 cm, which makes it physically very hard for me to control him.



And of course...He doesn't think there is an issue. His weight is still WR, but approaching the danger zone. His mood is ok. Even sings to himself sometimes. Reckons his relationship with us is fine & that not talking to his sister for over a year is normal. They used to be so close.

How does anyone get out of this messy stage?



My living questions ...



Boys with anorexia seem to exhibit a few other aspects I can't seem to find answers for (developmental anxiety...helping boys become men; individuating while anorexic;ways of destressing (mindfulness for males ; managing control; communication style; ) and there is even less research on their treatment .

I'm also incredibly fearful of exploring anti anxiety drugs. What is people's experience here? Can kids recover without them? what of side effects?



What to do?



We are very lost at the moment. Rollercoaster ride is going downhill at the moment, and I can't find the brake.





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Growth during recovery - Are there patterns?Open in a New Window

Hi All,

For those with recovered young adults who were diagnosed before or during puberty, has anyone noticed a pattern with weight gain before growth in height?  

Before my d began restricting last summer, she had gained several pounds and looked to be starting puberty - filling out a bit, etc.  She was age 12 at the time.  During the fall, she lost 23 pounds, was diagnosed with RAN, and we started re-feeding in late December and got her back to her original weight at the end of February.  She turned 13 in January.

In the 6 months following WR between March and August, she gained about 11 pounds, grew 1 inch, and began her period - her first period ever.  

Now for the bombshell.  During the past month alone she has gained about 9 pounds!! Huh???

Part of me worries the pendulum is swinging in the other direction toward binge eating. But the other part of me is saying her body is getting ready for another growth spurt.

D was at first completely freaked out by the rapid gain, but after talking it over and also discussing with d's nutritionist today who explained she was still within a normal weight range for her height (5 feet, 5 inches tall and about 137 lbs) d is feeling a bit better.  We are going to monitor things a bit more closely these next several weeks to identify any patterns, etc.  She will be turning 14 in about 3 months.

Has anyone experienced this phenomenon before?  Do I have reason to worry or might this be normal?  Any tips others can share?  

Thank you all for listening! 

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Refeeding CaloriesOpen in a New Window

I have been looking at the calories needed for refeeding here, and am concerned that my d appears to need much less than all of your children did in order to gain.



She is 18 and 3 weeks ago was put on a meal plan of 1500 calories a day. Prior to this, she had been maintaining her weight for 8 months on only 1000 calories a day. She is 162.5cm tall, and when we started this she weighed 31.3kg.



In the first week of eating 1500, she gained 0.7kg. In the second week, 0.3kg and in the third week, 0.5kg.



D is very worried that she has irreparably damaged her metabolism and will never be able to eat a normal amount without gaining weight. Looking on here, I see that most if your children gad to eat over 2000 in order to gain.



Will d's metabolism adjust? Or has it permanently slowed down?

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Facing a dip - but it feels like recovery!Open in a New Window

This is a post in which I am trying to sum up what we have been through after a long time I haven’t been active here at this forum. It is also a huge thanks for everyone who is sharing their experience here or simply forwarding a link to a new study, a video talk or a petition! It all makes a difference.

A very brief summary of the skeleton of our journey is this:

- D started avoiding sweets during Lent when she was 11 1/2
- CAMHS referral at 12 and Maudsley at home with the support of CAHMS and books and this forum (!)
- gained 20kg within a year and a bit and CAMHS wanted us to slow down, but we knew we had to keep pushing above average percentile.
- worst scenes at home, extreme worries about her when away from home, very real and explicit suicidal ideations, beginning self-harm (which we could stop), and almost another year after WR before period set back in.
- Period regularly for a year, catching up with friends and school (felt recovery stage 3), but still anxiety issues, sleeping badly, support from school psychologist
- Spring 2016 - released from CAMHS but can self-refer back within a year,
- Beginning of this school year means another curriculum, increased stress and an expected dip with period pause, first mentioned by my daughter herself.

But what I wanted to stress here and which cannot be stressed enough for everyone still fighting: do keep pushing, recovery is around the corner. In fact, EVERY SINGLE STEP of what you or your kids are doing IS PART OF RECOVERY. Even if it does not feel like it. Yes, we have a little dip now, which I completely expected with the start of the new academic year and an increased pressure in school. BUT - I expected it, my daughter expected it, we could anticipate, we could sit down during the holidays thinking about how we all will be able to deal better with it when it comes. We were alert enough to see the small signs of beginning thought spirals around food, we were conscious enough to have a relaxed and if necessary very explicit talk when needed and most of all, my daughter knows it is HER RESPONSIBILITY to eat. Somehow I feel this is the whole idea we were working with all these years. To make her see that whatever she would like to do and to be is to learn to take care of herself (mind that this does not involve preparing her meals, but simply that she is eating and BY EATING she is caring for herself. We are slowly getting to the preparing part and again, she is clear about how much she wants to know and wants to do and when it is too much. She still sometimes asks whether I could portion the dinner for her).

There is much truth in the '3 steps ahead and two steps back‘-pattern that many in this forum describe. And over a long time the small progress will show and even the set-backs make sense. They trained us to become sensitive to how a set back announces itself, we needed to have them again and again in order to understand the dynamic of this illness and what it does to the thinking. Now we still have them in small versions and it feels like ‚Yeah, we’ve been there, I remember. Let’s do it like we used to.‘ And suddenly the change sets it.

My daughter is 14 now, and I think my hope might not be completely in vain that when she is old enough to leave the house and wants to live on her own, we have been through so many dips together that she is sensitive enough to herself and knows how to handle them.

Good luck to everyone - this forum was the safety net we needed, make the most of it for you!
Daffodil

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Stucksville or Does.This.Ever.End.Chasing.Recovery.Open in a New Window


Does this ever end? I am the queen of high calorie cooking and having a moment of exhaustion before starting all over again this morning with the days menu. My kitchen is full of heavy cream and butter and danish butter cookies and ginger snaps and pita chips and tortilla chips and veggie chips and coke and chocolate covered almonds and high calorie granola and juices and anything else I can buy which can tempt and packs a caloric punch. Last nights dinner was a homemade pot pie with a puff pastry on top which was packed with butter and cream sauce cooked in a base of portobello mushroom broth, with fresh apple cider and cream puffs and strawberries for dessert. The night before she had gooey deep fried mozarella sticks with 1.5 slices of pizza and soda. Lunch was grilled cheese on homemade bread with pita chips and grapes and soda. This morning we are having a full fat yoghurt parfait with fresh organic raspberries and hi cal granola and OJ. I think I am more food obsessed than someone with an ED. 

Can someone somewhere PLEASE post a story of hope??? Or tell me again how your d. got well? Or remind me that someday that there is hope that my d. will have the full life that she so deserves and be able to travel and work and study and eat independently and have close relationships with friends and have a normal relationship to food and her body and be free of the ED? We are 18 months into this fight. 

Thanks for reading this and offering any support. Going back to my corner in the kitchen now with my big girl pants to count calories and fats and make the food look as attractive as possible.

Kali

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What now?Open in a New Window

I have been caring for my D since early this year, trying to do FBT at home.  She was 16, 5'6.5" with a BMI of 15 and weight of 45 kilos and we withdrew her from school to concentrate on recovery. This proved to be extremely difficult and although she now usually eats a lot more than she did at the time, she only gained about 3.5 kilos up until the beginning of this month.  IP care was not offered, though occasionally we were asked if we had thought about it as her AN was so entrenched.  Yes, we had thought about it but it was never actually given as an option, instead we were just encouraged to keep on doing what we were doing.  

At the beginning of Sept D tried to start sixth form but anxiety has meant that she has missed far more lessons than she has attended, plus she is unable to eat at school so her weight has started to fall.  Two weeks ago we were finally told that IP care would be best for her and that they want to start looking for a bed for her, but that she has to lose another kilo before they can section her (she won't go in voluntarily as she does not see that she is ill.)  At that point she decided that she will no longer go to see her therapist and will only see a counsellor at school who, of course, does not have reliable scales so cannot weigh her.

D knows that we support her going to IP as she is just not making any progress at home, if she was gaining then we would not need IP which, for us, would be preferable, but she needs to gain weight and if she can't do it with us then we have no choice but to support IP.

What worries me now is what happens next?  She refuses to see her counsellor and also won't get weighed at the GPs.  I have tried to contact her ED counsellor to ask what to do but have had no replies, it feels as though her refusal has meant we are now abandoned by her 'team'.  How does she get sectioned if she is refusing treatment?  Who can we talk to for advice?  Today she has refused both morning and afternoon snacks and lunch because I apparently made her a packed lunch that was too big - we were supposed to be going out for a picnic today but that got abandoned when she wouldn't have snack.  (The lunch was the same size as it always is.)  She has also physically attacked me because I told her I was supporting her going to IP.

Life is such a mess.  Has anyone else out there had a child refuse treatment?  What did you do?  At 17 she has the right to refuse care, or so she tells me - but I couldn't force her to go anyway because she is very strong.  I am at my wits end.  Can anyone offer advice please?

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Update on DBTOpen in a New Window

Hi all,

Have been lurking but not writing for a bit while dealing with life. Wanted to share an update of the DBT program my D is part of. In a nutshell... if you have any opportunity to do a fully adherent DBT program (meaning it does DBT the way Linehan created it) DO IT! Without question. It's been more effective in two months than what we did the last three years.

Quick history...
My D attended a DBT program for a few months that was nearly adherent but not quite. Then, she worked with a solo therapist who taught DBT strategies for a few months before this group started. Both were decent, but the Linehan DBT we're do now is way better than doing bits and pieces of DBT. I can't stress the difference enough. It's literally night and day, in my opinion.

The head of our program said he always worries when people do bits and pieces of DBT vs. the full program because when it doesn't give the same results, they think DBT failed them. Then they don't want to do the adherent program, expecting more of the same. I get it now. We go to family skills, my D does individual therapy with one of the family skills doctors, and we both have a person to call for phone coaching 24/7. 

My D is still struggling - DBT is not a magic bullet. It's not fast or easy. But, I believe it can be life changing, especially for our kids who struggle with strong emotions. Anyway, you all give me such great advice and wisdom, so I wanted to share in case this helps anyone else. Feel free to ask questions, if interested.

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Advice for Daughter making new mealsOpen in a New Window

We are new to the forum. In outpTient treatment with 14yo D with anorexia. About 50% WR. (10 # up since June, 10-15 to go) Not doing magic plate since she has met dietitians request and never missed a meal in the last 2 mo. She is able to be in the kitchen and help. Now time to start on fear foods. Pasta is on the menu tomorrow. She will refuse and then get up and make her own meal. I don't have a consequence to stop her. She remains not talking about her feelings on any of this!

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nutrition curriculum in middle schoolOpen in a New Window

Does anyone have a suggestion for a website that gives a good nutrition curriculum guideline for middle school? 

I know I've seen it in the past but can't find now.

Just left meeting at my daughters school. I had heard that the nutrition curriculum had changed this year and I wanted to look at it before it was taught. OMG…it is scary to see what the school has "purchased" to teach these kids. (Calories are bad. Sugars are bad and WILL make you gain weight and get diabetes, lots of talk of good and bad foods, etc.) The good thing is that they are open to changing it but I need help in this area. I am not a nutritionist. I am just a mom to 8th grader recovering from ED and healthy 6th grader, but I strongly feel ALL students deserve a proper nutrition education.

Any suggestions would be appreciated.

Thanks. 

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One-day workshop in Yorkshire (UK) - free spaces now opened upOpen in a New Window

Hi everyone
I wanted to let you know there are now free spaces on the one-day course for parents and clinicians, which I'm leading next Friday (30 September) in Wakefield (UK).

The Trust, who are organising it, are now opening it to parents outside the area.

So any of you who would like to come, you need to book (numbers are limited). Contact Amanda Millership, tel 01977 465 874
It's 9:15 to 5pm, at Glasshoughton, WF10
I'm planning lots of practical stuff on mealtimes and on communication and skills for kind persistence.
Maybe see you there!
 
 

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Free ED Workshop on Monday, Sept 26thOpen in a New Window

Dr. Joy Jacobs is offering a complimentary workshop titled Parents as Agents of Change in the Treatment of Eating Disorders.

http://drjoyjacobs.com/index.php/parents-as-agents-of-change-in-the-treatment-of-eating-disorders.html

Monday, September 26th 2016 at 4:30PM Pacific  /  7:30PM Eastern

If you cannot make the workshop live, you can receive a replay after with registration.

 

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