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My 18y old D, moving from CAMHS to Adult Services- what should I hope/ look for?Open in a New Window

My daughter was diagnosed with restrictive anorexia in 2013 so she has been ill for almost 5 years. She has suffered so much but worked hard to try and recover. She has had up to 30% weight loss, overexercising, severe anorexic thoughts and behaviours. She was out of school for 9 months. We have been in CAMHS for over 4 years and have had variable support including FBT, and CBT-E. The CBT-E was January to June 2017 and seemed to be partially successful, she gained weight and insight. However it was limited to 30 sessions- I think because of her 18th birthday.
The transition to adult services has been poor- she has effectively had no therapeutic input from June to date. I have felt disempowered by the CBT-E as my D was encouraged to take responsibility. She is currently around 90% weight restored but has serious anorexic thinking and behaviours. She does not eat with the family, she eats secretly mainly vegetables and fruit. She is losing weight at the moment- probably 3kg in 4 weeks but seems to have stabilised- but we dont know.
My husband and I are exhausted, our other children must be suffering.
Next week we have a big "transition meeting"- CPA- care planning meeting. What should I be asking/ hoping for? For some years I trusted CAMHS but over the past year I have lost trust and become more assertive. My first hope is that my daughter will engage- she has had long periods of not engaging. I have tied something that she likes a lot to attending appointments and this has worked recently. I will request weekly meetings (monthly ones have been suggested which I think is not appropriate). Shall I ask to attend the last 10 minutes of each appointment? Shall I ask for more CBT-E? All advice appreciated.

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'Around the Dinner Table' Online Forum for Parents and Carers

 

Help for wifeOpen in a New Window

Hi,



I was hoping someone would be able to help me, or point me in the right direction...



My wife is 32 years old, and has been ill on and off since she was 17. She's been really ill for the last six years. We are located in BC Canada, and there isn't many options available to her for treatment. She has been to the only inpatient program in the province four times already, but they do not practice any evidence based treatment, and the treatment has been unsuccessful. We were denied inpatient treatment in other provinces, and we cannot afford private treatment in the US. Outpatient treatment is our only option along with brief medical stabilization in hospital when necessary. However, we are having an extremely hard time with the outpatient team, especially her GP because there is little knowledge about eds.



My wife has a BMI of around 16.0, and she's currently restricting to around 800 calories per day, which is up from the 450 she was eating two months ago. She hasn't eaten above 1000 calories per day for probably two years. She also b/ps 1-2x per week. My wife is scared and feeling quite hopeless. She wants to get better, and while she acknowledges she is sick and needs help, she's often in denial on how serious the problem is. She sees her therapist weekly, her GP weekly, and the dietician 1-2x per month. However, what I need help with is providing evidence to her doctor and team about the medical management side of her care. Even though my wife sees the GP weekly, he never checks her vitals, let alone orthostatic vitals. He's probably only taken her b/p five times in the last several years. Even when she's in the hospital her vitals are never taken seriously, and the nurses chalk it to "her normal," so her bp of 82/40 goes untreated. He scoffs at frequent blood work because at this point it's mostly "normal" and feels it's a waste of money, and she's choosing to do this to herself. She rarely gets ecgs either. My wife and I have very little confidence in their ability to keep her medically safe, and she's scared. Her therapist is great, but she has little pull in the treatment team. She's listened to our concerns, and wants to push for proper medical monitoring, but she wants evidence to back her up so she is taken seriously by the others on the team. So, can someone help me find this evidence. How frequently she should be seeing the doctor? How often should her vitals be checked? Why they need to be checked frequently, and the proper way to check them. The same thing with blood work... how often and why? Are there any other articles that I should share with them?



We don't have the option of changing doctors or treatment teams. In this province you are considered lucky to even have a family doctor because they are limited and in high demand. I'm only one person, and I have to work full time. My wife has never been able to work, and she's taking care of our kids during the day (11 and 9 years old). She has lots of family in town, but they have all abandoned her and blame her for doing this to herself. She talks to her parents still, but not about ed because they blame her as well despite us giving them articles and books to read that prove otherwise. We are lost, and at the very least we'd like to ensure she was kept a little safer. If you could help, it would be greatly appreciated.

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Disheartened mom of Anorexic D in danger of going rogue.Open in a New Window

We are 5 months into this process (D age 12 with Anorexia) and as much as I try to stay positive and on point with everything this illness can throw at you (literally and figuratively!) I am feeling disheartened and mostly because of what I am doing / believing vs what doctors and therapists are saying...

Today I was told that I need to challenge my belief that my daughter will recover 100%.

Last week I was told that my D's weight is "fine" (on about 20th percentile for a previously 50th percentile child) and that added weight gain wont do anything to change her thought processes around food. 

The week before I was told that "my D only eats because I make her and if I stop feeding her she will just restrict again." Really, wow.  This same Dr told me not to "believe the hype in all the forums"  when I spoke to her about WR.

I feel like the lone wolf right now, the pack that are supposed to have my back has turned and I realize I am in danger of being branded as "that mother".  
I am not an expert.  I am a mom, I am led by my instincts, and what I honestly feel is the absolute best choice, treatment, nutrition for her guided by the latest most up-to-date research I can get my layman's hands on - I have no choice in doing this, its a mother's true North, doing the best she can for her kids, right? 
 Why would a therapist want to put a ceiling on recovery?  Or even voice that?  I have read a lot about the placebo effect and and that belief can change thoughts - but you have to have that belief.  Maybe she thought I needed a reality check.  But of who's reality.  

I accept everyone's recovery and journey is different, some, indeed, may not fully recover but many, many do... I want that for my child too. 

Sorry such a ramble / rant of a post, but Im feeling really down about all of this, especially when I can see the change for the good in my D with every extra kg gained and its all but not acknowledged as having anything to do with her recovery.  Bleak mom day, Mary Poppins again tomorrow xx

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Gained 2.5 kilos a week and criticized for itOpen in a New Window

My d. had lost nearly 2 kg the previous week. And there was no panic in the room. This week she increased her snacks and food intake and all the talk was about binge eating. Only once she ate 3 penguin bars and was warned by my husband to slow down (that made me furious as well). I'm at a loss. She felt bad about the weight gain. And I had a go at them for making her feel like crap. She is desperate to be done with the Camhs team and so am I at this point.

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'Around the Dinner Table' Online Forum for Parents and Carers

 

Relapse after holidayOpen in a New Window

Our daughter went from 50kg to 62kg. Was eating all meals then we went on a holiday and she ate everything and more. We arrived home on Thursday and since then has not eaten a single mouthful - 72 hours without eating (although is drinking a glass of water each meal).

What can we do - we are mortified and mystified? Can someone help please.

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'Around the Dinner Table' Online Forum for Parents and Carers

 

Canada , Ontario , GTA - Any credible ED clinics ?Open in a New Window

Hi  

We live in Vaughan,  my wife and I did research all day and came with the ED clinics at Sick Kids and   North York General Hospital.  It appears as if waiting time for an appointment may take weeks or even months! (someone told me it can take up to 10 months).

On Monday we have a second appointment with our family doctor.  Last time we saw her, with our son,  He led her to believe this is nothing wrong.  This time we will not be leaving her office without a referral.  

Once we have this referral what are our options?  is there a private clinic?    or at the very least can we do a consultation in a hospital clinic so we can start working at home? 

We can't afford to wait months. We are deeply concerned it might be too late.

Thanks

Alan





Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Need link to videoOpen in a New Window

Anyone have the link to the talk given where the speaker plays a tape while she's talking to show what it's like to have the relentless ed voice in your head??

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Review of ERC Denver Child & Adolescent Behavioral HospitalOpen in a New Window

I posted this in the Parent Review section as well, but I wanted to share in chase anyone was looking for an Inpatient/Residential provider.

I would like to start off by saying that I am a believer/proponent of Family Based Therapy/the Maudsley Approach, and I believe it’s the first step in treatment for Anorexia Nervosa if your child is medically and mentally stable and is under the supervision of a medical doctor and a psychiatrist/therapist, monitoring medical and mental stability.  I believe parents are the biggest resource in a child’s recovery and that a child should remain in their “normal” life as much as possible if outpatient care is working. 

We began our journey with one weekly one hour FBT therapy session per week, along with one medical appointment per week.  We had progress early on, but after 10 weeks, my 11-year-old d needed a higher level of care, and went inpatient for 5 weeks to a behavioral hospital in the midwest.  The hospital did a good job and got her on the right path to recovery, but due to her age, she was not eligible for their residential program.  They referred her to ERC in Denver.  I was at first very resistant to this idea, as it separated our family by over 1,000 miles.  It was difficult to wrap my brain around how all of this was going to work.  Admitting my d to ERC Denver was the hardest, and yet the best decision we ever made.  I truly believe they provided the best possible, and most evidence based care to her while there.  

She was 6 weeks in Residential and 3 ½ weeks in their PHP (day) program.  When she left Residential, she was WR.  ERC Denver is extremely buttoned up.  Their therapists, dietitians, and staff are very professional, compassionate and passionate about the work they do.  Our therapist stayed late on a few occasions to talk to me about my d’s case.   Because they focus exclusively on EDs, the staff (nursing, behavioral therapists, etc.) are all experienced and knowledgeable about the population.  The staff is consistent with message and protocols.  The patients know exactly what the expectations are, and what the rewards/consequences will be if they are not compliant with the program or their meal plan.  This is in contrast to other mental hospital models where nurses may work on an adult drug unit one day, a depression unit another day, and an OCD unit another day.   The population was around 15 – 20 patients during that time at Residential.  It was a mix of patients, some who had been through other programs that were not successful, and were referred to ERC; others who were new to inpatient treatment.  85- 90% of ERC’s population was from out of state.  I met people from New York, California, Arizona, Kansas City, Texas, Ohio and Florida.  I was impressed that many of the patients were referred from medical hospitals in other states.

Throughout a patient’s stay, during Inpatient, Residential and PHP, they maintain the same treatment team- the primary therapist, dietitian and psychiatrist.  This is so important, as it takes time to build trust and relationships.  This also maintains a continuity of care. Each patient also has an individualized behavior and meal plan.   

Most importantly, ERC is a true “FBT informed” program (their words, not mine.)  They follow the basic tenants of FBT- that the parents are the best resource for their child’s recovery.  They want to get the patients out of treatment as soon as possible.  They fully recognize that patients can get too comfortable in the routine and safety of Residential treatment.  This is where the real work begins, and it begins with the PHP program.  When your child enters the PHP program, you are required to live in the Denver area so you can bring them to and from the program.  The program is very comprehensive- 7 days a week, 11 hours a day.  The goal is to gradually turn over control to the parents.   The parents choose, portion and plate the food and supervise the meals.  Toward the end of her Residential stay, about a week prior to her transition to PHP, they had me join her for one meal a day at the Residential building, and coached me through eating with her and redirecting her ED table behaviors.  They also had me portion her food in front of her.  In the PHP building, they have a working kitchen.  There is a grocery store nearby.  You bring food on-site, you prepare it in the kitchen, and you serve it to your child in a supervised or non-supervised setting, depending on the need.  So you are completely supported.  

During the week, you have 15 hours of classes/presentations, parent support groups and multi-family therapy.  Classes cover the following topics: FBT, Nutrition, Relapse Prevention, DBT, CBT, body image, and taking care of yourself.  You also have 2 Family Therapy sessions each week with your primary therapist.  They also provide you with a full binder/guide for the PHP program.  You also learn a lot from other families, and you’re really busy during this time.  As you continue to move through PHP, you receive passes for one meal a day off site.  You can either prepare the meal at the RMH or you take them to a restaurant.  You report back on how the meal went.  Then you graduate to half days, then to a full weekend where you are feeding your child again.  I really gained my confidence back during this time.  

In doing my homework on treatment facilities, a lot of other treatment centers on their websites talk about family being a source of healing, but they are not truly rooted in the tenants of FBT.  They may offer Generalized Family Therapy, but it's not really FBT based.  So in short, I think ERC has a fantastic PHP program (and you maintain the same team, continuity, and quality of care), and not all PHP programs are equal.  ERC does offer an Independent model, if for example, the child is 17 and going off to college soon. One family had chosen this model while we were there.  ERC is not a believer in sharing weight (they say the research says it's not helpful; focus should be on "numbers don't matter," as kids' weights constantly change due to growth), so blind weights are done.

During this time, I lived at the Ronald McDonald House in Denver.  ERC has a great relationship with them, and there were about 6 ERC families living there who had kids in the PHP program.  While my d was in PHP, there were between 5 – 8 other patients (some were from Colorado and did not qualify to stay at the RMH.)  The RMH was clean, comfortable and $20 a day.  It was wonderful because it provided a kitchen, refrigerator and safe environment.  I also made several ERC parent friends while staying there, which provided a tremendous amount of support and understanding.  It was a wonderful experience.  You do need a car while staying there, as you typically make 2 – 3 trips to the PHP building a day.  It’s around 6 miles from the RMH to the PHP building, between a 20 – 30 minute drive.  My h drove my car to Denver.  Some families rented cars, and there are discount codes that can be used for National, Budget and Hertz.  Also by staying at the RMH, you have free access to the Denver Zoo and the Museum of Science, which are in the City Park, which is one mile from the RMH.  Before my car was driven to Denver, I found Uber to be easy and very reliable.   

When we left, we were provided with a comprehensive plan that would be provided to the next provider and a clear set of expectations was set up for my d. They did try to help with providing contact information for new providers, but some of the information was outdated, and I had to research it on my own.  They are very open about the fact that the road isn’t easy, and you will experience challenges post discharge.  But I feel they have provided me with the tools to face those challenges.  It has been challenging, but we’re hanging in there about 3 weeks after discharge.  They have been helpful post discharge in exchanging records with our new providers.

I shouldn’t speak for others, but I can tell you that all of us parents talked about the program with each other.  Everyone I spoke with was very happy with the program and thankful for it. Many of us are still in contact.

Insurance- their business office work worked very well with us and our insurance.  Any hiccups along the way, they immediately informed us of. They also kept up informed of the concurrent approval process and any peer-to-peer reviews.           

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Getting my son to cooperate and getting helpOpen in a New Window

Hi

My 16 yr old son lost more than 30Kg (66 Lb) over the last 6 months.  in the beginning, He had above average weight.  In just a few weeks he started a strict diet, obsessively couning calories. That degenerated rapidly to purging or not eating at all (he stopped doing that or became better at hiding it).   While he is fully aware of the mechanics and symptoms of an ED,  he was reinforced by getting positive feedback from his peer (and initially us, before we caught on )  about his losing fat which I guess cheered him on in this destructive path. 

It took us three months to recognize the problem as an eating disorder but kept running into a brick wall every time we tried to convince him we need to do something about this.  He believes being thin makes him appear more attractive.   He occasionally walks around the house shirtless (something he was always too embarrassed to do) and more than once I've seen him stop in front of a mirror, checking himself out from all sides.

We tried sending him to therapy,  after the second session he did not make an appointment for a third meeting claiming he is too busy to continue this process. The law in Canada prevents the therapist from speaking with us without his explicit consent.  So we can't even tell if he explored the issue during the sessions. 

In an appointment with a GP, he flat out lied about how much weight he lost and over how much time he lost it.   Causing the doctor to largely ignore our concern.

He did agree to see a dietician,  he saw her three times,  last week she called us after his appointment reporting that he lost  2.5 Kg (4.4 lb) in one week.  If he will lose more weight by the time he sees her next week (a likely outcome)  she will no longer be able to see him and suggested we refer him to an ED professional.

My wife and I are extremely worried,  he does seem concerned about possible health issues,   but,  at the same time either unable or unwilling to stop starving himself and going for a jog nearly every day.

Being 16 he feels like an adult and dismisses our concerns,  how can we make him see the danger and get him to let us and others help him?

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Please guide me through this....Open in a New Window

Hello all. My d is restricting, not sure how much she has lost but she is weak and nearly collapsed, white as anything a week ago. we are in London, and she has been seeing a clinical psychologist at CAMHS , only about 5 sessions so far. Earlier this week we tried to convince her to agree to a psychiatric ssessment and she refused. Last night I messed up and tried to convince her to finish her meal, (she has increased her food this week following a deal made at CAMHS) but I just pushed her too much, I guess, and this morning she was still angry, went to school with no breakfast and told me all deals were off because I cannot be trusted and now she will eat when she feels like it. She has been having a banana and water for breakfast for the last few weeks and I pack her lunch but I am not convinced she eats it. She eats half of my size portion for evening meal and had started to refuse a couple of evening meals which prompted CAMHS to ask to do a psych assessment. How do I convince her to agree? I feel like we are waiting for her to collapse, but CAMHs are saying there is nothing to be done except try hard not to alienate her or it will be more difficult. She is very resistant to communicating at all about anything, but the only hope that she will open up in her sessions.

I feel like we are just completely at her mercy and she is dictating everything as we live in fear of what she will do next. I know this is what eating disorders are about but I read all the posts and it seems that either parents or medical professionals are in control in some way. It feels like my d is completely running this show, and I don't know what to do or what to ask for or what to insist upon or even who to ask.

I'm sorry for the length of the post. I'm pretty desperate.

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Very short film - Just Breath Helps Kids Deal With EmotionsOpen in a New Window

https://amysmartgirls.com/short-film-just-breathe-helps-kids-deal-with-emotions-1b4f91dac5ad

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

I thought this was an interesting article about guilt - parents, and how to helpOpen in a New Window

http://www.tandfonline.com/doi/abs/10.1080/14779757.2017.1330703

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

What to do now?Open in a New Window

I have been visiting the site for nearly a year. I've never posted before as have always found the information and help I needed from other posts. So a big thank you to everyone as your words of wisdom have been invaluable.



My then 14 year old daughter was diagnosed with A N autumn 2016. Extremely lucky to have been referred to an excellent CAMHS team. We started FBT and initially things started well. However when the weight gain stalled after putting on 2 kg in 6 weeks and we tried to ramp up the calories, daughter became violent and to cut a long story short, she had an inpatient stay. Fast forward to now. She has been in a healthy weight range since the end of January when she was discharged. The unit stopped her taking ages to eat and chopping food into tiny pieces and stopped vomiting which had just begun prior to admission. Over the months apart from the odd wobble eating has remained consistent, she broadly eats anything including chips crisps chocolate etc and very gradually the ed symptoms seem to have lessened. However her mood seems low. Throughout all of this she has steadfastly refused to discuss how she feels with anyone. Will not engage with her CAMHS team nor with the dr and team at hospital. I feel she is depressed but I don't know how to help or get her to accept help. If anyone has any suggestions I'd be very grateful.

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

We have weight gain!!!Open in a New Window


OK, not enough.
OK, only by hiding calories in food. 
OK, only because she's inactive at home.
But finally we have weight gain!!! 

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Looking for opinions re: Center for Balanced Living..OhioOpen in a New Window

My daughter is at a weight (BMI 21.1) that is acceptable to doctors/nutritionists here. I have been told she is in early recovery from Anorexia. She eats a wide variety including pizza, ice cream, cereal, bagels etc. but still has many ED thoughts and has missed period last few months despite weight gain. She is 16 and more independent and going back to refeeding (we’ve done FBT in the past with success) seems more and more difficult without total disruption of her junior year in HS (social, doing fairly well) Could CBL be the missing piece that may help her understand her disorder more and teach her to continue to independently make her meals however making sure they contain what she needs regarding calories, fat etc.? I know they work there with with nutritionists and therapists as well as thorough medical exam. My husband and I could use help as well in continuing to deal with this as well. We are looking for a push perhaps from someone who has done or considered this program. Thank you.

Category:

'Around the Dinner Table' Online Forum for Parents and Carers


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