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annabanana

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Reply with quote  #1 
Well, today was a tough day. 

Went for a check up today for my twins and I came out so shaken up.  I knew my family doc was not too familiar with ED but didn't realize how ignorant she was.

Before she saw the girls I asked for a private time with her and explained to her that we would like to consider some types of medication for Twin1 because her anxiety of comparison is keeping her from moving forward--any type of change is throwing her off and she can't seem to get off it.  The doctor asked me for an example and I started with, "well, once I gave the girls a bag of potato chips for snack" where she cut me off and said, "why would you give them potato chips?  They are so unhealthy!  They should be eating fruits and vegetables!"  I just stared at her trying to see how much I need to explain to her in my limited time. 

Then she said, "why are you giving them snacks instead of them getting for themselves?"  I explained that I am still plating their food, to which she said that I have a control issue.  AGGGGGGGGHHHHHHHH!!!!!!!!!   I tried to explain that right now that's what I'm supposed to do but she kept cutting me off because she was so shocked that I couldn't even let my own 17 year old twins to get their own food!   It's as if she has no clue what the girls were suffering from! 

So I told her, well, I would like to consider giving T2 some independence when I separate the twins next week--she wholeheartedly agreed and said that maybe I'm suffering from anxiety of letting go.   Then I had T2 come into the office where she said that T2's BMI was high enough that she should be working out 5 times a week, instead of 3 low impact exercises that I let her do each week, because her own kids workout 15-20 hours a week and they DON'T have an ED!!!  AGGGGGGGGGGGGGHHHHHHHHH!

Then when T1's turn came, doc asked me to leave, and then later I found out that 1) she told T1 that she's 17 so she (or her mom) cannot make her take any medication if she doesn't want to and that 2) she shared what I was going to do with T2 while T1 was away.  No surprise of a major freak out afterwards when we got home.  So basically, my child of age 17 can do whatever she wants and I cannot make her do anything she doesn't want to do, even though I am the one dealing with all the 'consequences' of her actions?  What kind of garbage is that?  I'm thinking 18 in the States. 

My mind is wheeling from our afternoon with our family doc and now I feel that I need to find a new doctor who has some understanding of ED so I don't have to fight my own doc.  I called the hospital and left a message asking for help since our FBT is not going to start anytime soon.   My last message went unanswered so not sure if they'll bother with this one. 
 
Who do I call now?  Can anyone familiar with Ontario Health System give me an advise on the next step?   Could I see a doctor in a hospital instead?  Thank you for your time!
 
Mamaroo

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Reply with quote  #2 
Wow, sorry to hear that the Dr just digged a deeper hole for you :-(. that's awful! I also had a useless gp and eventually found a great one through an ED psychologist. Hopefully some one here can give you a referral to good doctor. My advice would be to keep on contacting the hospital, be the squeaking wheel. We eventually went through the hospital system and they were great! Not one time was my d seen alone for a medical.

Best of luck and sending you a lot of hugs🤗🤗🤗

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. Challenging fear foods and behaviours now.
sk8r31

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Reply with quote  #3 
It is a sad state of affairs that many physicians have little understanding of EDs, and even less about evidence-based care.

We had a very similar situation at the beginning of our ED journey with a pediatrician who stated that our d's illness was caused/exacerbated by her dad and his anxieties!

Needless to say, we left that doc and found another who was recommended...not that she was well versed in EDs, but was willing to learn & support us.  It made an incredible difference to have a medical provider who listened, took everything that we gave her to read & that we brought back from our week at UCSD, and partnered with us in support of our d.

I hope you can find a medical provider who either has some good evidence-based knowledge of EDs, or who is willing to learn.

The FEAST Family Guides and the AED brochure on medical management of EDs can be downloaded to be given to those professionals.

Hope that someone in Ontario can steer you towards some good medical resources.

Sending warm support,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
martican

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Reply with quote  #4 
Hi annabanana. All your hard work undermined! I am so sorry for this experience [frown] I don't know of any ED docs in your area but if you call the hospital and explain what is going on and what just happened, and that you are on the long wait list, you need at least a knowledgeable  provider in the meantime that they could suggest. Can you try to talk to the manager of ED program in the hospital, if the nurse can't help or gives some lukewarm answer?  
Also, did you try this below? 
 

NATIONAL EATING DISORDER INFORMATION CENTER (NEDIC)

The National Eating Disorder Information Centre (NEDIC) is Canada’s oldest national organization dedicated to helping those with eating disorders.

We provide information and support for those with eating disorders, their families, friends and health care professionals. We work to prevent eating disorders and the unhealthy focus on food and weight. We also do outreach and education to build resilience to body-image and self-esteem issues.

NEDIC holds a national database of service providers in the field of eating and weight related issues.

NEDIC can be reached Monday to Friday 9 a.m. - 9 p.m. EST at 416-340-4156, toll-free outside the GTA at 1-866-633-4220, or at http://www.nedic.ca.
 

 

THE ONTARIO COMMUNITY OUTREACH PROGRAM FOR EATING DISORDERS

The Ontario Community Outreach Training Program for Eating Disorders is funded by The Ontario Ministry of Health and Long-Term Care to increase involvement of the existing health care system in the provision of specialized services to people with eating disorders. The Outreach program is a partnership between the eating disorder programs at the University Health Network-Toronto General Hospital and The Hospital for Sick Children. We work collaboratively with a provincial network of specialized eating disorder service providers. This system provides ongoing training, consultation, and program evaluation in comprehensive assessment, outpatient, day treatment and inpatient care. The goal of the provincial training program and network is to increase the capacity of practitioners to respond to the healthcare pressures of those experiencing eating disorders. 

For more information, see http://www.ocoped.ca.
 
 
momupnorth

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Reply with quote  #5 
Hi annabanana,
I can't remember where in Ontario you are?  I can say we had good help from a pediatrician and ed team in Barrie and I would be happy to pass on the information I have.  Feel free to email me anytime.  I would agree to being the super squeaky wheel...when I have been trying to get in touch with care providers (ed or psych related), I have found calling multiple times in a day (whether I leave a message or not) gets me through and I feel like I have actually done something.  And don't be afraid to get angry with the providers/offices if you can't get the help you need....sometimes this just shows them how serious you are.
Regarding the doctor informing your daughter about not having to take meds, your plans for other d, age of consent, etc.....unfortunately, in Ontario there is no official age of consent and I child can refuse treatment at pretty much any age if they are deemed cognizant to do so.  I am currently fighting this battle in the mental health system with my d.  It appalls me how much power a young person has over their care and who doctor's/care providers can talk to!
BTW I agree that your current doctor is woefully uninformed and extremely unhelpful at the moment!
momupnroth 

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Mom Up North
mjkz

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Reply with quote  #6 
AB, cut your losses and run.  I know that is easy for me to say but your doctor is not just ignorant, she is dangerous.  Keep doing what you are doing and tell your twins that the doctor has no clue about eating disorders.  Things will continue as they have been and continue forward with your plan.  Some members near you have offered places to look for providers who are more clued in but I would not let this throw you for a loop. T1 now knows what is going to happen-this gives her time to get used to the idea. 

We had a few very dangerous and ill informed providers tell my daughter things like that too.  What I did was have an appointment with the doctor before my daughter ever saw him/her.  We talked at length about what I was doing and what I needed the doctor for.  I made it clear that talking about food, exercise, etc. needed to support what I was doing or it was off limits.  When I found a doctor who agreed, I still went in for the first few appointments and never left the room. If I was asked to leave, I would send my daughter to the waiting room and ask the doctor what was so important that I couldn't be in the room.  If I didn't agree with what he/she had to say, appointment was over and we left.  We went through several doctors at first because my daughter was 21 when I started FBT for the first time (we did some food monitoring before but nothing like full FBT) and we had several docs who didn't agree with it.  I just pushed forward and didn't let it stop me.
alwaysvigilantCAN

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Reply with quote  #7 
If your GP is part of a family health team I would contact the executive director with your story.  I know you don't need the extra work of educating health professionals but unfortunately that is status quo.  NEDIC only has a listing of providers for you to contact. It is buyer beware.  I would contact ED centres in your area and explain your situation and they may be able to refer you to someone.  I have gone through a pediatrician and a GP and my current GP still has minimal knowledge of EDs and learns from me. sigh.
Good luck

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5 years in active recovery; With many, many days of full nutrition and closed loopholes, insight, life experiences and brain maturity we are slowly loosening the safety net
annabanana

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Reply with quote  #8 
Momupnorth, I'm in Newmarket, and my doc told me that we are outside of catchment area of Barrie's facility.  And the rest of the hospitals outside Toronto have 5-6 month wait list as well.  

I did start my research in the beginning of our journey with organizations like NEDIC but the answer always was that they don't have anyone near me (except my hospital, and we've been waiting almost 11 months).

As far as finding a director for my GP's group--my GP is a part of a group but for some reason the way things work there is as if she is a private doc--so if she's not available, I don't have an option of seeing other doctors, but just go into a walk-in clinic.

I think I may have to follow MJKZ's suit and interview doctors one by one, although if the law is as what momupnorth is describing, no doc would go against that....   I would hope that common sense would prevail against stupidity but then again.... 

I think these incidents are more discouraging than dealing with my girls at times, because in many ways I'm resigned to the fact that my girls will be suffering long term.  But these 'professionals' are supposed to be helping us.  Thankfully T2 recognizes that the doc doesn't know what she's talking about, even though she still hangs on to "I'm 17 so you can't make me..." whenever ED takes over.  

Thank you for sharing your experiences!

momupnorth

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Reply with quote  #9 
One thing I do know is that there are ways around catchment issues...and when docs are pushed a little, all of a sudden catchment is not as big an issue. For example, we are in Barrie, when looking for a bed for her as our local hospital does not have a true mental health unit for teens, she was sent to London, Ont.  I hope you are able to find someone who can help and knows what they are talking about.  I do agree that you may need to interview them and hope for the best with a doctor who will work with you and not against you.  Sadly, I feel they can be few and far between.  fingers crossed for you.
momupnorth

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Mom Up North
feast123

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Reply with quote  #10 
Catchment is quite strict in some scenarios and flexible in others. It's dictated by LHINs/MOH and individual doctors have extremely limited ability to circumvent the rules even if they don't agree with them. If your catchment area is determined not to have the appropriate service for you though - it sounds like this was the case in the scenario described above with the referral to London - then any catchment anywhere in the province with the appropriate service may potentially become an option, so in that sense there is flexibility. And there are layers, with catchments being larger for more specialized care (e.g., Belleville would refer to Kingston for almost all neonatalogy, but if heart surgery is required, both Belleville and Kingston would refer to Ottawa because Kingston doesn't have heart surgery). And similarly a child with an ED who requires an inpatient bed could end up anywhere in the province if their local centre is full.
BattyMatty_UK

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Reply with quote  #11 
Oh gosh, that is AWFUL!!! So DANGEROUS!!! It makes my blood boil that, in this day and age of so much eating disorder awareness (or at least more than there used to be...), that the VERY PROFESSION that is supposed to rush in and save our children are so dangerously ignorant. Over the past 8 years I've come across docs who haven't a clue about EDs and when I first came across this ignorance (when I first took my 15-year old son to see the doc when he began to develop AN) I was gobsmacked. It makes me so very, very angry. And all that stuff about being 'over anxious', 'too controlling' as a parent, blah blah... If I were you I'd take the complaint right to the top. xxxx
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Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
toothfairy

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Reply with quote  #12 
Hi annabanana,
Would you consider putting the idea of UCSD back on the table, given the current situation.

Best wishes

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
annabanana

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Reply with quote  #13 
I am somewhat calm now about it now, although I was quite angry like you BattyMatty. [smile]  T1 told me yesterday that when she was alone with the doctor, she emphasized how even though 'your MOM' feels like this, as a PROFESSIONAL, she feels that T1 was healthy enough in weight that she should really watch out what she's eating (no more potato chips) and be allowed to workout more than 3x a week.  I guess she used that phrase to tell her that she's too old for her to be plated by her 'mommy' as well.  GRRRRRRRR...

Toothfairy, my gut feeling is that we are passed the point where UCSD program be effective for us especially from what was described to me.   I just need to ask my hospital team what I need to do at this point, to help T1 move on to eat without the need to monitor her twin sister.  The girl's BMIs are 22 and 24 and they've been hovering around this for the past 5 months.  The therapists just want to talk about how they are feeling for the past 3 sessions--I feel I need to take some sort of an action but I have no direction.  Just going with intuition but still feel like I'm groping in the dark.  [frown]
BattyMatty_UK

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Reply with quote  #14 
Yeah, I had all that "your mom" stuff i.e. "Your mom thinks this, whereas we think that" kind of thing which, of course, stripped me of any clout I had in trying to get my son to eat and put on weight. For example, our treatment team told him at his lowest weight that "Medically you DO need to weigh more than you do now..." [so far, so good...] "...Probably not as much as your mom would like you to weigh but somewhere in between" [aaarrgghhh!!!] and that he could "settle at a weight he felt happy with" [aaarrgghhh aaarrgghhh!!] because "some people choose to settle at a lower level and stay there. After all, it's their choice, no-one can force them." [aaarrgghhh aaarrgghhh aaarrgghhh!!!!!!!]

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Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
eternalhope

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Reply with quote  #15 
So sorry this happened to you. I was hesitant to chime in because I know nothing about the Canadian system/providers. But ever since I read your thread, I am so mad at this doctor! We had a similar issue with our doctor. He would talk to my 11 year old d separately, which I didn't have a problem with until he undermined my authority infront of her. He told me infront of her that we shouldn't have taken her mobile phone away, as it had nothing to do with preventing her from eating. He used the word punitive. I explained that she lost it for disrespect and she was looking up calories online and not eating. The damage was done. My d started thinking everything we did was punitive (she couldn't distinguish the difference from the word "consequences") and she started keeping a scorecard of how we were "punishing" her for AN. She would say, "the doctor said you shouldn't do this as it has nothing to do with eating." He would also say infront of her "she'll eat when she's ready." Well she was never ready! This doomed our FBT efforts at home as she was getting mixed messages from what we were saying, following the FBT therapist, and what the doctor was saying. She ended up needing a higher level of care and is currently at a residential facility 1000 miles away. That said, she is currently doing really well. When she comes home, we will need a new doctor. I think you need a new doctor too.
annabanana

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Reply with quote  #16 
That sounds like what happened to us as well, Eternalhope!!! The doc told her that she was READY for more activity and independence and T1 has been using that to fight me with just about everything lately. She knows the doc is wrong but when she's in the ED moment, she goes on and on about what the doc said.

Before the appt i had told T1 that we will see what the doc will say and use that as a guideline to make the next move, as she had been insisting that she's gained enough weight and she can have more say in her recovery. I had no idea what kind of evil would be unleashed at the office.

T1's anxiety is through the roof now at the pending week of separation from her twin and she hasn't been sleeping well for the past several days so the entire family is suffering and at every meal, she's asking me to not give T2 less food than normal while she is gone, to monitor T2 like I normally do, to not let her move more than usual, etc etc.....this goes on for about an hour after we eat. She now says she's willing to take medication as long as she doesn't gain more weight from it but I need to find a doc first! AAAAAGGGGGGHHHHHHH
tina72

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Reply with quote  #17 
Hi anabanana,
I´m so sorry that this happened to you but it seems to happen too often. We had similar experiences and it takes soo much time to find a good and helpful doctor and a therapist who doesn´t crash your engagement and we should spend this time in helping our children! But we are standing alone, as always, fighting against useless people and useless therapies. Please, change this doctor! Such a few words can crash the progress of weeks! I would wish all these people could stand 24 hours in our shoes!
Tina72
eternalhope

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Reply with quote  #18 
If T1 is now willing to take medication for the anxiety, this a good sign. Hopefully you'll find a new doctor sooner than later. As you talk to doctors, you'll need to explain this history and that you have to be aligned. EDs will find the cracks and exploit them.
toothfairy

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Reply with quote  #19 
I hope you cind a doctor or psychiatrist that understands anorexia soon to prescribe meds for your D
__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
mjkz

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Reply with quote  #20 
Quote:
She now says she's willing to take medication as long as she doesn't gain more weight from it but I need to find a doc first! AAAAAGGGGGGHHHHHHH


That's encouraging given that she was told she didn't have too since she was 17 and didn't have to listen to mom anymore [biggrin]

I've been an adult for a long time.  You never get to stop listening to your mother!!!
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