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jusmar333

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Reply with quote  #1 
My 17yo daughter is a talented performer, driven and motivated to succeed but has always been thin and has no appetite.   We are not sure if she has anorexia and she denies that she has a problem. 

The whole family is in denial,  including daughter (there's nothing wrong with me) and Dad (she's just lazy and doesn't have a big appetite) and 21yo brother (she's just a brat), and my friends (she's fine, you were skinny as a kid and grew out of it).   My excuse was (She can't be anorexic because she 'says' she likes food, is confident and happy most of the time, doesn't diet, doesn't think she's fat and doesn't overexercise).

When she hadn't got her period by 16 and weighed 39kg (86 pounds), I persuaded myself she had to get to the magic 40kg .  I started feeding her up (no ED Assesment) and managed to get her to 49kg, with regular periods.   Thought my job was done.

She plans to go to university overseas next year (we live in NZ) so when I noticed she was losing weight again (44kg) I really got concerned.   Now we are seeing an ED therapist but D is angry, doesn't want the stigma, thinks she is fine, hostile to the therapist.    Every meal time is a battle and she eats so slowly and drags every meal out that I am taking breakfast away (3/4 eaten) and putting morning tea in front of her.  She has supervision at school for lunch but not morning tea.

Not having a conclusive assessment is making life very difficult.   At the moment it is Atypical Anorexia, because she doesn't display all the conditions.  I think maybe she has ARFID (thanks DR Google) because she is extremely picky and since we started FBT stage 1 the fussiness is increasing.  But no food fears or anxiety.

So D spends her whole therapy time in a hostile debate using these ED checklists to prove she does not have an ED.  Since I am now realising that she does have an ED (non specific) my D tells me the therapist is brainwashing me.   With no progress (except weight gain through supervision) I wonder if I would be better just keeping on with the FBT1 on my own?    She doesn't like the therapist but I read in other posts that this is not necessarily a bad thing as the therapist is tough on her.

Any advice as to whether FBT works without outside counsel?
Foodsupport_AUS

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Reply with quote  #2 
Welcome to the forum. Sorry you have had to find us here. It sounds like you have been at this for a while. Anosognosia is common with those who have and ED, your D is unable to see what you and clearly the therapist are able to see. In fact the more she is arguing that she doesn't have an ED the more it sounds as though she does.

You mention doing FBT on your own. Of course that would not be FBT but rather re-feeding at home, and many parents have managed to successfully do this. For some kids this is the only treatment their child needs but for other they do need the therapy and support. You are obviously on a very short time line, given your D is 17 and intends to travel overseas  for study. Many suggest 18 months in remission before doing such things as the risk of relapse is high, especially on first leaving home. Someone with no insight or acceptance of their illness is especially at high risk. 

Do you now have your husband on board with you? That is probably the most important job of the therapist, helping you and husband to get on the same page to fight D's illness together. 

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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.
cnkinnh

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Reply with quote  #3 
I would advise you, if possible, to find an expert in ARFID to consult with to see if that is what your daughter has. This is MUCH easier said than done. ARFID is still a very new diagnosis with a severe lack of experts or real, evidence based information available.

My D was originally diagnosed with anorexia, and we did FBT accordingly for a year and a half. She gained the necessary weight but her mental state did not improve - in fact it got worse, until we finally took her to UCSD for their weeklong intensive program and they changed her diagnosis from AN to ARFID. Until then, we were treating her as 'atypical AN'. She has difficulty eating enough, but has no body image issues, no obsessive dieting, or even conscious resticting of food. Also no food fears or anxiety other than general fussy eating.

In our case she did get to the point where she needed to be hospitalized so she knows the consequences if she doesn't eat. It is still hard and she can't eat enough on her own without supervision, but she doesn't deny having a problem.

It is important to know whether it is AN vs ARFID. They are different disorders with different causes and different treatments. This is something I did not realize for those 18 months - I thought it didn't matter; she needed to eat either way. And obviously this is true, but the way eating is approached can be very different between the two.

Best of luck to you.

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14yo D, hospitalized July 2015 after losing 20lbs, followed by a horrible week in an ED clinic. No obsessive dieting or body image issues, yet misdiagnosed with RAN until UCSD weeklong treatment program Jan 2017 updated diagnosis to ARFID. Many mistakes made along the way due to not understanding the difference between the two illnesses.
Sotired

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Reply with quote  #4 
Kia ora jusmar,
One of the things you can do to get weight back up is to order fortisip from the chemist.this is a small drink that gives an extra 300kcal with each bottle.it would be better if you had a diagnosis because then the cost might be covered (but that is only a 'might be' covered.)
Someone I know has a d with ARFID which I think does require diagnosis at marinoto by a pysch.the fortisip wasnt covered so she paid the $40 a month for her d to have this drink.i would start talking other options with your d-unlike the states,it is seldom actually necessary to study away from home as Auckland university covers most things and what it doesn't ,the institutes of technology-AUT and MIT usually do.
At 44kg and dropping, your d may well find she is not accepted to any course because of liability.our d deals with gastroparesis after severe onset anorexia and we had to prove that she was well enough and we had enough medical backup for her to do her course.our d has weekly blood tests and nurses checks to keep her safe.if we were still dealing with anorexia she couldn't have done the course she's on as she simply wouldn't eat or drink enough.
With arfid, I think she would still need to stay home for at least a year-she has to get weight on and keep it on.the last thing you want is for her to be headachy,unable to focus, sleepy all the time-none of those things are going to set her up for success in any course that she does.
I don't think you mentioned height?because that affects how much she needs to weigh too.i am currently refeeding my middle d who has dropped 8kg over summer.like smallboy who dropped 6kg in 6 months the weight decrease was gradual, but as I said to her ,it doesn't matter why or how it happened-only that it has and requires immediate treatment.for her this means food.lots and lots of food.i do a high fat milkshake for both her and smallboy in the afternoon-three scoops icecream ,quarter cup full cream,the rest silvertop fullcream milk.small boy regained all his weight back and she is slowly starting to as well.
You are looking for 'bang for your buck'.that means high fat foods-my kids eat stuff that would have most dieticians crying.full fat drinks,chocolate,burgers-as well as fruit and veges.lots of bread,pizza bases with full fat cheese and salami.even with arfid,you have to always choose full fat options.
No vegan ideas either which you may find suddenly appears as whichever illness your d has,it still gets treated with food.
Don't listen to any friends or family who are unhelpful.for now,ignore them-they either get on board,or they get out of the way.it sounds so brutal-but so is this illness and if they can't be helpful,then they need to stay out of it.
With middle d-she does get lazy and can't be bothered-that was fine when she weighed 63,it isn't fine now, so I make her lunches every day and check on her when she is with friends or her boyfriend.i have made a weigh in appointment for her.she accepts all of this as does smallboy.thats the difference, I found between them and their sister.
She fought me on every bite,every drink,she would exercise excessively.they DONT.they accept that I will allow for fussy, but not eating and not eating enough is simply not an option for them.they also know that I would have no hesitation to hospitalise if I could not get weight on at home.
I am in Auckland so I do understand the issues of finding effective diagnosis and treatment.you can take your d to marinoto,and if weight is not going on I would consider a short stay in hospital to get weight gain started.

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jusmar333

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Reply with quote  #5 
Hi, thanks all who have posted.

FoodsupportOZ thanks for the link to anosognosia - this is very helpful.   I also care for my bi-polar sister, and until my mother until her death from early onset alzheimers.  Both were/are very difficult to handle due to this anosognosis - I sense there may be a genetic thread here :-(     I think I do need to continue with the full treatment - if only to sleep at night knowing I am doing everything I possibly can.  My husband thinks we could cause anorexia through the treatment, but I am going to have to go with the experts on this one.  He is very support on the eating babysitting mode and when  I showed him the anosognosia info I think he may be realising we have a bigger problem on hand.  I think delaying her study plans may have to be an option but with the current denial I have no idea how to approach this with her.   Is there a cure for anosognosia or will she alway refuse to accept that she has an ED.

Hi cnkinnh

Thanks for that advice, you saying "She has difficulty eating enough, but has no body image issues, no obsessive dieting, or even conscious resticting of food. Also no food fears or anxiety other than general fussy eating"  is exactly like my D, she is happy and confident and so far have a great relationship.  I am not alone or crazy and I'll keep searching until we find the right treatment!

Kia Ora Sotired,  wow you have your hands full, you are amazing to have so much courage and strength!  Great advice re the friends thing,  I am starting to any avoid social situations with all this obsession with my daughters health - need to leave the problem at home for a bit each week and take some time for myself :-)  D is 163cm btw  (5ft6)






workinprogress

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Reply with quote  #6 
jusmar333, other than the age I could've written almost your exact post last summer. My heart goes out to you and your daughter because that is an extremely hard place to be. Recognizing that every person and every family is different and what works for one may not make work for another, I'll share what has worked so far for us. I agree completely with what Foodsupport wrote--especially the importance of both parents working together to fight this.

The short answer to your question about doing FBT with no outside counsel is no, that would not have worked for us. One of my main reasons is that (especially at the beginning) it's too hard to know what to do on our own--whether or not what we're doing is right or wrong, helpful or harmful--no matter how many books or websites we read. And that uncertainty seems to get in the way of recovery. For my husband and me, the situation was so befuddling, so bizarre. This was not our daughter and (though we tried everything we could think of, always coming from a place of love for her) we had no idea how to deal with this person. As I fought against the anorexia, it came up with new and crafty ways to fight back. With no outside counsel, I would've had no way of knowing how to proceed, how to keep fighting. And without outside counsel, I don't know if I would've had the strength (mental or physical) to keep fighting.

Do you know about the UCSD (University of California at San Diego) Intensive Family Treatment Program? While we have no personal experience with this program, we've read about it in several places including here, and it always comes highly recommended for learning Family Based Therapy. It's a short (five days, I think) but apparently very helpful and effective program. Here's the web address:

eatingdisorders.ucsd.edu/treatment/oneweek-intensive-treatment-programs.html

Here's the long(er) answer: Our daughter (also driven, motivated, and talented) just turned 16 and is now six months into recovery--still early on the road but doing well. Your description of your daughter's perception of the situation is pretty much an exact description of our daughter's just over six months ago. So frightening and so difficult to deal with. She was also diagnosed (finally after a little more than a year of being followed periodically by a dietitian and therapist neither of whom specialized in ED) with an "atypical anorexia". No one (including her pediatrician as well as the dietitian and therapist) was sure until then if her weight issues were actually due to anorexia or just an inability to keep up with an extremely active lifestyle. I now think that the anorexia absolutely loved this period of our uncertainty as it was able to get a stronger hold on her. (Hindsight truly is 20/20.) I am so thankful for the day we were finally able to start her treatment in earnest. Between not knowing what was really going on and then trying to find an available doctor, therapist, and dietitian who specialize in ED, it took us a good three months (over the summer) to put this team together and get her started on what has ultimately worked for her so far. As hard as her recovery has been on the family, that three months was infinitely more difficult. I can't imagine doing any of it with no outside counsel. At the very least the outside counsel helped to quell the uncertainty that the ED seemed to thrive in.

During that three months (over the summer) we had started what I have since been told is sort of a modified Maudlsey approach. I was with her almost all of the time, and she was only allowed to continue with her activities if she ate a certain amount each day. Every bite of every meal was a huge struggle. During this time, I was in touch with her original dietitian (who did not specialize in ED) and a wellness coach who had a career that our daughter aspires to and who also went through and recovered from anorexia as a teenager. As minimal as it was, this outside counsel was invaluable for my sanity. Among other things, it served to remind me that this was not my daughter but was the eating disorder and to continue to fight against it--that it was no one's fault, it is a disease, and it IS treatable. As "common sense" as that may sound, as her support system, I needed to hear that and hear it frequently. Anyone supporting someone going through ED also needs support. (They taught me that, too.)

Once we began with the ED-specific treatment team end-August, she was thankfully able to avoid hospital admission, but it was a strong possibility for a few weeks with questionable vital signs and low weight. The medical doctor (pediatrician) was a very important part of treatment at this time. Very necessary in beginning recovery. I think it may have helped her start to realize the seriousness of her situation. We continued our version of FBT with frequent outpatient support (weekly MD, therapist, and dietitian visits), but she could not get her weight past about 83 lbs for about three weeks despite her best efforts, so my husband and I actually enrolled her in a partial hospitalization program. We knew after one day, however, that this was not a good fit for her recovery. Again, we were trying everything we could to find what worked for her. After going back to our outpatient team, with many bumps and struggles along the way (a lot of two steps forward with one (sometimes two or even three) steps back), our daughter is finally at a truly stable place, back to her normal activity, and continuing recovery in a way that is working for her but always with the support of that team. Feeling heard and listened to has been a very important part of her recovery. My husband and I are constantly reminding each other to stay sensitive to this and are thankful that her treatment team has as well.

We have found that at this more stable point in recovery the dietitian is the most helpful part of the team as she monitors weight and also provides nutritional as well as emotional support. MD is now monthly, and therapist every other week, but weekly dietitian visits continue for now. Since we began working with the ED-specific treatment team, it has been a rough road but so far successful. Her at-times-violent refusal to see the reality of her illness has, as her weight increases over time (with lots of family and treatment-team support), given way to the realization that there is a problem and, finally, that wellness is what she really wants. (She just remarked today that recovery is awful, but it's the only way to wellness, which she now thinks is wonderful.)

All of this to say that it's hard to believe (was for me anyway), but with support recovery is possible. As our non-ED-specific dietitian recently said, we tried every key in the lock and finally found the one that worked for her. It's definitely not one-size-fits-all, and it is a difficult search, but I know you will find the one that fits for your daughter.

One last thing (I promise). As our daughter approaches 18, if she does have a relapse, my husband and I have agreed (with our daughter's knowledge) that we will not hesitate to enroll in the UCSD Intensive Family Treatment Program. This has been such a long process already, and just like Foodsupport pointed out, as our daughter approaches adulthood the timeline gets much shorter.

You are awesome to be here for your daughter to help her through this. Wishing you love and light.
workinprogress

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Reply with quote  #7 
Sorry to be redundant. I was typing while others were making such wonderful posts. I obviously second what they say. [smile]
jusmar333

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Reply with quote  #8 
Thanks workingprogress,  I will take your advice on board.  I have to learn to externalise the ED rather than thinking it is D talking.   Doesn't help that she is a talented actress and can act convincingly normal :-)

We live in NZ so options here are different but I'm sure I will find my way through.   I definitely got thrown with the atypical scenario, any hope that the AN diagnosis was incorrect was hung to.

It sounds like your Ds recovery has been tough but reasonably quick compared to some of the people in this forum.  Hoping we can make the same progress.   Not going well this week, lots of gagging and involuntary vomiting at the dinner table.   An hour to get a minuscule amount down her, just to have it brought back up argh!

I am taking her to a hypnotherapist today, grasping at straws but anything worth a shot.  I am going to start a new thread to see if anyone has had any success in this way so if you have an opinion please look for the thread.

Thanks again


bccka5

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Reply with quote  #9 
My D was diagnosed with anorexia at the age of 12 and had none of the typical symptoms associated with it such as exercise compulsion, calorie counting, or body image issues. We had many reasons for delaying any treatment because of this. She was always tall and thin (like I was when I was young), wasn't a picky eater at all, never worked out a day in her life. It was determined that she had been malnourished for over 6 years.

For us, we saw the major decline happen in the summer right before the diagnosis when she started becoming a very picky eater. It was slow and subtle. She started having fears of food and it just got worse and worse until she thought that everything was poison, rotten, expired, etc. So you can only imagine how we felt so stupid not knowing an ED had been going on for so long. She didn't know it either. 

Once we started feeding her, she definitely became more resistant because it was painful mental and physically. However, as we started to get the weight back on her, the OCD thoughts started to subside. Her brain was healing.

The bottom line for our D's diagnosis is that she couldn't maintain a normal weight. We also found out that she has no hunger and fullness cues (and still hasn't regained them 3 years later). 

So even though your D doesn't have food fears or other typical presentations doesn't mean it isn't serious. Which I'm sure you know. Perhaps another month of starvation would bring on those fears and you would have a worse time undoing the damage. No need to wait for that to happen. It took us 6 years until we knew better, please trust your gut and fight ED now regardless of the specifics of the diagnosis. That can only happen with food. 

The fact that she's arguing and fussing seams like a typical reaction that we've all had with refeeding our kiddos. They don't like it one bit.  So to me, and my most humble opinion, it sounds like you're right where you need to be. The problem though is that it makes us question our own sanity and direction. Stay strong and Persevere!





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Daughter diagnosed with anorexia at 12 in 2013 without having any image issues/concerns about calories or exercise. Hospitalized - 3 days. FBT at home along with outpatient therapy - 16 weeks. Recovered/weight restored - 3 years. Still has no hunger signs.
PuddleduckNZ

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Reply with quote  #10 
Atypical Anorexia is more Typical than it sounds!

Sorry you find yourself here, I am in NZ too and my Son was very difficult to dx, but at the end of the day if they aren't eating normally and are underweight, its ED.

Anosognosia is a big thing in ED.

Have you been through your local DHB?

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Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 12.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
cnkinnh

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Reply with quote  #11 
Quote:
Originally Posted by PuddleduckNZ


...at the end of the day if they aren't eating normally and are underweight, its ED.



Funny you should say this because I have an ARFID "expert" on another forum who is telling me that since my D doesn't have any discernible anxiety around eating, her diagnosis should be Sensory Processing Disorder, not ARFID.

I don't believe him. Just because she doesn't fit the presentation of ARFID that he specializes in, doesn't mean it's not ARFID. There is nothing in the diagnostic criteria that specifies anxiety needs to be present.

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14yo D, hospitalized July 2015 after losing 20lbs, followed by a horrible week in an ED clinic. No obsessive dieting or body image issues, yet misdiagnosed with RAN until UCSD weeklong treatment program Jan 2017 updated diagnosis to ARFID. Many mistakes made along the way due to not understanding the difference between the two illnesses.
mjkz

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Reply with quote  #12 
Quote:
I don't believe him. Just because she doesn't fit the presentation of ARFID that he specializes in, doesn't mean it's not ARFID. There is nothing in the diagnostic criteria that specifies anxiety needs to be present.


I don't know that the exact diagnosis really is important.  Go with your gut and find what works.  Each kid is different and you will find things that work for you that never worked for me.  That is why this forum is so unique and such a great source of support.  You can get suggestions that you never thought of and some will work while some don't.  Run with what works and don't stress over the actual label.

We all know at the end of the day no matter what the diagnosis, food is medicine.
Morgana

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Reply with quote  #13 
My d was originally dx with atypical an, however we later found out (from information in her search history) that she was thoroughly obsessed with weight, fat, calories etc but never ever expressed it out loud. Even after we knew an all the professionals knew of her search history she has never vocalised any of the usual AN thoughts. She hid it all so well apart from the not eating and exercise compulsion!

Even in ip staff would say to me that they couldn't believe she had typical AN and I had to remind them I knew without a doubt that she did. 

AS mjkz says, it doesn't matter really because the medicine is the same.

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15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
cnkinnh

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Reply with quote  #14 
Quote:
Originally Posted by Morgana


AS mjkz says, it doesn't matter really because the medicine is the same.


Not necessarily. In both cases obviously they need to eat, but there are some important differences in the way this should be approached. For a year and a half, we treated my ARFID D as if she had AN and I believe some lasting damage has been done. I am in the middle of writing up a more detailed post on this and I will share it when ready.

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14yo D, hospitalized July 2015 after losing 20lbs, followed by a horrible week in an ED clinic. No obsessive dieting or body image issues, yet misdiagnosed with RAN until UCSD weeklong treatment program Jan 2017 updated diagnosis to ARFID. Many mistakes made along the way due to not understanding the difference between the two illnesses.
mjkz

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Reply with quote  #15 
Quote:
Not necessarily. In both cases obviously they need to eat, but there are some important differences in the way this should be approached.


Does not change the fact that food is medicine no matter how you approach it and they all have to eat no matter what the diagnosis.  I hope you do write up a detailed post on ARFID and post it.  I have not dealt with it but I know there is not a lot of good information out there on how to approach it and what to do differently than typical AN.  I have seen some of the same approaches as treating AN used in ARFID with good results.  At the end of the day the food has to go in either orally or by tube if need be.

cnkinnh did you ever go to treatment?  Did you do the UCSD program?  If I missed it, sorry. I tried to look back but this new format makes it much harder for me at the moment to get back to older posts and see what you decided.
cnkinnh

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Reply with quote  #16 
Quote:
Originally Posted by mjkz


cnkinnh did you ever go to treatment?  Did you do the UCSD program?  If I missed it, sorry. I tried to look back but this new format makes it much harder for me at the moment to get back to older posts and see what you decided.


Yes, we did IFT at USCD in late January, which is when D's diagnosis was changed to ARFID, and when we got guidance on how to handle things differently for her.

I will make a concerted effort to get things written up this weekend. [smile]

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14yo D, hospitalized July 2015 after losing 20lbs, followed by a horrible week in an ED clinic. No obsessive dieting or body image issues, yet misdiagnosed with RAN until UCSD weeklong treatment program Jan 2017 updated diagnosis to ARFID. Many mistakes made along the way due to not understanding the difference between the two illnesses.
mjkz

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Reply with quote  #17 
Sounds great.  I will look forward to reading it.
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