F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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casc
Hi, I'm Cassie and I live in New Zealand. I recently came across someone who had a daughter with anorexia who used this forum and sent me a link to it. I have had a little read and am so happy to finally come across a page with people all having the same struggles. Our story:

My daughter has just turned 17 and was diagnosed 5 months ago with anorexia. She has always been small and under the hospital for tummy pains from age 9. Her anorexia was so subtle that it got missed by paediatricians and psychologists and was finally diagnosed by a psychiatrist. She has suffered silently since she was 14. We are using Maudsley therapy and she has gained around 4 kgs but not without the battles. I'm still struggling to get her to complete ALL her meals and don't feel that I have power over anorexia yet as she's gotten away with too much. She has been out of school since July and does correspondence through medical school. I struggle most with the time needed for feeding when anorexia is strong as I also have 3 younger daughters the youngest 2 only 2 and 3.5 years and am yet to find some sort of community type support that may be able to come help a few days a week. So as a newbie here what information did you find most valuable (still trying to navigate my way through the website) and anything else that you may think would be useful or helpful. Or tips on using this site?
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sahmmy
Welcome here.
So sorry to hear your d's onset was so gradual and missed by medical professionals. My d's was too. It has been so frustrating. I hope someday we will have more information to catch this beast sooner. There is nothing we can do the change the past;it won't help to to worry too much about it, but I have to admit that sometimes I still grieve about it. Our energy is more productive if we can focus on today and tomorrow.

One the most helpful things on this site for me was finding the Search key. If you are mulling over a topic such as 'vegetarian', you can do a search for that key work and see everything people have said with that word.

Books I have found helpful: Give Food a Chance by O'Toole, Eating with Your Anorexic by Collins, Decoding Anorexia by Arnold, Help Your Teenager Beat an Eating Disorder by Locke & LaGrange, Skills-based Caring for a Loved-one with an Eating Disorder by Treasure, Anorexia and Other Eating Disorders by Musby.
d=18, R-AN, Generalized Anxiety Disorder. Refed at home with information gathered from this forum and lots of books. Relapsed. Refed. Relapsed. Refed. 17 sessions with an excellent individual therapist. 19 sessions with unhelpful dietician. 3 sessions of DBT (didn't like it). Psychiatrist available if needed. Prozac - fail. Lexapro - fail. 5HTP - fail. Clorazepam/Klonopin = major improvement, only used when necessary. Genomind SLC6A4 short/short - not able to process SSRI's.
d=15, lost 14 lbs in 8 months, Ped [nono]diagnosed as a crystal on a hair in the ear canal
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Torie
Hi Cassie - So sorry you needed to join us here.

The main thing this forum helped me understand was that the only thing that really matters is weight restoration.  This vile illness is so counter-intuitive that I had led myself into all sorts of incorrect thinking about how important this or that was.  So it took me a while to develop the laser focus I needed on full nutrition, full supervision (read: watching my d like a hawk and requiring her to stay with me for an hour after each meal before going to restroom or anywhere else), calorie-dense meals, etc.

The biggest single help to me was this little video by forum member Eva Musby:



Please feel free to ask all the questions you like. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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casc
Thank you both for your reply. It's a real battle at the moment. Lots of refusing to eat meals and I'm starting to get really frustrated. Doesn't seem to matter if I take stuff off her she still refuses to eat. I'm not sure how far to take it as she has heaps of guitars which I'm tempted to remove and she gets them back once meals are completed. I'm losing patience as its a battle at every meal and I feel completely out of control like anorexia still has the power
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Dobbin
Dear Casc, it must be so hard having younger ones as well to deal with. For me, Eva Musby's book was my life saver, it set me on the road to properly helping my daughter. The others are also essential reading I'm afraid but for me, I'd start with Eva Musby's. It takes time to get the hang of it so be kind to yourself, you are not failing but gaining experience. For us, it took three months to get things working, in which time our D lost a further 12 kg, she was diagnosed very early, before much weight loss which was really lucky given how long it took us to work out what we were doing. So do not despair and do not give up, be consistent, persistent and insistence and fake confidence when you don't feel it. Keep reading here. And my final bit of advise would be that if you can afford it and arrange it, get a mother's help. I dont think it's possible to bring someone in to do the refeeding for you, but there is help for hire out there which can make your life more manageable. I paid a friend for several months to shop and prepare dinner for me, maybe you could use someone to care for your younger ones at dinner time? Perhaps a teenage babysitter who would bath them and get them ready for bed so you could have dinner with your eldest once the young ones are in bed?
Best wishes
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Torie
casc wrote:
It's a real battle at the moment. Lots of refusing to eat meals and I'm starting to get really frustrated. Doesn't seem to matter if I take stuff off her she still refuses to eat.


If you don't mind giving us some specifics about what happens during these refusals, we might be able to make better suggestions. For example, does she eat some and then stop, or does she flat out refuse the whole meal?  What happens next?  Does she leave the table and if so, do you follow her with the plate of food?

I agree with Dobbin that it would be ideal if you could beg, hire or borrow some help with the little ones so that you can focus on your Ed-D, and the little ones are spared the mealtime scenes.  

Ugh. I hate this vile illness. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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casc
Sometimes she will leave half a meal. She will sit at the table for an hour plus then refuse to eat anymore and leave the table, often she will put plate on the bench if she's gotten really upset then she'll leave it at the table. Other times like for snacks she will not even come out of room to eat it or she'll eat most of it leaving a slice of orange it a few grapes etc. Last night she was meant to have desert but just went to bed and to sleep. Sometimes I sit at the table with her and distract her from eating, other times I leave her at the table and sit in lounge where I can still see her but am not in her face and just question how much she has left, sometimes I'll take Internet and laptop off her and she gets it back when she's finished. Other times I just give up as I'm gonna loss my cool. Sometimes especially in the morning if I have the 2 little ones to drop off at kindy and daycare she will drag out breakfast until I need to walk out the door.
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casc
I've tried finding help with the littlies but haven't had any luck yet. Even someone to help with a bit of housework would be good. Things with hubby (her step dad) isn't very good either he just works pretty much 6 days and does very minimal things to help. I feel like I'm gonna fall to pieces cause the load on me is just too heavy
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Sotired
Hi casc,
Kia ora from an NZer.if you are in a major city centre you might be able to get more help.we do have a residential centre in the north and the South Island.in terms of a cleaner-I asked around at school-there's usually someone looking for a cleaning job.
If you are in auckland, a couple of us are meeting at a garden centre next weekend for a catch-up-we are between 2-3 years in and can possibly help you with thoughts and ideas of where to go from here.
It is very easy to get overwhelmed, particularly with the NZ attitude of "she'll be right mate".people seem to refuse to accept anorexia doesn't work like that and it can be very isolating.there is also a support group called edanz- stayingwithit, a mod here, can give you more info on it ,or you can look at their web page.they have meetings in other ares too, not just auckland.
If you have the option of putting your littlies in daycare a few days a week, that will help you too.there are government subsidies available.
Hope this helps
Sotired42
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casc
Hi Sotired,

My littlies go to kindy and daycare already which definitely helps with having time for just Shania. But I still seem to not be able to get on top of housework or anything else. I live in Tauranga and not sure there is any support here for this sort of thing. I am looking into at the moment.
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Sotired
There should be a branch of REDS -regional eating disorder service in Tauranga.i do know that Tauranga hospital will help withfbt-or at least they did a year ago as we knew a couple of families from Tauranga and their children did outpatient lunches at the hospital.is that still in place?if it is, beg the hospital to do that.if you are lucky, you might still be able to get her there as a child, not classified as an adult.adult treatment is harder.
There is residential treatment up in Auckland- it used to be called thrive but has a Maori name now-hopefully if you type in thrive it might come up with the name, or you could ask your team.thats just a possibility.
If you don't want to put a notice up for a cleaner, hire a company to come in and do the heavy cleaning.you can do that fortnightly.if you advertise on neighbourly, you could find one too.
I made friends with a few other mums in my situation and it helped with feeling less alone.strengthening families is something that might help you if they have a branch in your area.they come to your house to brainstorm ideas.
A supportive GP is a must-someone who is t afraid to put hospital on the table if needed-as it so often is.i think it is rare to get through anorexia without hospital- and I think it can be an effective tool in the toolbox if your ds weight is not moving and she has learned all the anorexic tricks in the invisible handbook that they get from visiting pro ana sites-a real risk for our older teens.
Watch out for food hiding-waistbands, pockets,fed to the dog...
Watch out for waterloading- where they go up and down by a kilo week after week,due to drinking water before weigh in, then not drinking the following week and so on.we went through that for months.and food hiding.
My ds anorexia was very sweeet and nice til we found the holes and plugged them-only then did the self harm and terrible behaviour come out.thats when we knew things were working to some degree.
If your d says there is nothing you can do, be aware that in NZ you can put them under the mental health act if she refuses treatment.
The journey can be vicious so you need to know what tools are available.
Good luck,
Sotired42
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casc
Thank you for your help. We are 5kgs off from hospitalization so to be honest I think we have avoided it. She was 26% underweight when we started with CAMHS and she was very very close to hospitalization and spent a few hours in ED due to unstable obs but she has gained since and although her weight fluctuates every week it generally isn't anymore than a few hundred gram loss or gain. CAMHS have not informed me of any community type support or avenues like that or any support groups that are around and I've had no luck finding anything. I will look into all your suggestions and I really appreciate them. I'm not aware of any help from the hospital and they will not hospitalised unless she becomes medically unstable
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casc
Forgot to add I've got an excellent Dr so might be time to go visit him again
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Sotired
Sorry, I'm just trying to get clarification here-so any weight your d has gained, might be lost the following week and then 'regained' the next week?this advice is only for that particular situation-but that is absolutely classic waterloading.it is also, ironically what might be keeping her out of hospital as with waterloading they stay hydrated so their obs look very stable.
If you mean you are having consistent weight gain of a few hundred grams each week, that's a different kettle of fish.
When the doctor takes your ds obs, do make sure they take an orthostatic heart rate.this is when it is taken first lying down and then straight after, standing up.a significant difference in heart rate means that your d is most likely fainting (and they can hide that really well).tell your doc that orthostatic heart rate and blood tests need to be done.blood test that is essential is potassium as that will give indications of whether your d is purging(vomiting).low potassium means purging.
My d was not significantly underweight for admission, she weighed nearly 47kg.they admitted her because once I started finding out all the tricks anorexia had used-then the gloves came off and we got to see what anorexia really looked like.
For us, we could sit at the table til the cows came home-if d decided (anorexia decided) she wasn't eating, nothing shifted that.for us putting d in the child and family unit was the path to starting on treatment that worked.
If you are making no progress (and you are running out of time here, because your d is already 17 and will age out of this soon) then ask if your d can be transferred to aucklands CFU.there, if she doesn't eat, she will be transferred up to the ward.they don't accept after 18 so it's only an option for a little while longer.
It sounds like your team has not given you access to everything that is available and that is on them-but do some research for criteria for admission to starship.you may not have to use it- but I found when looking at the criteria, my d met 5-6 of them-that's a lot.obviously auckland is not ideal, but there are slightly more resources here and a ronald MacDonald house for you and the other children to stay in if necessary.
I'm sorry if I'm bombarding you with information, but you have a really small window and it sounds to me like your team might be waiting for your d to just 'age out' of the system.
Re the meals at the hospital-I was obviously unclear-I meant that your d is doing FBT and that if you contact Tauranga hospital and explain your situation they might let you do lunch with your d there -as an outpatient but with the inpatient teens.this might assist in you having back up for feeding.
Hope this helps,
Sotired42
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casc
Hi Sotired,

They don't check her bp and hr now as she is about 4 kgs off her goal weight. She doesn't fluid load as we have lunch just before our apt. She has a major vomiting phobia so wouldn't fluid load as it'd make her feel sick. I'll look into the options you said though and will hassle camhs about other support options. So when she turns 18 they'll just discharge us?
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Sotired
If you are having lunch directly before her being weighed you are skewing her weight result.sorry, but it's true.so that means you don't actually know what she weighs.everyone ,almost without exception (myself included for at least four months post diagnosis) thinks and says that their child couldn't possibly water load ,hide food or purge.
I learned the hard way that they can and they do.it isn't their fault, it's part of the illness but all the rules that previously applied to what your child did and didn't do pre illness don't exist anymore.my child said all of that to me and more.she swore on my mothers grave that she was telling the truth.she wasn't and when I found the three bags of hidden food she swore she would never do that again-but she did.in the midst of this illness you can't trust a word they say-only what they do .
Your d will be discharged to adult services the day she turns 18.they will start prepping you for this a month before.adult services in NZ do not do FBT to my knowledge.i may be wrong on this.
Your ds heart rate and blood pressure are taken at normal GP appointments-why on earth, with something as serious as anorexia,are your team not performing basic checks???sorry, not cross at you , but that is just negligence on their part.if they aren't doing basic checks, I'm guessing they aren't doing any blood work either?
God, I feel like I'm being the angel of doom here, but this is ridiculous care you are getting.also, don't let your team try to brainwash you against hospital-in NZ that attitude is chronic and very unhelpful.hospital can and often is necessary, sometimes to get proper weight on and then for FBT to continue at home.hospital is just another tool in the toolbox.and once they age out, it's just general hospital where the attitude by staff is....less than awesome.
So-reinstate heart and blood pressure checks asap.ask for bloods to be done weekly-they give you a form for this-so you can check on her potassium levels.dont believe any 'phobia'-anorexia only has one,and that is eating.be aware that your window closes soon and if your team say it doesn't-get it in writing.lunch is after weigh in, not before.(unless it is several hours before obviously).
No trips to the toilet right before weigh in-they drink water to trick the scale.the first two years of my ds illness were a lesson upon a lesson on what anorexia could make my beautiful daughter do under its influence.
Good luck,
Sotired42
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casc
She has lunch every week right before our appointment and the same lunch every week so it'd still be consistent as she is weighed the same time every time. Our appointment is 1.30pm so it's just the way it has to be. She was hiding food as I found it but I'm 100% confident she isn't purging as she has a fear of vomiting and definitely not water or fluid loading however she could be putting stuff in her pockets or undies etc but her pants are still to tight and her weight at the moment is fluctuating around 200gms as the last few weeks have been pretty rough. She has gained 5 kgs since we started with camhs 5 months ago so I guess they don't see her in the real danger zone and other than the last few weeks she was eating every meal and weight gains were great. She is still eating just not completing every meal so she's probably still eating around 2000 calories a day. She has a genuine vomiting phobia that has been around since she was a young child. I don't want to sound naive as I most definitely am not I know anorexia has no limits and will do anything and everything but I am extremely confident that there is specific behaviours that she is not doing. I'm not sure about exercise, she could possibly be getting up in the night and doing it but her old pants are definitely all to tight indicating she isn't losing weight
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casc
I'm in the process of trying to change our camhs lady as we had a reliever whilst our usual one was away and the family and my daughter all responded to her better but not sure whether we will be able to swap but feel she will give us more options and help.
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stayingwithit
Hi Cassie, I'm in Auckland & checking my contacts to see if there is someone local to you I can put you in touch with. This is such an exhausting & isolating illness for carers so peer support can make a big difference to how you feel. Even though it's not face to face contact, this forum is a wonderful way to get ideas, share & learn. So keep in touch and don't hesitate to ask any questions... the more you learn about your d's illness the stronger you will be in your support of her as she recovers. There are some great resources which I could send you links to by email if you like?
It sounds as though you have made & are still making positive progress with refeeding your d. Well done with the 5kgs!
I think most of us will have experienced periods when things seem to go more smoothly and then unexpectedly get worse again. It is really common to feel as though you've taken a step forward & then two steps back! But keep your sights firmly set on the goal - FULL recovery for your d. Her resistance can be disheartening & frightening, but be reassured that it is "normal" & remain calm, confident & consistent.
Can you find a way of removing all choice? Creating an environment where not eating is not an option. Food is her medicine & every dose must be taken in the prescribed amount. Your idea of using the guitars sounds like it could be helpful...
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casc
Thank you. Yes it certainly feels like 1 step forward and several back and I feel very isolated from all my friends and family as none of them really understand what it's like. Yes links would be great thank you my email is casc@xtra.co.nz
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Sotired
No worries casc, I've just been at this for a wee while so I always try to give a heads up what could be happening when weight goes on but then starts only fluctuating by a little bit but stops moving forward.
Even a relieving therapist should be getting you checked out by the clinic doctor-we usually saw the clinic doc at reds either before or after therapy appointment.you said you can get this done with your GP though, so either way it's a good idea.
Re exercise-one thing that my d did in the depths of illness was she would set alarms on her phone to go off throughout the night so she could exercise.she also would make thirty un needed trips up and down our stairs to 'just get this' 'oops-this too'.if I left her on her own for any length of time she would fit in starjumps or sit ups or running on the spot.she exercised in the shower.
Some stuff I only found by reading a journal she was keeping.i couldn't allow her privacy because her illness made her misuse it.
Congrats on the fivekg weight gain and hopefully with the right support from camhs weight restoration will not be far away.i am just very aware that a)they have much more access to pro ana sites when they are in their late teens and b)they age out of one model of treatment and get put into another at 18.
What I'm trying to do is just give you some ideas as to why things might be not moving forward.
I hope that stayingwithit can give you more on the ground contacts to help.
I can only suggest re meal support that you try the hospital-I do know one family in Tauranga who took their d in to hospital to assist them with lunch.they also got access to CFU in Auckland which then gave their d access to ward 25 at starship.they practice FBT there.
I'm of the 'try this,ok that didn't work,try this ' mindset.so please don't be upset if I suggest something you are convinced your d isn't doing.sometimes what we say here helps, sometimes it doesn't fit and that's ok too-we all come at this from different perspectives and different situations.its all just ideas at the end of the day, you are in charge of your daughters treatment.
Good luck,
Sotired42
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casc
Thank you sotired I really appreciate your help. When she was at her lowest weight I fought to try and get her hospitalised and they wouldn't put her in. Her bp was high and erratic and hr low but when I got to Ed both had stabilised and her bloods were fine so they discharged us. I was so upset. They are so staunch here on not going into hospital unless you absolutely have to. It'd be nice for her to go there just to give us a break but that doesn't appear to be an option and not something they'll consider. I will check her alarms in her phone when I get it next didn't think to check that last time I searched it. Those pro Ana sites are scary and I do think at some stage early on she was involved with something like that not sure whether she still is, I'd like to think not but yah just never know ah. We don't see any Dr's now. When her weight was extremely low she was getting bps and hr done at our weekly Apts but no blood work other than when I took her into ed. They must run things quite different in Auckland.
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Sotired
Sometimes I do wonder how much they rely on our ignorance to get away with the stuff they do.if I had known in the first four months what I learned the hard way,over the next 18, we would have been so much better off.like you, we had useless treatment and a refusal to hospitalise.
BUT you have rights too.they are your team-but you run things.so if you say you want weekly blood pressure and bloods done because things are at an essential standstill and you need more information physically about your daughters condition, they have to abide by it.or you can bypass them, set up your own doctor appointment with your GP and go in with your list of things to check.my list would be heart rate taken orthostatically,blood pressure taken and blood tests.then if something shows up, you have ammunition to take back to your team.
Re hospital admission-which you may never need,but still good to know about- my understanding is that mostly it is only with parents looking up the guidelines and insisting they be followed that admission happens.
One of the guidelines is parental exhaustion and an inability to move forward with treatment at home.if they are never taking your ds obs, then they never truly know if she is well or not.it drives me wild that with the advent of FBT -which is great don't get me wrong- NZ clinicians have taken that to mean that our kids don't need anything from them.in no other illness would they be so lackadaisical.
I actually had support people to help me look at the guidelines, get past the unhelpful help we were getting and get my d to hospital.everything is a fight to get in NZ.its exhausting.
Don't treat them like they know too much,ok?they don't.we had one therapist who we were her first client.she gave us bad advice week after week.we had pyschs that after my d stopped eating at hospital didn't persevere but sent her home anyway.48hours later we would be back there.
Get your own team- even if it's just you, your GP and your partner.look up what you need to.ask around on here.dont be afraid to change things up and insist on weekly checks-if you get pushback from anorexia in particular,then that's what your d needs for sure.
If you aren't too afraid to have her away from you-and that's a totally legitimate fear- then ask about CFU if having her at home is just too hard.there is also residential treatment up here.this is not an illness that is short term so while you are still able to access child treatment, then do.residential is available past 18.
Don't be afraid to look up yours and your ds rights to effective treatment and use them.if ever an illness required a hardarse approach it's this one.
Sotired42
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PuddleduckNZ
Hi Casc,

I am in NZ too, just popping in here to say hi and do get in touch with stayinwithit and EDANZ for support.

My Son had vomiting phobia and it is very difficult to tackle ED along with this.

Sending all the good vibes to you in this fight, keep going, one foot in front of the other, one meal at a time.

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. 13.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
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