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kazi67

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Reply with quote  #1 
My d has had a fairly good few days (always worried as a mum and always watching carefully what she is eating)
Since starting in this awful journey I have tried to read everything I possibly could on this site and read recommended books, been to a course, followed advice (be in conflicting) from doctors, physc, dieticians etc
D had physc appt yesterday and is as confused as me now
Is this just the process? Does everyone feel as frustrated and confused as me?
Do I listen to what my d tells me or ignore her and allow the process?
She is so confused and upset and I kept saying trust me and trust the process
I have now got her referred to the specialist ed group in our city as she begged me that that's where she wants to go as claims the physc she seeing just confused her more
She currently seeing local physc
I don't know what to do anymore, well I know I need to feed her and that is going quite well
She gained some weight so now lower end of healthy BMI but obviously I realise she needs more weight on
Perhaps I'm just impatient and just need to vent [frown]
So very frustrating all of this
Especially when u have a few good days and you think yay!! It just gets slammed in your face and u think we r no where near the end [frown]
Love my d so very much as I know all of u here do your kids too, and hate to see them in so much pain and confusion
I'm guessing she will feel better once more weight is regained as I read on everyone's posts and tell her this too
She still thinks she is fat even though bones still stick out even with the weight gain
I'm guessing that is my indicator that she is not out of the woods yet
The distorted body image (does that ever go away)
Sorry for the rant
seaglass

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Reply with quote  #2 
How long has it been since you started treatment?

It's such a tough ride and a horrid illness. Like you I often found the help to be far from helpful and frustrating and felt very lost along the way.

You know that food is medicine and that is your first focus. It's hard though as while we get the food in and the weight up there's no quick fix and brain change can take a long time. And we watch our lovely children suffer and get despondent/sad/angry/in pain. As a parent you want nothing more than to make things better quickly.

Some people find it helpful to think of ED as something that hijacks our children and because they have this ED voice telling them all sorts of lies they can't see the truth. In the early days/weeks I tried so hard to reason with my d and try to get her to see the truth but soon realised that it was not helpful and I could never win an argument against her ED voice. I made a decision to just be loving and supportive but to not argue or reason with any ED 'lies'.

Having said all that you do need to feel that you've got the right support in place and feel confident that you have the right team behind you. If it doesn't feel helpful then do ask for a change.

I once read that for our children in the grip of an ed it's like being in a stormy sea with no idea where shore is. Your role is to be the lifejacket and keep waving a banner signalling the shore. Even just telling your d repeatedly that it WILL get better and you're there every step of the way is sometimes enough to get them through each day.

It's so hard though. We all get it.

I have been through many times when I didn't believe things would ever get any easier. But ever so slowly they ARE getting better. Bit by bit. Each small thing that is better is something to hold onto. Even if it's followed by a wobble or a bad day.

Keep up the food. Hang in there.

EC_Mom

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Reply with quote  #3 
If she is medically stable and eating well under your supervision, CONGRATULATIONS!! That is already huge and wonderful. In my non-doctor opinion, the groups and physicians are (as long as she is medically very stable and eating) not all that important. You already have the basics well established: You don't listen to ED blather and complaints beyond non-committal support for eating; you offer that she can just trust you; you insist on full nutrition. 

My d was violent, deranged, obsessed with thinness, broke things, etc. Now she is curvy and eats lots of snacks. We still stay vigilant but YES, the distorted body image seems to have gone away. I can't know for sure, but she seems happy with herself and , for instance, easily takes another size up if something at a store seems too small. In the worst times I would never have imagined how normal we are. (Knock on wood!)
kazi67

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Reply with quote  #4 
Thank you for your replies [smile]
We have only been on this journey for a month but it feels longer that's for sure!
We are on a wait list to see more specialised people, but in the meantime I have said to d we just have to keep eating and take a each day as it comes
I know when I read other posts other families have been struggling a lot longer that us
But it is still very frustrating when all you feel is confusion from conflicting advice from the "experts"
I will continue to monitor her meals and think I am just exhausted from the ever watchful eye you have to keep on them
My d is 18 and I am lucky in the fact that most of the time she tries so very hard to fight this demon and tres to listen to me
When u think they should feel better after a physc appt and they don't it is heartbreaking
Anyway thanks so much what you have both said has made me feel a bit better and less alone [smile]
I appreciate the support [smile]
tina72

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Reply with quote  #5 
Hi kazi67,
I know this feeling of inpatience and that you want to get rid of all that soon and hope you get some good advice and have someone to take your hand and help you through that hard battle. You feel so lonely and hopeless and you think this will never get better.
But as you said: you are only a month in that. Try to be a little bit more patient. We have done refeeding for 8 months now and I can promise you: it will get better. There is a light at the end of tunnel ED. What I discovered now is that we didnยดt see all the small steps forward in the first hard times because we were so stuck in all that. Try to write a little dairy. Write down what worked and what not, what you achieved. The first completely eaten plate. The first time without cutting small pieces. The first snacking from other plates. The first cake. The first ice-cream. The first second plate...We now see all these small progesses looking backwards. Adding them shows us what she achieved in the past 8 months.
Getting different information from everybody seems to be our fate [smile]. Try to listen to your heart. Does it help? Does it sound logical? You know her the best. You love her the most. You know what is good for her.
Looking backwards I can say that every good tip and information was from other parents. Nobody knows better what helps and what to do. No doctor and no psychologist and nobody with healthy children knows what you are going through. They cannot imagine what it means to have ED in the house 24/7.
Keep on going! If she is gaining weight, you are doing a very good job!
Tina72
toothfairy

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Reply with quote  #6 
Hi there,
FOOD IS HER MEDICINE.
Keep feeding, this is a marathon not a sprint.

__________________
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.
kazi67

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Reply with quote  #7 
Thankyou so much tina72 and tooth fairy I know I have to learn to be patient
We took her to the doctors yesterday as we were all at our wits end no sleep all night and d just crying and crying
She has been really trying so hard to eat anyway long story short doc prescribed anti depressants talked to her for a long time without us and then to all of us
Recommended to find a different physc and she is a different kid this morn (much happier)
Yay!!!!
I love the diary idea and have actually enrolled in a special course (recommended by another ed course I went on) so yes I do think we have to keep note of the progress but I guess that's why I freak out when I see her have a set back (so scared the demon is back and never knowing how long it's back for and so frustrating when u think d has come so far)
She had a weight gain of 5.1kg the month!!!!!
I was so happy but of course did not say a thing lol
Thanks again for your support I thought I'd completely lost it yesterday
Honestly much confusing info it makes u feel like u dont know what to do and if u r in fact adding to d confusion
But I realise I have to trust my gut too
Good luck everyone on this awful journey we are on together and thanks again for this great site and the support it offers us exhausted frustrated scared concerned parents xx
EC_Mom

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Reply with quote  #8 
5.1 kg of gain is fabulous!! (I'm trusting that this was done with a urine test tor rule out waterloading and with nothing on in which she could hide weights--they really do these things...)

It is a hellish phase but you will note that in tiny, tiny increments things get better.
BattyMatty_UK

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Reply with quote  #9 
Recovery can be soooooo very slow, but there's some excellent advice above. It can also be so confusing. With us there would be the stuff I'd read here on the forum being at odds with what was being said in the therapy room. In the end I came to trust my gut instinct (which went along with what was being said on this forum and on the main FEAST website). I also agree with the concept of separating your child from the ED. We used to refer to it as the 'anorexia demon' or 'the demon ED' or 'the ED voice'. It all kind of reminded me of a poem my son wrote following his recovery from AN which refers to 'the ED voice':

Never Again

Four years of torture, four years of pain,

Four years of worry, envy and shame.

You promised us love, you promised us life,

You promised us glory, not discomfort or strife.

We worked through the day, we worked till we cried,

We worked till I realised that you had lied.

Our life became hidden, shrouded in fears,

Our life was unworthy, hollowed by tears.

You took our passion, took pleasure with pride,

You took away our love and forced us to hide.

Fearing our friends, fearing our fate,

Fearing ourselves with anger and hate.

You watched us grow cold, you watched us grow thin,

You watched us in misery with that cold-hearted grin.

Yet now rid of you, rid of your pain,

I have one thing to say to you and that is; never again.


__________________
Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
kazi67

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Reply with quote  #10 
Ok firstly feeling so very naive as no idea what the water loading thing was all about but
No no testing was done but in saying that my d had no idea she was going to be weighed and we were lucky to get her to eat that morn let alone I do t think she drank anything so I hope it was a true indication of her wright gain
I'm beginning to realise I really need to get pro active in getting the proper care she needs
I rang the govt run ed orginisatiin for our capital city today 6 month wait list
WTAF!!! [smile] disgraceful
Anyways they gave out numbers for some specialised ed physc and we now have an appoint for 15/9
So I guess we "hang in there" and keep eating till then
Positive note d is much happier today especially as she doesn't have to go see other physc coz in her words "wasn't helping me to feel better"
Love the poem for all the wrong reasons but truly is a beautifully piece of writing
Thank you all for kind helpful words
I Only wish I could help others on this site but am sorry am so new at this I don't feel I can
But my heart goes out to you all!!!
And we've only been living thus nightmare for 4-6 weeks
Some of the families here for years I'm so sorry for u all and feel bad about asking for help but feel such frustration at times is the only reason I reach out
Thanks again everyone
You are all amazing mummas and I honestly feel for u all!!!
Let's not let the demon win!!!!
EC_Mom

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Reply with quote  #11 
Kazi, you don't have to worry about being new to this misery of ED. People on this board understand that there is a steep learning curve and you are fortunate to have found us. Some day you can post messages to help others (even already!).

Some RAN patients drink tons of water before a weigh-in, so that their true weight loss is masked. Our ED-specialized pediatrician does a test ("specific gravity" I think is the name) of urine before the weigh-in to be sure that the urine is not diluted but is normal, i.e. to detect waterloading.

ED patients also have been known to figure out extremely devious ways to add weight to themselves for a weigh-in--rocks in pockets, weights sewn into bras (no kidding), etc.

Not sure where you are writing from, but let me say that sadly, many people here have gotten bad advice from "experts". If you hear any of the following you should run away:

"Underlying causes"
"Desire for control"
"It's not about the food"
"Overinvolved parents"

If you hear things like "FBT", "Maudsley", "genetic predisposition", "nutritional rehabilitation/refeeding", "evidence-based", "support with eating", then you are on the right track, most likely.

Unfortunately you can't take your d's desires as definitive in any way. She might hate a doctor who has the evidence-based approach--because that doctor will help you help her put on weight. As you are gathering, a lot of what parents have to do is tolerate the distress of their kids. Fake a calm confidence. She wants to know, deep inside, that you will rescue her from this, but ED won't let her say that.

BattyMatty_UK

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Reply with quote  #12 
EC_Mom speaks so much sense. I completely agree.

It is such a massive learning curve at a time when the last thing we have energy for is cramming up on eating disorders - we want to be able to focus 100% on our child and their recovery. It's one of the reasons why I started my blog, because I wanted to help other parents to 'fast track' their way through the huge learning curve so they can get on with the business of getting their child well again.

Also there can be so much conflicting advice, but EC_Mom's suggestions on what to listen out for are excellent.

All of us were newbies at some time or other. I first posted here in March 2010. I hadn't a clue what to do, I was desperate and so very alone. I had a gut instinct that our local doctors, therapists, etc were 'singing from a totally different hymn sheet' from what I was reading here and on the main FEAST website, and in the books I was reading. Looking back, I can see clearly that - to be honest, in my opinion and our situation - the medics were wrong (outdated treatments) and what I was discovering here was more along the right lines. Of course no one form of treatment fits everyone and there will be some young people for whom the evidence-based FBT (Family Based Treatment) doesn't work, but most of us strongly believe in re-feeding our child first and then working on what's going on inside their head once their brain has healed somewhat thanks to a solid, balanced diet in sufficient quantities so they put on weight.

Doing this isn't easy and you will find lots of support and resources here. Never forget that none of us understood the 'jargon' of eating disorders at the start and none of us chose to be here. But most of us are thankful that we did discover this wonderful and supportive forum!

And, in the future, once your D is recovered you might want to come back and help others, as you say above. But right now, it's you that needs the support from us!!

xxxxxxx

__________________
Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
kazi67

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Reply with quote  #13 
I just want to update progress on my d and to thank all you beautiful people for helping me to (I believe) save my d life
I am truly so grateful for all the information and support you all have given me you are all just WONDERFUL!!!!
I have felt so totally frustrated with doctors, dietician and physcs and the latest being I don't get to go into apptmts
Thankfully I found this site and got more info and advise that made sense then from any of the so called "professionals"
I felt as if I had completely lost my mind at one stage functioning on only around 2-3 hours sleep per night, I gave up work for a term and stayed home to care for my d, i reluctantly went back to work this term (any blimps and I will take more time off)
my d is going well we have mostly good days
She is not WR as yet but mood is back to normal, socialising again, anxieties nearly gone honestly I felt like I have my gorgeous girl back
I am So very fearful of relapse, ever watchful of every thing......
I can't thank you all enough I know we are not out of the woods but I just wanted to share my happy day
We have had SO many un happy ones it's good to feel some happiness
Everyone told me (friends/work mates etc) said to take time to self care
Umm.....,excuse me how do u do that when u r the thick of re feeding???
Anyway I now feel I can now get to do this yay!!! and I'm looking forward to a bath this weekend [smile]
I also wanted to share this msg d sent to me just the other day after she brought me a bunch of roses

Love you so much
Hope the roses I brought you remind you of yourself - BEAUTIFUL! and not till u look closely at the detail how truly special you are
Love you more than you could ever imagine

Thank you everyone who posts and especially to the ones who replied with such helpful advise
I know you know how special you all are and what remarkable parents we all are fighting this repulsive illness
Big hugs and much love to u all
xxxxx
Mamaroo

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Reply with quote  #14 
Great news ๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜. Thanks for sharing!
__________________
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.
Mamaroo

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Reply with quote  #15 
Hi Kazi,
If you are still looking for a gp specialising in ED, I can highly recommend Dr Christina Di Camillo. She is in Wembley and the practice number is 9387 5000.
Best wishes

__________________
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.
kazi67

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Reply with quote  #16 
THANK YOU!!!
kazi67

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Reply with quote  #17 
I tried this number and was told doctor isn't ed specialised only refers on ??
Mamaroo

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Reply with quote  #18 
Hi, did you speak to the dr or receptionist? It is true that they refer on, however someone with ED still needs to be medically monitored on a regular basis.

When my d became ill, I went to our local gp, who weighed her (not blind), measured her height, ordered blood tests and referred me to a local therapist. She was a general family therapist, not FBT, but told me to feed and weigh her, while she'll be working on the 'underlying issues'. When my d continued to loose weight, she said to get my Dr to refer her to PMH. Got an appointment at same practice, but different dr, who weighed her again (not blind) told me her weight is fine. Went back with her BMI chart and my bad temper and got my referral. When I asked if he could medically monitor her while we waited for PMH, he refused saying there's nothing he could do.

I the mean time,I found an ED psychologist who referred me to dr Di Camillo. When we went to see her, she knew exactly what to do, knew how to blind weigh, check for weights in pockets, examined her stomach, took her hear rate and blood pressure lying down and standing up and urged her to eat. We saw her every week, while we waited for PMH. In comparison to our other Drs, she is definitely a specialist.

At PMH, the dr checked the same vitals, so I'm not sure what the gp is supposed to do more. When we are discharged from PMH, we will be definitely go back to dr Di Camillo.

Best of luck and hope you get the help you need.

__________________
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.
mjkz

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Reply with quote  #19 
Quote:
I the mean time,I found an ED psychologist who referred me to dr Di Camillo. When we went to see her, she knew exactly what to do, knew how to blind weigh, check for weights in pockets, examined her stomach, took her hear rate and blood pressure lying down and standing up and urged her to eat. We saw her every week, while we waited for PMH. In comparison to our other Drs, she is definitely a specialist.


She might not specialize but she is definitely a keeper!!
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