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BJUK

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Reply with quote  #51 
Wishing you a lovely break in France! Hoping that the change in surroundings brings some respite to you all.
Bon voyage!
Gina

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Reply with quote  #52 
Hi Nelly,
Hoping you have a decent break and that the change of environment will help your d. Sometimes, when away from the norm, I think they are allowed to behave in a different way.
Wishing you a relaxing as possible break. X
NELLY_UK

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Reply with quote  #53 
Well, here we are. Day five and the restricting is there all day then the eating is in the evening but not as much as at home because we don't have huge stocks of food. D wanted to purge two nights in a row but has not due to bf being here. If it was just us we would have had the fights and violence and purging we can see it so clearly.
D is going out in the evening then snacking when she gets in late at night.
It is topsy turvy but if she can go two weeks without purging that would be amazing. As long as she eats.
H seemed to think we would leave most of ed behind- bit naive.
I can see how we are worn down with the fighting but bf isn't yet.
I can also see how when we get back she will be looking forward to a B/P session.
We have to hope the weigh in when we get back is not hugely different.
I see things sharply now ready for the slam assessment.
We can't do it at home because she won't. Here she will not purge. So far. She has tried and we have stopped her and she doesn't kick and scream on a campsite. At home there are no holds barred. Just like in IP. She let rip there when she wanted to purge.got restrained sectionned and IM dosed up.
Sad that we have to cope with the violence. Perhaps we should be more assertive again and call the police more. How ed has weakened us and the fight in us is gone- long gone.


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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
Sotired

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Reply with quote  #54 
Hi nelly, I was just reading up on the slam assessment as we don't have the same system in NZ.it gives the option of doing inpatient as well as outpatient,which might be worth looking into as you and your h are so tired. It does say it treat from 18+,but as they are giving the assessment I would work under the assumption that they have decided to put your d under adult services as they have mine.
I really hope that you can push for that and as your d is still 16?,you are her legal guardians and as such can apply for her to have this treatment whether or not she wants it.the fact that she has purged so often that she has lost teeth can be brought up as ammunition if needed I reckon.
It is good in a way that this holiday is giving you a chance to clarify how you feel,see clearly what is needed from the health professionals and find a way to achieve it.what about having an advocate at the assessment that is there for you,to back you up and speak for you if needed?this was provided for me by my younger sister but there are advocacy services that could help you with this.if we have them in my tiny country,they must have them in yours,you could use a therapist even,anyone who can work the system to get younwhat you need.
Anyway,hope your holiday is going ok,

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NELLY_UK

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Reply with quote  #55 
Our advocate is refusing to help as d has not given consent!!!!
Slam is also 3 hours away so not sure they would travel that far anyway.
We have been told now d is 16 she has to consent to treatment unless under a section.
So we have no power over our sick child but we have to look after her. Sucks.

She managed to lose bf on site yesterday, came back and ate after a meal out- salad. And went off to find him again. Then I realised there are shared toilet facilities in places where we are - we are in a chalet with our own, and sure enough D was in a toilet purging. She got angry and shouted in spite of other people around. She threatened me etc etc but I stayed so the purge was brief.
Then she went to find bf avoiding the shared loos. I don't know where there are others and I didn't follow her. Last night I didn't sleep a wink.
Frustration anger and fear tbh. If she goes home and the minute bf is gone is up to her BP ways she will lose her job.
Then wtf will I do with her? Home, sick with nothing to do. And no money to fund her nails eyelashes weaves vanity. So temper tantrums galore.
Absolutely had enough.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
Sotired

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Reply with quote  #56 
Wow,that sucks.does the advocate have her facts right?she is there to advocate on behalf of you for your ds treatment so should not require consent from your d.after all,if it was an Aunty advocating for you she wouldn't ask your d if it was ok,would she?
It sounds like a slam assessment in conjunction with placing your d under the mental health act-which does not require her consent,only your and the psychiatrists who then take to a judge,would be your next option then.
Although the slam assessment place is three hours away,if it gets you what you need then it is worth the time invested.do you have someone in the family who could go with you if the advocate won't?there must be a way.if only loopholes were as easy for us to find as eating disorders find them.
Keep trying if you can,

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NELLY_UK

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Reply with quote  #57 
The MHA took place a week ago and d is not detain able.
Plan Z anyone?
Drink and drugs I guess. Getting depressed myself because of her ed. And angry.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
NELLY_UK

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Reply with quote  #58 
Nightmare on holiday she won't eat more than a few prawns and lettuce and diet coke.
Tempted to go home but it's so hot and sunny here. H is in a filthy mood. Can't do anything because d is not eating.
Why did we bother?

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
MarcellaUK

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Reply with quote  #59 
It's so hard for you Nelly - the stupid system which forces your poor daughter to make decisions for herself that she is not capable of making and gives you so much responsibility and so little power.

If you did cut your holiday short and go home, would it be any better/safer for your d? What would happen? Would anyone be able to help her if she continued to be unable to eat? Are you able to keep her hydrated in the heat?

Sorry for the questions - just trying to see what options you have now, and how you can try to get a higher level of support for all of you when you get home whether that's tomorrow or on the date when you intended to return 

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Fiona Marcella UK
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Reply with quote  #60 
Hi Nelly-UK, sorry things are so awful on holidays .this illness affects the whole family , do you feel things are more easily managed at home , if so could either you or your husband go home with d and other person stay on with rest of family. I was in London at concert last weekend with d a friend and friends mom it was a nightmare from start to finish . Things settled when we got home , far from perfect but at least eating enough to maintain .is your d seeing a therapist at the moment .
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
NELLY_UK

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Reply with quote  #61 
At home she would bp more. So possibly it's better here. And Simba is getting a break although he is missing us terribly.
She sees a therapist when she gets weighed but the therapist says ' would you like to talk?' So d says no and that's that!! Whereas the care co ordinator who weighs her just talks to her - astonishing - breaking news - he doesn't ask he just does it. And she chats more and more. But she is in control of when she leaves and it is pretty quickly.
We should be seeing a family therapist but it keeps being cancelled. Now we are away then she is too.
Left d with bf to eat, went for a bike ride and sangria with h along the beautiful French coast.
Now d is out on the bike with bf.
Zzzzzzz

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
Linda2

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Reply with quote  #62 
Hi Nelly,

I hardly look on here anymore but when I do I look how you are. It is such a struggle isn't it. I just wanted to say: keep going, don't give up.
We nearly lost our daughter numerous times, in & out of hospital, similar things you are experiencing. After lots of failed help/ failed hospital admissions, my daughter was finally ready to try with us at home, so I jus wanted to share a couple of things that really helped us:
- Stay close to her. Even when you can't do a thing, just say 'we are here and we love you'. You won't be able to stop her vomiting though. Just stay calm;give her silent empathy at that moment in time and heaps of self-compassion for you. We had our bed in the lounge for 2 years right outside my daughter's bedroom door. 
I used to have a sleep after coming home from work, while my husband cooked dinner, then I stay up with my daughter from 2 to 4 am (not being able to do much more than just 'being there'). Later I had to delete all my posts on this forum, because my daughter saw them.
- Mother-daughter relationship is full of emotions. Guilt feelings are never far away and anorexia/bulimia thrives on Guilt. For this reason my husband started to do the food-stuff and I the 'empathy/ promoting positive self-esteem.
- Work as a team. If you can't do that yet (we couldn't for a long time!), 'fake it until you can make it', especially in front of 'the professionals'  (Very important!)
- Buy 'tooth mouse'. It is expensive but it will protect your daughters' teeth if she agrees to rub the paste on. My daughter also never used to brush her teeth after vomiting, because it is worse for your teeth.
- Buy 'pre- and probiotics'. When a child vomits a lot the lining in the guts goes. The guts is like a 'second brain'. No pre-biotics in the guts: no brain. You can buy it from the chemist, or: buy 'Happy Belly' juice
(my daughter definitely refused to take 'Bowel-Health' in a great big white bottle!
- Have little 'escapades' with your husband. When my daughter was so sick, all we could afford was a walk in the garden! (because of self harm, running off etc). Never mind: a walk in the garden it was! Try to do 10-15 minutes. Why is it important: you and you husband will have the opportunity to have a chat and some 'you'-time.
We still regularly walk around the block (20-30 minutes).
- Find out what you daughter is into and promote this! Our daughter was into music, so I bought her an electric guitar and a music  tutoring programme online. After 2 years practicing fanatically (she couldn't even hold the guitar really) she said: I think the music is changing my brain! Music is good but it doesn't have to be music; just something else she can get 'stuck into'. 
- Keep checking potassium levels , electrolytes, etc. and know what medication she is taking. We learnt to be knowledgable ourselves, because often doctors and nurses don't have enough knowledge  (hopefully this is now a little better where we are; we were told that the 'protocol' has been adjusted after our complaint to the Health & Disability Commissioner. We used to feel quite angry about the lack of knowledge and the mistakes but it is a pretty tricky illness. It is just too hard to understand that the child doesn't want help. 
- Be patient (I know you are, because otherwise you wouldn't still be here!).
- Sorry if this all sounds too much like 'advise' (now I worry, because they often say 'advise' is not a good thing, but I really wish I would have found out about some of the above 5 years earlier! We found out bits and pieces from everywhere- parent group, ex-bullemic patients, other parents, this forum...and even some 'wisdom' from 'professionals' , but most of their strategy was just, kind of, almost no reaction at all, until she was nearly dying, while we were anxiously waiting in the waiting room (sorry to sound negative, but if any professional reads this: please give us a chance and try TRUSTING parents and work alongside us.

Lots of love,
Linda
NELLY_UK

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Reply with quote  #63 
Ha professionals trusting parents- what parallel universe are you in?! [biggrin]
I said as much at the MHA , they asked if d worked with therapists. I said they all gave different messages and different weight ranges and NONE of them worked in collaboration with us - the family who are the ones clearing up the vomit, unblocking drains, running out of food, watching food bills rise and rise. Having a son who eats a lot and can't find the food because it's hidden.
Holiday is weird. D fell out with her bf big time yesterday and he wanted to fly home five days early. His mum was texting me getting aggitated. D ran off and SH then she said she was hearing voices again. Stress related no doubt.
Finally they spoke and have reached some sort of equilibrium. H and I cycled off to the cocktail bar as fast as possible!!
When we got back they were out.
Trying to grab every opportunity possible.
Trying to think how we can keep the good things achieved whilst away going - ie the not purge ing or bingeing.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
NELLY_UK

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Reply with quote  #64 
Better day today. Less restriction. Prawns and lettuce at least three times today with tomatoes and cucumber and sauce.
Yoghurt apple. She is laying down now after eating so no purge. Really hope this break in the b****y awful pattern at home can be maintained. All it will take is one comment from Simba and she will blame him and be off again.
Or one of us.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
NELLY_UK

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Reply with quote  #65 
Sigh - d skipped lunch due to waking up very late.
Her nose piercing came out.
She SH and went crazeeee shouting screaming head banging.
I drove her away from the campsite to give other people some peace and she threatened to kill me because her nose piercing wouldn't go back in. I said it can be re pierced but if it's going to keep coming out maybe it's not such a good idea.
After over an hour of this ridiculousness her BF got the sodding piercing back in and she apologised. Ate dinner and went off to the pool.
She was still in such a state though and we suspect she purged.
There's nothing anyone can say but just GGRRr and camhs say she is fine. Wouldn't surprise me if they discharged her tbh.
We have upped her meds.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
Sotired

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Reply with quote  #66 
Sounding like the holiday from hell nelly!i have visions of you drinking your way through it,I know I would be sorely tempted.i only wish there was some way I could help,you make the NZ system sound awesome and that's no mean feat considering that it's really not great.
It is nice that in previous posts you and your h have managed some time away to cycle and drink sangria at least.is your d s self harm sorted and ok?our d still has awful deep scratches from self harm at the moment, turned my stomach every time I looked at them.she is also not eating much so we will be back in hospital next week probably as even though she is under the MHA thrive won't enforce supplements.yet another birthday party she will miss out on.
She always plans it but she doesn't eat enough to be able to do it.no weekend leave either which means we will have to take our 7 yr old with us up to thrive.sigh.he knows more about anorexia than any kid should, makes me so sad. C'est la vie,eh?
Anyway,take any small moments you can,thinking of you,

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Sotired42
ooKoo

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Reply with quote  #67 
Nelly, my D had a very similar reaction when her nose piecing came out a week after it was done.....it closed up and there was no way we were able to get it back in. She was on home leave from Chalkhill and things had been going well to that point! I took her back to the piecing studio and got it done again, but with a hoop rather than a stud (prefer the look of the stud, but hey ho).

I actually think my Ds coping mechanism was non-existent, she fell to pieces! It was totally ridiculous, of course, but to her it really was the end of her world!

I hope things settle today, and you can at least relax a bit again. X

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UK - South East

17.5 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions.
2017: Currently attending CAMHS CBT. WR, at college, living life to the max.

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
NELLY_UK

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Reply with quote  #68 
Settle ? Hmmmm!
Sadly the hired bikes have been returned so no more sangria or piña coladas by the beach bar.
D and bf seem to have fallen out and d has no idea why. Probs coz she is so moody and is not eating which doesn't help.
They woke at about 2pm again so we did a shop for booze mainly Ze French wine and cider and returned the bikes.
Two sulky teens at the pool together. Maybe it was the piercing meltdown that did it.
H and I are just soaking up the sun by the pool (a different one to D) before our return to the UK Sunday.
Wonder what today's drama will be.
OoKoo how is your outpatient care going? DIY? Probably for the best.
I never got an apology from Dr G for threatening behaviour. UHS have discharged us without telling a soul!! Therapist doesn't talk unless given permission by d. FT next appt is in September. Will go to that just to vent I think. Med review reduced meds and we had suicidal tendencies lost a job and self harm so next time we try to reduce it will be when ed is a distant memory and not before.
Could be a long wait.
SoTired - I like the sound I the NZ residential places. We don't have those in the uk or if we do there are 4 places for the entire country.
We could do with some respite from the daily stress of ed. And support.
Don't laugh I contacted a place in the u.s for treatment.




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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
ooKoo

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Reply with quote  #69 
DIY is the way forward for us......my D is absolutely flying. She is eating, snacking freely and her anxiety and depression seem in check at the moment. With this, she has gained a huge amount of confidence and is much more self assured socially....(she has always strggled socially) ...maybe AN was something she had to go through to get to a good place....I dont know.

We are being discharged from FEDS and will no doubt languish on a CAMHS list somewhere, but wont have any contact.

If all still good, then we will be heading over to France next Saturday (fingers crossed).

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UK - South East

17.5 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions.
2017: Currently attending CAMHS CBT. WR, at college, living life to the max.

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
Sotired

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Reply with quote  #70 
We have two places and only one is free.the other one can be made free in special circumstances,God only knows what they are considering what had to happen to get our d into residential.i tried to write it but it was too painful so I deleted the post.
If you have four,that's four chances and if you never apply you will never get.apply,keep applying,bug them. We have a saying 'the squeaky wheel gets the grease' in the autism community but it also applies to anorexia.get your d on a waiting list,then check every week to see where she is on that list.if residential is what you need then check out home options before the states.tell whoever you meet with that this is it,you can't do this anymore.dont be brave,strip yourself metaphorically naked so they can actually see what it does to you to be constantly rejected.i cried and cried,I shouted,in the end I said,give her treatment or she's out on the street because I just can't do this anymore.in the end it was more about what I needed than what my d needed that got me help.
Use what you have to get what you need.if that is despair,then use that.being brave got me nowhere, falling apart in front of professionals and being completely honest about how I couldn't cope anymore did.four places, four chances.if you have to travel,well it's no further than France,eh.i feel for you nelly,I know how rotten all this is.with older teens the challenges are so much harder.good luck,

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NELLY_UK

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Reply with quote  #71 
I was guessing at the four places. I think Ashleigh house is the place and it's for people who have had several failed IP attempts. We can't even get those as d is technically healthy weight and bloods don't show a thing.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
Sotired

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Reply with quote  #72 
Bloods hardly ever do,I don't even count them in my admit my d to hospital now please approach.in fact I warn them ahead of time that bloods will be normal,her obs might be ok,but actually she's really sick.even her weight,she is around 54kg at the moment but,so?if she hasn't eaten or drunk anything for two days I still admit.in short my d looks healthy but her brain is f*****d up.
Now is the time to stop guessing,look into what is there,point out that of course with bulimia she looks healthy but she's damn sick actually.what are the admittance protocols for bulimia?if you don't know,ask.they can't be the same as anorexia because the illnesses are different.if they are the same,then go over the admittance with a fine tooth comb,look for the thing that gets your d admitted.for us it was using the parents are exhausted protocol.dont rely on anyone else to look those up for you unless it's a trusted friend.the hospital won't tell you,nor will the residential,they make it as clear as mud.but their admitting procedures are usually online.if this is what you want nelly then there has to be a way.what happened to slam assessment?are you ringing them every day til it happens.dont give up,never, never,never give up.get going on those protocols, thinking of you hon,

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Sotired42
MarcellaUK

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Reply with quote  #73 
I'm afraid that there aren't the same kind of protocols for BN that exist for AN (namely the MARSIPAN Guidelines which aren't perfect but are a heck of a lot less vague and more up to date than the 2004 NICE Guidelines). Those guidelines that do exist specifically state that "The great majority of patients with bulimia nervosa can be treated as outpatients. There is a very limited role for the inpatient treatment of bulimia nervosa. This is primarily concerned with the management of suicide risk or severe self-harm" NICE Guidelines 1.3.4 Service interventions for bulimia nervosa.

I know that you know this Nelly - you are a very wise and sadly have had to become a very educated mother. I'm not sure what you can do with this knowledge though, any more than I knew what to do with it when we were in a similar situation (not so much purging, but possible more self-harm). Places like Ashleigh House used to vaguely mention self-funding and other options but I think are now only able to offer places to those whose full funding has been agreed by their local services, not something that many local services are keen to do. Maybe they are even right to be so cautious in spending their money on sending people a long way from home but it doesn't help a lot to wonder about that when the illness is rampaging at home and putting everyone in danger.


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Fiona Marcella UK
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Reply with quote  #74 
Dear Nelly,

With your really long journey & difficulties with service providers it might be of interest for you to become involved with this that I found on the F.E.A.S.T face book page posted by Fiona Bromelow

http://www.b-eat.co.uk/research/participate-in-research/1996-service-use-experiences-of-young-people-with-eds-and-their-parents

Might be a further way of getting the poor performance into the spot light that might make a difference.

Warm & Kind thoughts to you

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Sotired

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Reply with quote  #75 
Thanks marcelka for helping me understand your system.the words that interested me the most are the for the great majority.is there a way nelly can use those words to help with getting her d admitted if needed? For the great majority this works but we are now at a point that I think we all agree more intervention is needed, kind of thing?
Like I said,to get my d just into hospital required us using the words they wrote to our advantage.can she get the help from Ashleigh house with her local provider helping?is it like butterfly where it sounds like the atdt community stepped in to apply pressure to get her d help?i hate how many hoops we have to jump through and in many ways I'm just trying to brainstorm a couple of ideas,which I realise you may have tried early on but might be able to be revisited now that the journey has been so long.
I am still having to jump through some hoops myself with my kids special needs providers so I truly understand how tiring it is to get anything.you have to fight and manipulate and act in ways that are foreign to you but it seems to be the only way to get help.in fact the best way I got help for my d sadly is by completely falling apart at the seams.onlybwhen they saw I couldn't cope did they truly step in.
I wish I could do more to help ,but I'm thinking of you and if some kind of petition needs signing, I'm in.
Hugs to you all,

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