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NELLY_UK

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Reply with quote  #76 
Hi there, back safe from France. Wow what a journey! In many ways!
D started to eat better and kept it down. We think she purged once or twice in two weeks which is amazing and breaks the pattern.
She decided she wants to be normal. I had to persuade her to keep taking her meds.
Anyway, today was weigh day but as she is doing a lot better I asked to hold off for now. I think the numbers could de rail her.
Fortunately they agreed.
Tomorrow we are doing the blood tests as normal. They are still weekly for now.
I really hope this can continue.

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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.
K63

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Reply with quote  #77 
Hi nelly-UK, great to hear things sound better a break in pattern can only be positive , hope d can keep this going . A good idea to defer weighing as it often doesn't help anyone and we know by looking at our kids if it's really necessary . Hope you feeling a bit better after the break . Wishing ye the best .
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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. 
ooKoo

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Reply with quote  #78 
Hi Nelly, Sounds more positive.

We don't weigh, as it is a trigger. We all know she is gaining.....we can tell by her state of mind, and by her changing body shape.

Hope your D continues to break the cycle and that she strives towards that magic "normal".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  #79 
OoKoo -- goss....
Dr G has GONE!!!
retired suddenly.
We now have the local psych in charge of us. He waffles but he is kind and caring. Bit of a softie so no good for dealing with D.
For all his bad ways Dr G did tell her straight. Even if it was the wrong weight.
Still doing fine. D stayed at a friends last night- something she hasn't done in ages, months. She preferred staying in bingeing and purging. Mate has hot tub, so lovely evening in the wind and rain in the tub then horror films.
She has also arranged to meet other friends later today.
Need to tell her to control the eating as it's a slippery slope.
Still keeping everything crossed. We did bloods today and I said if she continues doing well that can be reduced.
Too scared to hope for too much.

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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.
Calm_USA

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Reply with quote  #80 
Nelly,  praying these positive signs continue and strengthen.  How wonderful that she is interacting with friends.  That is a huge posititve step.
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Mom of a 19 yr old. RAN diagnosed 1/2014. Residential, PHP, IOP. W/R since late summer 2014. Now in remission and thriving in her second year at university. My Faith remains.
ooKoo

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Reply with quote  #81 
Unusual for a professional to retire suddenly.... hmmmmmm... interesting! We were discharged from feds today...just under Tier2 camhs now...but without any contact unless needed.....a safety net really.

Interaction with friends was key for us...would be good to keep up the momentum if you can. My D has met lots of new people since leaving school and has so much more confidence when socialising now.

Be warned, a sudden cancellation or change of plan could make things tricky....my D had a day at Thorpe Park planned just after she came out of IP and her friends cancelled it at the last minute....she couldnt cope with that (similar to when her nose piercing came out) and she SH and had a melt down. A few weeks in, her coping mechanisms are much more steady and less meltdowns (other than normal teenage angst).

I know what you mean about being scared to hope......keep going, one day at a time.....

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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  #82 
Yes weighing is a trigger.
We have the slam assessment Monday and they will want to weigh her. Can I refuse this given my concerns? It could upset the progress made and out us back to square one.
Terrified.
I will ring them tomorrow. I can't afford not to go for the assessment though and I have no doubt she will find some scales in a friends house if she hasn't already.

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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.
NellyMac_UK

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Reply with quote  #83 
Hi Nelly, glad to see things are going a bit better at the moment.  Sending you hugs and support xxx
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Diagnosed RAN October 2013, w/r but struggling with depression and anxiety.
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Reply with quote  #84 
Nelly so glad you had a good holiday and survived it...........
less purging is huge and you made me smile with you coveting her weigh bless you by not allowing weigh in
Boy gain is like precious gold to us mothers isn't it???

Sounds like things have improved a little and you and D so deserve this to last
You are a great steadfast, caring mum and I am very proud of you as you struggle on with your difficult journey 
hug xxx

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Reply with quote  #85 
Go to the assessment,if they weigh her maybe it could be a blind weigh in,that's what happens in hospital.
Glad to hear there have been moments of happiness for you,it's dark times again here so at least things are a bit better your end.if in patient is what you want focus on everything bad that happened though,not the good. Only the people in crisis get the help.sad but true,keeping my fingers crossed for you,

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NELLY_UK

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Reply with quote  #86 
I just want to know what they would do with her treatment. They are world experts with good success rates. I want to be able to get CBT or DBT or whatever they recommend and not have to accept there is nothing but talking for bulimia.
It's about time Sussex NHS found out what they should have been doing since discharge from IP.
Could be they are doing all they should but I doubt it.

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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  #87 
There is no reason why they should not admit her or have her in a day programme if that is what you want ,since their own website clearly states they treat bulimia and anorexia.print it it out,high light the bulimia bits.sometimes it takes being faced with their own protocols in black and white for them to accept you have asked long enough.
Take in all reports,including the dentist one that proves damage done through constant purging.take in the diagnosis.everything .take in a note from your go detailing the stress the family is under and how it is breaking the family unit.it all matters and builds up a clear picture of what has been done,what was promised to be done but wasn't,and what desperately needs to be done.say that before any decision is made they must go through the papers as you have spent a lot of time gathering them and it paints an overall picture as opposed to a snapshot.
Good luck nelly,
We have our wraparound meeting tomorrow ,looking forward to it like a hole in the head.[frown]

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NELLY_UK

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Reply with quote  #88 
Oh big relief, d employer has made adjustments at work to accommodate her better. Appointments and duties are less stressful. They will be watching and pushing her and it is what is behind her push for recovery.
She is very up for this now.
I contacted slam to update them and mention the weighing. I will see what they suggest. If we can stay here and creep forwards I will be ecstatic. I am very aware that a relapse would knock me back big time.
And my H.
Still holding my breathe. D is out with a friend later an she is staying here. Then working tomorrow.

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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  #89 
Good to hear all the positives nelly!hope it continues along this path for you,
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NELLY_UK

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Reply with quote  #90 
The calm continues.
She was starving after a day at work and tried to get by on a salad but ate more. Not sure if she felt it was too much but she went for a bike ride within an hour [frown]
Today she pulled it back again and eating is under control.
Thing is on holiday she did eat quite a lot late at night and kept it in. Is this a tactic to avoid stress maybe?
Got slam assessment Monday leaving at the crack of dawn for a long drive.
Still holding my breathe and not as confident as a few days ago.

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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  #91 
Just remember to focus on what has been the norm for far too long in your house when the assessment happens.do not be stoic,positive,focus only on the realities.it sounds to me,as it did when you were on holiday ,that your d is now doing anorexic behaviours,eating as little as possible and then exercising.if she is working all day and not eating,coming home,eating not much then exercising,that's an anorexic behaviour and just as concerning as the bulimic one.
I'm sorry nelly,I was hoping that things had really changed for you,but from what I'm reading that's what I'm getting,that she has just swooped out the behaviours.i am happy to be wrong though...
Good luck for the assessment

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NELLY_UK

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Reply with quote  #92 
Her diagnosis at Huntercombe was anorexia sub type bulimia but very where else it's ednos.
Who cares when it's all messed up anyway and everyone is an individual experiencing ed in their own way.
Yes , she is exhausted.

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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  #93 
You are absolutely right, everyone does.i wasn't here 4 years ago so only knew about the bulimia sorry. Hopefully you get what you need from this assessment.your poor d is really being let down by services as are you, so hopefully slam are helpful
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ooKoo

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Reply with quote  #94 
Good luck with SLAM tomorrow, Nellie. 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  #95 
Leaving at 6:30am to drive to SLAM through the busy suburbs of south London at rush hour- UGHHH. I hope we get there on time.
Sat nav says it takes 2 hours!! Lol ! Maybe if we fly over the traffic!
D thinks London is small and that Oxford circus top shop is nearby!
Trying to get d to think about help she needs and not to pretend it's all easy and fine. Really hard.

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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  #96 
What I found worked was I was completely honest in meetings about how I felt.i also would disagree with my d in front of the professionals if she said everything was fine, pointing out all the abnormal behaviours she did.i had absolutely no fear of doing this,reasoning if they saw a meltdown,well hey I lived those every day, they neede to see what I was up against.in fact after a meltdown she would be more honest,too tired to lie then.contradict her and point out what you see. Fingers crossed you get what you need nelly
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Sotired42
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Reply with quote  #97 
Best wishes. I really relate to what you have previously said about it not being about the weight, but what is going on in your d's head. If the head is ED then so is the body. We have had similar issues with not being taken seriously because bloods were normal and weight not too scary, but the behaviours and the thoughts in her head were far from normal. We would have started treatment much earlier if people had only listened to me and not to her. We are still in the early days of all this, so I still really don't know what I'm talking about, but our d seems to be similar to yours, the same age, just not as far down the track. EDNOS, but seems to be both restricting and bulimic. Really hard because you try to feed them, yet have to lock everything away to avoid binge and purge.  Even at this early stage it does my head in!

I'm really hoping that they listen to you and do something to help. This is such a nasty, nasty disease and I hate it. Thinking about you!
NELLY_UK

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Reply with quote  #98 
Back from SLAM and exhausted but it seemed worthwhile. They absolutely got it they got her, they got us, they understood everything. How refreshing. I said we would rather see them less than see our lot regularly because the team don't have a scooby doo.
We were there for 4 hours so it was thorough. They did different blood tests to our lot. An ECG. Weight, height and other physical stuff. She has grown so she is more under weight than she was, but she has stopped vomiting, has grown and has not put on lots, which is what I was worried about. Now we may be dealing with just eating rather than BP with a lot of luck.
Wish we could see people like those from today who are specially trained and experienced in EDs.
How utter sh***e our clinicians are.
All of them.
Even the ones who claim to be interested in eating disorders.

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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.
Calm_USA

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Reply with quote  #99 
Oh Nelly, so happy to hear you finally have some medical help that gets it.  Here is hoping you are firmly on the road to recovery.  You must have two amazing arms from hanging onto your tether as long as you have! 

All kidding aside, I know it won't be easy upping the weight to compensate for the growth but with the new team and the stop in vomiting it really sounds positive.

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Mom of a 19 yr old. RAN diagnosed 1/2014. Residential, PHP, IOP. W/R since late summer 2014. Now in remission and thriving in her second year at university. My Faith remains.
NELLY_UK

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Reply with quote  #100 
Not sure if slam will be allowed to be our new team. They are there for another session and we would prefer someone with expertise.

All very positive today until....

D got dumped by long term bf who has helped her so much to stop purge ing. I guess holiday really laid it bare and he has taken flight. D is devastated scared panicky etc. We have all had our hearts broken.
Wish I could take her pain.
[frown]

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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.
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