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cjac16

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Reply with quote  #1 
My D was discharged from CAMHS back in October and has been doing really well leading a normal life until about a month ago.  She has sunk into a deep depression spending literally her whole day in bed and her anxiety has made it impossible for her to go to college.  She doesn't eat or drink during the day but gets up around 5pm(ish) and between then and 10pm(ish) eats all the food she would have had during the normal day.  She has not lost or gained any weight.  Got back in touch with CAMHS who organised an assessment at home (which took nearly three weeks).  She was then discussed as a priority case at their "allocation meeting" on Tuesday.  Yesterday they phoned me to say that she was on the waiting list which was currently six months long!!  When I informed them that actually she could be dead within the six months they have decided to have an other meeting (next Tuesday) to see whether it would be better to transfer her to adult talking therapies.  D is 18 in January and they think the wait is much shorter.  We were thinking of investigating some private sessions but it says you need to be referred by your GP.  If that is so would that mean that we would be taken off the NHS/CAMHS list?  I am totally appalled with the situation and just wondered whether anybody else has had similar problems.
Foodsupport_AUS

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Reply with quote  #2 
Sorry to hear that your D is so ill cjac. Sorry I can't answer to the specifics of how referrals or other treatments affects access to CAMHS. 

My D had severe depression and anxiety as part of her ED. If left to her own resources this is exactly what she would have done. I did find insisting on a good routine bed time, getting up, eating regularly etc.. did and does  have a modest benefit for her mood and her anxiety over and above that of her ED. Her go to now if she is starting to feel low is to make sure she has a good routine. She tends to use Melatonin to help her sleep too. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Kali

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Reply with quote  #3 
Hi cjac16,

So sorry your d. is deeply depressed and anxious.
Our d. has been on a low dose of a SSRI for the past year because she also suffered from serious depression and anxiety.

I'm not a dr. and can't explain the exact science behind this but the not eating (in your d's case she is fasting from 10pm until 5 pm the next day) affects the serotonin levels in the brain and can contribute to or intensify the depression.  

Can you and she consider changing her eating schedule so that the meals are more spaced out?
There was a period where my d. also slept a lot, and I would wake her at 9:30 for breakfast, 12:30 for lunch and 6-7 for dinner, make sure she ate and then I let her go back to sleep if she wanted until the next meal. 

Are you able to consult with a psychiatrist and see if a low dose of anti-depression/anxiety medication might help your d? The medication doesn't cure anorexia but it can take the edge off the depression and anxiety and make it a little easier for them to cope if it works properly and they are on the correct dosage. Talk therapy can also be helpful, and DBT and CBT.

Also, could there be something specific that set this off that you know of?

Best wishes,

Kali

 

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mjkz

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Reply with quote  #4 
As someone who has suffered from treatment resistant depression most of her life (ECT didn't even work), I can't stress enough the importance of keeping a regular schedule no matter how you feel.  Granted there were many days I got up, got dressed and sat on the couch spacing out but at least I was up and ate regularly.  It really sounds like she needs to be evaluated for meds more than therapy at this point.  Therapy is important but I'd do the med part first and then once she is on meds start looking for therapy.  Are there any local support groups (therapist led or even led by suffers) that she could go to?  You might need to take her to get her there but it is so worth it.  I had friends who got me out of the house at least three times a week even when I cried the whole time.  We would take short walks, get coffee, etc.  Just getting out had a huge effect on my mood.

If she is in college, there must be resources at the college she might access.  My daughter too suffers from depression and she actually had a therapist at her college and psychiatrist that she was able to access immediately while we sought longer term help off campus.  It is encouraging that she is continuing to eat even if it is the fashion you describe.  My daughter found just sitting outside getting sunlight helped (that may be rare where you are but still worth it).  I got us both a "happy light" which is full spectrum that we use in the winter and on gray days.  Anything you can find that will pull her out of herself and get her interested in something outside of herself will help enormously. I required my daughter to have a volunteer job at least twice a week when she was so deep in her depression and ED.  She worked with animals and they are so intuitive.  She didn't need to talk but just knowing that something depended on her to live helped pull her through. I have used the same kind of thing during my deepest depressions too.

The good news?  There is help and keeping a schedule, getting enough sleep (i.e. not too much or too little), taking meds, getting out as much as you can, and last but not least being gentle and kind to yourself can pull you through.  Like anorexia, it is easy to find yourself falling into blaming yourself for not being able to pull yourself together and get on with life.  Depression is a brain based illness as much as anorexia and not the suffer's fault.
cjac16

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Reply with quote  #5 
Thanks for all your help - it is much appreciated.  It is apparently CAMHS who would need to prescribe meds so I will have to contact them again and see if there is something they can do in this interim period.  Am trying to get her out of bed to eat at regular times but it is virtually impossible to get her even to open her eyes.  Will keep trying - we will not be defeated!
mjkz

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Reply with quote  #6 

Just out of curiosity, how do you know this is depression?  Has she been seen by her GP?  I'm just asking because I'd hate for any of us to write this up to depression when she has something like mono, EBV or CMV causing the sleeping all the time and inability to function.  It can be hard to tell especially if this happened suddenly.

cjac16

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Reply with quote  #7 
She has been assessed by GP and CAMHS and diagnoses with depression and anxiety. The anxiety has been around for a long time and was the reason she ended up sitting her GCSE's at our kitchen table. 
mjkz

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Reply with quote  #8 
Good. Glad to hear she has been assessed medically.  It just occurred to me yesterday that lots of things can look like depression, start suddenly and actually be something else.
melstevUK

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Reply with quote  #9 
cjac16,

Has your d been attending college all this year and do they know of her present situation?  Are there any supports they can put in place in the meantime?  

Has she given any indication of what has caused this decline?  Were assessments looming which have made her anxiety overtake everything again?

Will she open up with you and give any indication if there is any underlying issue which has provoked this response?  

Can you at least get her out of the house and into fresh air for any part of the day?

I agee with mjkz that if this is depression, structure is incredibly important.  But that may take a while to get back into place.  I hope your local services can help either with medication or other support.

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cjac16

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Reply with quote  #10 
D has been attending college all this year but not for the past month due to the anxiety relating to the final assessments.  She was doing so so well but it is always the written important things which set her off.  She is literally paralysed with anxiety and there is no way we could even get her to college.  College have been aware of the situation with the AN recovery right from the off and have been wonderful allowing her extensions for the work etc.  Once she had missed a week of college she could then not face going back period as it would be too "embarrassing" (her words, not mine).We now have to concentrate on getting her through this and worry about college later.   Looking at other options for September as she really wants to restart the course she was doing.   Today has been good so far.  Actually managed to get her up to have breakfast and she has remained downstairs all day so far (albeit dozing on the sofa).  Is now cooking her lunch which is a massive turnaround.  Told her that when she has eaten her mood does lift and that if she can manage to have breakfast, lunch and dinner at the right time it will help her.   Not sure we will get her out of the house today but baby steps have been taken today.  Of course, tomorrow could all go backwards but will continue.
tina72

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Reply with quote  #11 
Hi cjac 16,
thats great that you managed to get her up for breakfast! If you try to go on that way she will have a better mood soon. Our d´s mood always went down with her blood sugar level. Blood sugar is an important thing in recovery as the genetic problem of AN is compared with problems with blood sugar and lipid level. So if you can keep her blood sugar level constant, her mood will get better.
Don´t worry about college at that time. Health is more important. College will wait. Its not surprising that her anxiety says she cannot manage this. Her brain thoughts are not normal at this stage of the illness. It will get better with better nutrition. Try to continue. Till September is 2 months left and a lot of change can be seen.
You are on the right way! Don´t give up.
To get her out of the house: does she like dogs? Can you borrow one from a neighbor for a regularly walk?
Best wishes,
Tina72
cjac16

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Reply with quote  #12 
Well CAMHS came back to me after a second meeting to discuss her case.  They still say she is a priority case and that she would not be seen for treatment for at least six months so they are transferring her to adult talking therapies who should be quicker.  I asked what timescale we were looking at and was told they don't know but that adult services will be in touch.  That was on Tuesday and I have heard nothing. Was told that the ED symptoms would not put Phoebe in the priority category now so she would wait the same time regardless.  Was actually told by the NHS to go privately and then when space comes up to transfer her across to NHS - they clearly don't understand mental health as they would know that you cannot keep changing therapist and lose the trust your child has in a therapist.  I really do feel abandoned by our NHS.  D still won't move from her bed no matter we do to try and get her up.
mjkz

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Reply with quote  #13 
Quote:
Was actually told by the NHS to go privately and then when space comes up to transfer her across to NHS -


Is this an option?  I can see why you feel let down but maybe going privately to at least get her assessed for meds would be a good option.  Also I'd be calling adult services on a daily basis to see where she is in the line up and when they think they will be able to assess her.
cjac16

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Reply with quote  #14 
I think it is possibly the only option.  We will somehow have to gig things around to the find the money.  Now looking for a good CBT therapist which is not an easy task.  Will start to ring adult services as of today and will mention what has happened when I take d to doctor's appointment this afternoon.  Not that I have any problem with transgender or anything but cannot understand why the NHS are saying that womb transplants should be made available to transgender when they cannot even cope with the massive backlog of mental illness generally in the country.  I know of several people who have been on a waiting list for treatment for over a year.  Sorry, rant over.
melstevUK

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Reply with quote  #15 
cjac16,

I am a bit unclear - is your d being transferred to general adult pschiatric services for talking therapy - or is she being transferred to the adult eating disorder service?  If not, could she be seen more quickly be the adult eating disorder service?

Given that this is still part of the eating disorder illness, as proved by her inability to eat 'normally' - I fail to understand why she would not be seen by the adult eating disorder service a a priority because she has been under CAMHS previously.  I am not sure if they are failing to take the eating disorder into account and are looking to treat the depression alone - which will be made worse if her weight is still low.  

If all they are offering is adult psychiatric services - I would phone adult ed services and speak to them about the situation.  Have you weighed your d recently - can you be sure that she has not lost weight?

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Believe you can and you're halfway there.
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cjac16

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Reply with quote  #16 
D has been referred to Talking Therapies under general adult psychiatrics as a priority case.  Having spoken to our GP, "priority case" is actually third in line for help!!  As her weight is just above her target weight (weighed her on Saturday) she no longer qualifies to be referred back to the ED services under CAMHS.  She has been at this weight since October so is maintaining well.  She is eating enough food - just not in the normal manner.  I have told them repeatedly about the ED for which she has been through two years of treatment under CAMHS.  However, that doesn't seem to register with anybody.  Could be that D's whole team left when D was signed off!!  I get the feeling that they are trying to pass her from pillar to post at the moment.  I rang Adult Talking Therapies who told me that you have to self refer yourself as it proves you are committed to recovery.  I explained the situation saying that CAMHS had referred D but they said they could not tell me anything without my D's consent as this was adult services - she is still 17.  D was in the bath and would not come to the phone so will have to phone again tomorrow with her by my side.  D seems quite OK for me to discuss things with her permission which is good.  Talk about beating your head against a brick wall!!
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