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Hendrixt Show full post »
teecee
Hello

my personal experience of CAMHS in the north of England (it varies from region to region) is that they were great in crisis but the follow up care was lacking in terms of long term support. Ours geared up early too to discharge us but I resisted for a time. 
I had promised of how we could just phone and we would be back in the loop so to speak but as suspected they were empty words. 
We went it alone (in terms of professionals) more or less after WR with plenty of support from this forum. I wish my NI contributions went here rather than there!!!
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Hendrixt
Aggie wrote:
Hi Hendrixt,
Sorry if I confused you - our ED nurse always pushed for steady weight gain, we never discussed when that should stop, were just encouraged to keep going. She's no longer with that team but her current psych is encouraging at least to hit average in the healthy weight range despite her slight build.


it sounds like you got a lot of support with your goal. When we went 0.1 kg over the lowest healthy weight figure out therapist was very anxious - almost as if the ED was affecting her. Maybe that particular nurse was out of line with CAHMS policy 
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Hendrixt
[QUOTE username=teecee userid=5859306 postid=1309645576]Hello

my personal experience of CAMHS in the north of England (it varies from region to region) is that they were great in crisis but the follow up care was lacking in terms of long term support. Ours geared up early too to discharge us but I resisted for a time......

IVe heard that the community teams are very good at reducing hospital admissions - I found a performance report online and reduction of hospital admissions was a key measure. I know a couple of parents who say they saved the lives of their ads. As you say though - they seem to be lacking in terms of getting a full recovery. Well done for going it alone. Must have been scary. 
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Scarlett81
Hi Hendrixt
You might have read from a previous post of mine that we're having a dreadful time with CAMHS ED team.
The lead psychiatrist told us to slow down after s finally added 1.5kg over 3 weeks.  2 months on and he now refuses to go to clinic appointments.  Can't say I blame him.  Mental health still so poor.  He cannot even talk about food yet and still has physical meltdown every time he eats.  And yet what did the therapist ask him at the last session, after he built up the courage to go in and get blind weighed?  'Tell me how you think it would feel if I asked you to eat a biscuit."
Really???!!! He freaked out and hasn't been since.  She's already pushing for some independent choices even though he is at least 8kg off where he should be.  We're lucky in one way, due to another long term medical condition I have his growth charts from age 2 to 15.  So they have no option but to accept where he should be on that growth chart!
Big big row with h tonight which ended up with us realising the total lack of support is holding us back.  We're thinking of doing it on our own.  When I call them all I get is "yes you could try that."  No ideas, no direction. It's so frustrating!
Sorry to rant but given that this is one of the most high profile mental health issues I was hoping for much better support.
My worry about doing it ourselves is that therapy, once s can engage, will be needed and we're not in a position to pay privately   but... is no therapy better than bad therapy?  And can't we, as parents, offer some level of therapy?
Good luck on your journey Hendrixt.  AN will make warriors of all of us!
Xxx
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freedomfighter
Hi Scarlett81, what a typical scenario with CAMHS ed treatment.  H was great about it when we wIere considering pulling away from them.  What are they actually giving us? he asked.  He had a healthily low view of what they were offering us.  I was still  Stepping away from CAHMS was very very helpful for us.  Getting D even to the appointments was a massive struggle and then she wouldn't engage at all, except when they suggested we were being over-controlling in requiring her to eat...It removed a huge source of anxiety and left us with the main event - the ED, which needed food and love. and resilience (and anti-depressants for me!)  It could be that your son will never engage in therapy (our D still hasn't, in strong recovery for over a year - I wish she would but she won't even talk about the ED).  I don't think this is unusual though.  Plus, if you want to go back to CAMHS in the future you still can.  And no therapy is FAR better than bad therapy.
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EASL
Hendrixt:
You may be overwhelmed with information at this point - but here's a bit more. At about 4 months into treatment with my daughter I decided to shed my 'fears' of looking bossy both with CAMHS and my daughter and I just had 'edicts' that were non-challengeable - mostly delivered calmly and with love - but not always I'm sad to report.

To CAMHS - I told them we were not looking at a weight target full-stop as when asked they were honest and said her weight would fluctuate over the next 10 years of her life so really a weight target is at best an educated guess. So I set a 'floor' - my daughter needed to reach this floor to go on a school trip she wanted to attend and CAMHS was going to help us get there - it was 3kg above their target. We are now 3 kg above that with no intention of stopping.

I think it is important to ensure your CAMHS team helps you with W/R but ALSO with all the emotional issues that caused the problem to begin with. Our family therapist used the iceberg metaphor - when you've hit W/R you've tackled the bit of the iceberg above the water that you can see - not the huge bit underneath. If you continue to remind them of ED eating behaviours, anxiety/depression or any other emotional issues you might see in your D - then they have to keep working with you.

I'm sorry its been so difficult but as many have said here - trust your gut - and keep fighting them to do what's right for your D - although they have lots of experience with ED they have less experience with your D than you. 
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Hendrixt
[QUOTE username=Scarlett81 userid=6691451 postid=1309662725]Hi Hendrixt
You might have read from a previous post of mine that we're having a dreadful time with CAMHS ED team.......

Hi Scarlett. It sounds like a terrible time you’ve been having. 1.5 kg over three weeks doesn’t seem too much of a gain so you would’ve been gutted to be told to slow it down. We are in the same boat with the lack of engagement, our D is refusing to go to appointments, at the last appointment she locked her self in the toilet in the clinic and was in there for quarter of an hour - it was a right palaver.

I am feeling the same as you about the push  for things like independent choices at a stage which feels too early. It’s unbelievable in your case when he is over 8 kg off a healthy weight.

It’s lucky you’ve got his growth charts we haven’t got anything at all. You’re not the only one who has been planning to do it on your own I’ve spoke to a few people who have done that. We are considering it as well with the way things are going it’s just that it feels like you’re burning your bridges and it’s a bit scary I suppose. I hope it all works out for you, I really do it’s awful when you’re battling against services as well as the ED
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Hendrixt
[QUOTE username=freedomfighter userid=5792992 postid=1309663819]Hi Scarlett81, what a typical scenario with CAMHS ed treatment.  H was great about it when we wIere considering pulling away from them.  What are they actually giving us? .......................


Hi freedomfighter,

This is the way that we are looking at it. Looking back over the last few months we have achieved so much but when we think about it we cannot identify anything which we have done as a result of advice or support from the therapist - it’s nearly all of the case of “well what do you think” and “that’s a good idea” etc. The only time that we got any firm advice was when we were being told to slow down the weight gain and this advice was very strong and I don’t think it was very good advice.

How can they say you were being over controlling in requiring her to eat, that’s the whole idea of refeeding - you have to be controlling in order to do that!!.
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Hendrixt
[QUOTE username=EASL userid=6540023 postid=1309672026]Hendrixt:
You may be overwhelmed with information at this point - but here's a bit more. At about 4 months into treatment with my daughter I decided to shed my 'fears' of looking bossy both with CAMHS and my daughter and I just had 'edicts' that were non-challengeable - mostly delivered calmly and with love - but not always I'm sad to report.

To CAMHS - I told them we were not looking at a weight target full-stop as when asked they were honest and said her weight would fluctuate over the next 10 years of her life so really a weight target is at best'......................

Hi easl,

Well that’s really pretty but you’ve done. Very impressed with the idea of setting the lowest weight and being so firm about it, I but it was heavily resisted by cams being 3 kg above her weight. Our therapist goes into panic when we go as little as a couple of pounds over her lowest healthy weight so good on you and keep going if you can do it.

The iceberg metaphor is very relevant it’s a good way that playing in it thanks for the encouragement and I hope all goes well with yourselves. Take care
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