I am revisiting this thread to update everyone with our story. It has a happy ending (at least to now, fingers crossed) but we have been to hell and back. I am posting to give info (and warning) to those who are considering putting their teen on fluorextine.
To summarise, just over a year ago, my dd shortly after her 16th birthday was put on 10mg of fluorextine after around 6 months of us dithering, with worries about possible side effects. She was primarily suffering from anxiety but there was also some depression there too. There was considerable pressure from CAMHS as they said it may help with the talking therapies they were giving. The dose was upped to the standard 20mg after about 3 months.
We did not see much improvement with her general anxiety and depression (she was taking her GCSEs at the time) after starting the medication. There was possibly some lifting of her mood but not that obvious. What did start (although we didn't realise it at the time) were episodes of erratic behaviour centred around suicidal ideation and more intense and frequent self-cutting. For example the day of her last GCSE when she and her friends were 'celebrating', my dd disappeared. We searched high and low after she made some wierd and creepy calls. My dh and I really thought she may be at the top of a high building getting ready to jump. In fact she was at home in bed, but wanted us to think otherwise.
This was the start of around 8 months of a nightmare time when she seemed frequently at the end of her tether (and we were too). She stopped attending school regularly, ended up in A&E (a dismal night where she spent hours being interviewed by psychiatrists, watched over by security guards and sent home after they couldn't find a femaie driver to take her to a in-patient facility 40 miles away), frequent bouts of self-harm, huge weight gain (as she barely got out of bed but comfort-ate as she thought it helped), insomnia, and these wierd suicidal episodes where she seemed to be reaching out to me in scary and incomprehensible ways.
Quite often after several days of calm she would suddenly do something which jolted us back to reality. I did not go out as it didn't feel safe to leave her on her own (even during the day). It was truly awful.
During this entire time I was giving her the daily dose of fluorextine and she was seeing therapists in CAMHS regularly.
One day around 4 months ago dd confessed to her therapist that she was hoarding the fluorextine capsules and had been doing for ages with a hoard of about 30. Some capsules she took with me watching but others that I left her to take she had just pocketed. A real wake up call for me and CAMHS called an emergency crisis meeting.
CAMHS's response was to take her off the fluorextine straight away. I protested saying that although dd didn't like taking it and we weren't convinced of its effectiveness, I thought just taking her off the medication suddenly when she was far from well was too drastic. I also asked them their views on the acute negative effect that the medication might be having (suicidal ideation) on my dd. They denied that the medication was the cause even though it seems that the effectiveness of fluorextine on teens are not proven.
Eventually we agreed that she will have a phased withdrawal. That was in mid-Feb. It has not been dramatic but since then dd has steadily improved. She has bit by bit got herself together. Her school attendance remained quite erratic but she did enough to sit all her AS exams (something that 5 months ago would have been in our dreams). She has joined the gym and goes there with her friend. She has lost some weight and has started to control her terrible diet. She still has trouble sleeping at night but generally is more active and will join us downstairs and will join in family activities. It seems that she has stopped cutting. It's as if she has woken up from a terrible nightmare.
She still has a long way to go to be 'normal' whatever that is but after several months of sustained improvement, we are cautiously hopeful that she will get there in the end.
As for CAMHS, my faith in them have been severely dented. They were quick to sign her off straight after she came off the fluorextine (well before she showed any sustained improvement). DD is now on a 'therapy holiday' which basically means that she will only be re-admitted if she has a severe reoccurance of her troubles. She still has on-going issues with anxiety but she is not able to get treatment for that at all. I have repeatedly asked CAMHS for their view of the role of her medication in her illness, the fact that there seemed to be a clear correlation between those time when she was the worst and when she was only sporadically taking her medication. They deny any connection but any quick google will show warnings of coming off medication quickly. I think the fact that they were so keen for her to come off fluorextine speaks volumes.