I would really appreciate hearing your experienced-based advice regarding my DD14 - thoughts on our experience so far, and whether/what we should do to put a diagnosis and treatment plan in place.
Summary (but rather long) coming up:
DD has suffered with fatigue, dizziness and disassociation for 2 years. Tests (bloods, ECG, neurological) showed no particular cause. Psychiatrist saw her (online) last year, and concluded no psychiatric cause - potentially post viral, but basically no one can explain it. She has for the past year found it hard to concentrate at school. School and initial Ed psych have not attributed this to anything.
DD has autistic traits - black and white thinking, at times very withdrawn and emotionless, not wanting to talk about feelings, disliking / pulling away from physical touch. She has not wanted to explore a diagnosis (yet), but is realising that this may be helpful.
Since May her fatigue and mental state worsened significantly. She has not attended school since half term, initially because of exhaustion, but within a few days it became apparent that she was feeling much more detached and losing her sense of self. She has spoken of not feeling safe.
For the most part she spends her days in bed/in her room; she doesn’t really do anything, other than listen to music, watch a bit of TV or read;manages to eat a few times a day downstairs; cannot leave the house without becoming extremely anxious. She usually showers and brushes her teeth.
She has been seeing our GP weekly, who (with school) referred her to CAMHS (4 weeks ago).
I received a call the following week from children’s (social) services, who said they would recommend some support for her (educational and family support). They did not leave a number and have not been back in touch.
CAMHS sent a signposting letter - but no indication of time to assessment.
At the weekend she had a major breakdown - incoherent, hurting herself, and begging for help. She went to A and E, was seen by a doctor, told him she had self harmed, and was admitted overnight. She remained very unsettled but managed to sleep.
Next day a nurse from CAMHS spoke with her for an hour and a half. The nurse, DD and we devised and signed a safety plan (what to do if she feels she is going to harm herself, removing sharp / dangerous objects). She was discharged (with her agreement) and have a follow up in 7 days (but not an assessment)
Given how prolonged this is, her distress, inability to function beyond the most basic of activities, and currently not being able to attend school, I believe we need to now get on with the assessment and a path to support, treatment, and a route back to education (with adaptations as needed even if that means at home). Basically, she needs, and wants, a plan.
I would really appreciate any thoughts on
- whether the pathway so far sounds ‘standard’
- how we get from her to an assessment and a plan for support and treatment
thank you