Experience based advice please - DD14 awaiting CAMHS, in limbo

[Randomeemoh]

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DD has autistic traits - black and white thinking, at times very withdrawn and emotionless, not wanting to talk about feelings, disliking / pulling away from physical touch.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

Can’t comment on the “standard” pathway as my dd in a similar situation was referred to Camhs but never seen even for assessment.

we got her seen privately to look for physical issues and possible arthritis was found which was then treated but didn’t help with the fatigue so other options were explored.

she was out of school for two years in the end.

nhs CFS/ME services accepted a referral as she was out of school due to severe fatigue (at one point nearly bed bound). They helped a bit with discussing stuff with her.

two years in she was found to have a thyroid problem - hashimotos thyroiditis. She was referred to thyroid specialist and is now on medication and will be for life.

the fatigue and MH issues have abated somewhat and she’s had (private) CBT for chronic pain and fatigue and also private therapy.

the presence of fatigue would tend to suggest there is something physical going on here which is driving her self harm and dissociation. My dd was very similar and self harmed a lot as she felt she was not keeping up with her peers and was falling behind.

there are many many physical causes of such things that blood tests just don’t pick up. We only picked up the thyroid because my dd happened to have two lots of blood tests because the CFS/ME people demanded a second set and one of the thyroid ones was off.

gp initially assumed it was an error but actually hashimotos goes in flares and a single normal result doesn’t rule it out. A third test confirmed the abnormal result.

@Octavia64 thank you for replying. I’m very sorry you and your DD have been through this, and hope the medication she takes works well. My DD has had three sets of blood tests done, including recently when symptoms worsened. But I go think seeing a specialist in CFS/ME could help, especially with support coping with the fatigue.

may is ask, whether your DD managed to complete any education she missed, and how she has dealt with that?

I hope all goes well for you, DD and your family.

As someone who works in CAMHS, yes that sounds pretty standard.

At the 7 day follow up with the crisis team (assuming they are the crisis team but may vary in different areas), I would ask them to refer your DD on for an assessment with the local CAMHS team. Ask them what the process is and if they can do the referral internally. Be specific about what the mental health need is for your DD and what you think she needs help with i.e. anxiety, self harm or depression.

It does sound like a neurodevelopment assessment would also be helpful to explore autism and ADHD. Again, ask what the process is for this.

Regarding the educational and family support, find the contact details for your local team and chase up what's happening.

Do you do pacing with her?
https://children.movebettergwent.nhs.wales/self_management/pacing/

Music and Imagery therapy can help children to get in touch with their feelings and improve emotional regulation. https://wema.org.uk/supportive-music-and-imagery/ It is not as demanding as some other types of therapy, which in your circumstances might be helpful.

While you are waiting, New Harbinger workbooks are very good. There is entire series, this is just one of them https://www.amazon.co.uk/Resilience-Workbook-Teens-Activities-Confidence/dp/168403292X

It can take local authorities a long time to organise alternative provision. It is best to be on their back about this. In theory the have two weeks, I think. In practice it can take forever. I would have a think about what you want to try to get that for your daughter:
https://www.ipsea.org.uk/asking-the-local-authority-to-arrange-alternative-education-model-letter-22

Yes my dd got GCSEs but dropped out of a levels.

she never completed a levels but went back into education - the first year she did a part time catering course as for pacing reasons going straight into full time wasn’t a good idea.

then she did an acess course and from there went to Newcastle to study physics. She now has a physics degree.

Thank you very much for this information. None of this has been signposted to us so far, so I really appreciate it.

Thank you for sharing this @Octavia64 , What an incredible achievement - I hope your DD is really proud of herself.

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.
Hi, sorry this sounds tough to witness and live with for you all. Off the cuff thoughts:
1: Has POTS been looked into? If not consider this for the fatigue/dizziness. You can test by doing sit to stand HR tests? If her heart rate significantly rises after standing this might be part of it? (research online into this). Adding salt /electrolytes can help with this.
2; Pandas? Research this. Can have psychological impact that can affect mental health as well as physical health inducing anxiety/self harm/dissociation /fatigue all sorts. I think this needs an MRI to rule out though.
3, Autism as mentioned and poss ADHD - she could be in burnout? You can try getting a quicker autism assessment via Right to Choose? Waitslists aren't nearly as long. Fatigue Dizziness and Dissociation may be as a result of sensory and emotional overwhelm. SH is also common with autism as well as anxiety /depression esp with the perfectionist/black and white thinking cognitive traits
4 Can you think of things you can do with her to help her/encourage her that might be therapeutic? Could you go for some walks together? Could you do some meditation using an online class session together or practice some breathing exercises or do some gental yoga or tai chi online together at home? Maybe set a regular time a couple of times a day to spend 20 mins or so practicing breathwork/meditation to learn some regulation skills?
Could you both do a therapeutic activity together that is creative whether it be creative - from colouring in books to knitting/crochet, baking something? Maybe plant some seeds and make an indoor garden or something to tend to? Can you encourage her to set some journaling time aside to express her feelings without having to talk or share? Maybe at the end of the day you could both also practice a gratitude moment where at the end of each day she has to list three things she is grateful for, three things that added a glimmer to her day - this could be the ice cold drink or the hot cuppa or the cosy blanket or watching her dog/cat play or enjoyng a moment of a book/tv show or the smell of the toast - or the bubbles in a bath or the smell of a perfume spritz...doesn't matter what it is but it is good to make her stop and find something, no matter how small that is positive and to keep a record of those positives - she might find it teaches her what helps and the neurofeedback of naming out loud what has gone well, what has brought comfort or a spark of happiness or positivity is good for the brain. If you can encourage her to do some movement every day a few times a day it will help enormously especially one with bi lateral movement that helps to calm and to process - a walk around the block? Does she have a therapist? Can you afford to find one privately whilst you wait?

A few more ideas:

For the neurodivergence diagnosis, has https://londonwaitingroom.nhs.uk/ been suggested to you?

How severe is her dissociation? Does she become unresponsive? If yes, touching ice cubes or putting a drop of lemon juice on her lips might help.

Paced breathing can be a very helpful regulation tool. There is a lots of apps, eg. Paced Breathing.

Sleep is very important. If that is a problem, look into "sleep hygiene". share.google/9nupl69SxFIRJNbut

I would apply for an EHCP for her. Part of that is an assessment by an educational psychologist, which might be helpful. Find out about special schools in your area. Maybe your daughter could start with some tutoring at home, then go to a small special school for some time and then possibly transition back into mainstream, depending on how things go. Make sure to keep a record of everything that is happening and keep all the letters and reports you are getting. If she fills in questionnaires, keep the raw scores. LA's like those when deciding on EHCPs. Ask her former school for evidence too. If I remember correctly, SENDIAS has good information on how to fill in an EHCP.

https://www.skylarks.charity/ offer parent consultations which can be very helpful. They are London based, but anyone can contact and join them.

An urgent CAMHS appointment is usually independent of neurodiversity assessments. For an autism assessment, she will be put on a waitlist which will be long. The urgent appointment could be just about trying to figure out how to help her handle her acute crisis, eg. by prescribing medication.

I will send you a PM.

Hi OP. So sorry you and DD are going through this. I know how frightening it is and how helpless you feel.

Some but not all of this sounds like my DD's experience: extreme fatigue, dizziness, sleep troubles, out of school. She was in autistic burnout, now diagnosed autism and ADHD. We diagnosed privately - we were desperate.

The detachment and losing sense of self you report does not chime with our experience.

One piece of advice I can give is to start a timeline where you set out what's happening, what the interventions have been, any meds etc. Record it all. This has been really helpful in getting CAHMS / GP /local authority to understand the situation.

When you find one helpful person, like your GP, hang on to them: getting help for us has been contingent on building relationships with helpful people.

Melatonin helped significantly with sleep.

Finally, when DD was in the worst of it, one CAMHS psychiatrist said to us not to worry about school: we should focus on her health first. A real lightbulb moment for me.

She ended up in hospital school (referred by school), with CAMHs and has private therapy. We are now starting the EHCP process.

All this is admin-intensive at a very hard time. I would honestly focus on one thing at a time: what is the goal for right now? Maybe don't try to do the EHCP at the same time as you are needing to badger CAHMs / primary care/ organise assessment?

Again, I am so sorry you are going through this. Come and vent any time you need to.

Thank you @FMLpassthegin (great name, I can relate!)
She has been tested for POTS and although not present has also followed advice to mitigate (lots of water, compression stockings), to no avail.

The CAMHS nurse advised her to follow the 54321 approach when she feels disassociated, which I think will help.

As for exercise and gratitude - she is either unresponsive, resistant or even visibly distressed if I make suggestions like this (even really really gentle and tiny ones, like a walk into the garden). Probably if she can see a therapist she will listen to them more.

thank you for your help.

@Ginflinger thank you for this thoughtful response, this is really good advice.

I’ve been in touch with CAMHS. After 4 weeks they have done nothing - she is still stuck with the screening team. I will keep pushing as I do worry the private CAMHS route will be less co ordinated…..but we will start to pursue that as well.

does anyone have experience or advice regarding co ordinating between private CAMHS and other agencies (GP, adolescent services, school)?

They will write letters to each other. There is no holistic approach. Chase everything, particularly referrals.

If there is ever a whole team meeting make sure there is a clear agenda. Contact all parties before the meeting and make sure they bring up-to-date information (eg. teachers feedback) and that you know what you want to get out of the meeting. Professionals tends to look at their own plate, so it is best to agree on some goals everyone will work towards.

Personally, I upload all information to patientsknowbest. Like that, it is all in one place. If my husband goes to appointments, he also has access to the needed information. Different hospitals have different apps and you will end up frantically searching for information in meetings if you don't have it in one place.

@onlytherain thanks for the excellent advice.

We saw CAMHS yesterday for crisis follow up. They have recommended to proceed with a combined autism and ADHD assessment. DD has also indicated that she wants to do this. We will do it privately so we don’t have to wait as long. CAMHS have also referred her for more generalised MH/learning support and will join up with early intervention regarding education and getting out of the house. So there’s some forward movement, at least for now.

The pathway is standard. You may be waiting a very long time for CAMHS support. If you can pay for private help I would recommend that, speaking as a social worker.

Agree with @onlytherain about record-keeping and the need to constantly, politely, persistently chase and advocate. None of the services properly communicate.

We were waitlisted by CAHMs initially. It took sending a scan of a page of DDs diary to be bumped up the list: so being direct and using all resources and being imaginative helped us to move forward with CAMHS. Then we had very poor service from them for a long time until by pure luck we were allocated an excellent psychiatrist who got things moving better. This took a year.

What struck me is that after private diagnosis, nothing changed. Diagnosing psychiatrist made all these recommendations about occupational therapy, speech and language therapy etc, none of which were realised either by the school or CAMHS. Long waitlists for everything. We have had to push and argue and persist and advocate for everything.

I wonder if we'd chosen the private route from the off rather than CAMHs we would have got further. However by the time we were considering this, DD was in crisis and the private child psychiatrist services we tried would not take her on, as they could not offer proper crisis care.

My advice thinking back would be to start checking out private services now. The best ones will have waitlists, so you might find that when they have capacity to take on your child properly CAHMs will either have stepped up or not, and you could decide from there?

Sorry @Randomeemoh for a rambling post. I'm also sorry if the lengths of time I'm describing here are upsetting: I remember being horrified when people talked about being in this situation for years. This of course might not be your experience at all. Well done for getting things moving.

Thank you for your openness @Ginflinger and no apologies necessary - it’s better to know from the outset what we are dealing with. I had a feeling it might not be so straightforward to proceed privately, especially while in crisis…..I’m crossing everything that the psychologist I’m speaking with tomorrow will take her on.

It sounds like the physical symptoms should be the primary focus, tbh, it must be terrifying for her. The MH issues are a natural response to such a life changing event, especially when you're still figuring out who you are.

It sounds like she has a mix of the symptoms my 14yo ND DD and I had post-covid. As my DD has ASD, these kind of struggles took more out of her, but fixing the physical things (which for her were crystals in her ears and labyrinthitis causing dizziness and nausea) gave her the capacity to overcome everything else.

My long COVID symptoms were not detectable by tests but very neurological. If you've ever been in shock or had hypothermia, that's what happened to my brain. I had a lot of dissociation and I can imagine, if I was younger, taken less seriously medically and more powerless, I'd have self harmed to feel real again. I was "lucky" that I also had a physical symptom and the treatment for that fixed my brain as well (although for the second year I still couldn't regulate my body temp and the fog would come down when I got cold).

My colleagues son had very similar to both me and your DD and he found a low histimine diet made a huge difference. She is in medical research and thinks we are both under the MCAS umbrella, so it might be worth looking at that. Everything you try is part of the puzzle, it will also give your DD a sense of control.

Best of luck, you sound a wonderful mother and your DD very strong. You'll get through it.

Thank you @SueKeeper I do feel that CAMHS are attributing everything to potential/probable ASD…..and we will need to keep reminding everyone that she had physical symptoms first. I hope that your and your DDs journey is going well and keeps improving x

In my experience, they will assess and discharge with a few leaflet and try to refer to a level 1 service who can’t do anything because the level of risk is too high.

This is how CAMHS deal with mental health symptoms in young people with traits of ND. They put them on the assessment pathway which can take years and do nothing else. I don't blame the services for this, they literally don't have resources to support all the children who need it.

Call LEA identify the named LEA officer for children missing school.this person was key for dd. She spent year 8 to 9 in small group setting 2x week then hospital school as day pupil (they have relocated a provision away from the hospitalfor teenagers who can leave or are not under hospital) . She did notmiss out from focusing on key gcses only i.e english maths science art and completed a levels in a repeated yr 13 and now doing OU degree part time. Dont worry about education she will get there.

Re co-ordination

any private practitioner will send letters to your gp to keep them informed.

co-ordination with school is complicated but you can contact the Senco and let them know about any diagnoses. Most medical letters come by email now so can be easily forwarded on.

Any recommendations for eg OT or speech and language assume you will need to organise yourself and access private. Many people have others they can recommend.

I'm in Sussex, which i discovered last week is rated 59/61 NHS trusts for mental health so I hope you have a much better experience ....

But it was 11 months from referral to assessment by a mental health nurse, not even psychiatrist. Took another 6 months of escalating behaviour before she was seen by a psychiatrist, by which point she was 17.5 so they essentially "supported" her until she aged out.

No therapeutic intervention by CAMHS at all in 3 years.

Now under adult services and currently awaiting an inpatient bed after being sectioned.

If you can, find a private service that has psychiatrists and psychologists. You want a multidisclinary team to ensure a coordinated approach.

Also look into Pans/Pandas especially because of the fatigue. It wasn't relevant to us, DD had shown autism traits for a long time, it just took until crisis to be diagnosed.

Don't worry about education at this stage, other than involving the attendance officer so you dont get fined. You can apply for an EHCP once she's more stable and that will give her until she's 25 to complete level 3 education (A levels or equivalent) funded.

@WhatsitWiggle im so sorry for your and DDs experience.

i asked CAMHS at the follow up when her full assessment would be. They said it’s been done (ie at the hospital)…..to be fair it was a good 90 minutes, but with a nurse not a psychologist / psychiatrist. So we start today with the hunt for the private option.