WIBU to contact GP about DD(8)'s meltdowns?

[Jourdain11]

Probably a stupid thing to ask about on AIBU, but I genuinely don't know what to do for the best and I'm feeling a little desperate.

DD1 (8 year old) has recently developed OCD-like tendencies - tics and touching/tapping rituals and other things like going up and down stairs, going repeatedly to the toilet. I've been in touch with the GP about it by telephone and GP has referred to CAMHS, but obviously there will be a waiting list.

Over the last couple of weeks, her anxiety seems to have gone through the roof and no amount of reassurance seems to help. She is frequently going into what I can only describe as "meltdown mode" and it is obviously exhausting and distressing for her and upsetting for the rest of us. It seems like she completely loses control, screams and thrashes around, tries to hit her head off the wall and punches her legs and body.

I am worried about how much she how quickly it seems to have escalated and also the impact that it's having on her younger brother and sister, as it's impossible to completely protect them from it. She has always been such a level-headed, happy girl and it is so sad to see her in the grip of this.

I want to go back to the GP and maybe push for an "urgent" referral if such a thing exists, but DH is worried that this will freak out DD more and is concerned that ferrying her off to the GP may exacerbate things.

Does anyone have experience with this type of thing? Honestly, I just don't know what to do and I feel a bit despairing

Can you contact the psychologist who carried out the assessment?
Do you think she needs medication?
I don't know the setup in the UK whoever's made the CAMH's referral might be able to help.

Contact your GP and speak openly and frankly about her elevated anxieties. Even if there's very little they can do from a practical point, it'll be noted down.

If you're not already doing it, consider keeping a diary - it doesn't have to be pages each day, just notes about high and low level anxiety triggers and moods - it might offer a little more insight.

Realistically the CAMHs waiting list is ridiculously long - their services are hugely backlogged in our area (Warwickshire) and they probably are near you, too, but liaising with your GP isn't going to do any harm at all.

Are you and DH ok - do you need a break? If you do, can you ask your friends and family for help and support, and don't burn yourselves out.

It sounds like she is really struggling to cope with things. Has something significant happened to her recently that she simply can't process?

The recent OCD tendancies can manifest in children who have suffered something traumatic and cannot process it, so its a way of gaining control over certain things. I think you should definitely push for an urgent referral. Perhaps it is possible for you to visit the GP explaining it would not benefit DD being there in the appointment and you can describe everything going on with her? And as bad as it might sound, could you try to video her meltdown so as to show the GP to emphasise the urgency of it? Or is there anywhere private you can try if you have the funds?

She hasn't had an assessment yet - ordinarily I would have taken her to the GP, but we did it via telephone (firstly I spoke and then DD briefly) and the GP did the referral. We are waiting now for the assessment and not sure how much longer it would be after that for treatment (whatever may be recommended).

@FudgeBrownie2019

Contact your GP and speak openly and frankly about her elevated anxieties. Even if there's very little they can do from a practical point, it'll be noted down.

If you're not already doing it, consider keeping a diary - it doesn't have to be pages each day, just notes about high and low level anxiety triggers and moods - it might offer a little more insight.

Realistically the CAMHs waiting list is ridiculously long - their services are hugely backlogged in our area (Warwickshire) and they probably are near you, too, but liaising with your GP isn't going to do any harm at all.

Are you and DH ok - do you need a break? If you do, can you ask your friends and family for help and support, and don't burn yourselves out.

Thanks for this! I really would think about going private but I feel like we would need guidance on where to go, what kind of assessment to request. Perhaps it is something the GP can help with, so I will contact her again.

Thankfully we do have good support from friends and DH's family (mine live abroad), but I am terrified that lockdown will be reinstated and we will get cut off from all the sources of help that are currently available

What’s happened in her life recently? Has there been a family illness or bereavement? A falling out with her friends? Does she have overblown worries about what the virus is and what its impacts could be? Something will be at the bottom of this, try to find out what it might be.

You may want to have a look at Pans/ Pandas op, my friends child had this and the symptoms sounded very similar. Alot of Dr's havnt heard of it apparently x

I think her anxiety has been triggered by family illness, yes - and possibly worries about the virus. We have talked about things and up till recently, it seemed that she was reassured. But now she gets very agitated when we try to address her worries. It is as if she thinks that talking about them will make them more real...

Has she had tics or anything before the ocd started?

If the referral has already gone into CAMHs you can call them yourself, you don't have to go via the GP. Call CAMHS, explain that your DD is waiting for an assessment but that the situation has deteriorated. They are unlikely to re-prioritise her assessment as 'urgent' unless she is at immediate risk of harm or has psychotic symptoms but if you can speak to a duty worker they will be able to give you some advice as to how to manage her symptoms in the meantime and may be able to give you a rough idea of when she will be assessed.

Contact the GP firstly, they will make a referral to the appropriate person x

She didn't have any tics previously, no. She is kind of opening her mouth really wide and closing it and jerking her head back. It seems quite pronounced (to me) but maybe that's just because I'm becoming hyper aware!

Forgot to say, email her school (just email the office but ask for it to be forwarded to the SENCO) and let them know everything you've told us. They might be able to put counselling in place for her when she goes back in September so she has some support while she is waiting for treatment from CAMHS. The wait between assessment and CAMHS treatment is likely to be months rather than weeks so this is well worth doing.

My daughter is 8 years old. I had to remove her from school at 7 as it just wasn't working out, and she was an emotional wreck. School were very dismissive and GP wasn't that supportive either. However, the following worked for us. I got a private occupational therapy assessment which looked at all aspects of her behaviour and functioning. I also had a speech and language assessment at school (no major concerns about her language, but realised there was anxiety/ memory retrieval issues). I asked the speech therapist to refer directly to specialist clinics in the NHS. It took a year to get a firm diagnosis using private and NHS agencies. However, she is much better and so much happier now the right environment has been provided for her needs. I would explore SEN options with the school SENCO once schools open. It is not just for learning difficulties, but can encompass emotional and behavioural disorders as well. If you can afford a private assessment, please find a qualified psychologist or occupational therapist who can help you. Our report cost about £350 and has opened doors towards getting the right interventions in place. Please also consider applying for Disability Living Allowance as you don't need to have a firm diagnosis for that benefit, and it is not means-tested. You could use that money to access private sector services such as counselling - the NHS CAMHS agencies are overwhelmed and the threshold for accessing services is so high that I would go private if possible. There are many private sector paediatric consultants who specialise in mental health issues, and finding one could be the start towards getting a package of therapy together that works for your girl.

Oh, that's a great idea actually - thanks!

I'm worried about how school is going to go for her. She normally loves school but at the moment is quite clingy and gets very anxious and wound up very quickly. I'm also concerned that the frequent toileting will be an issue. She seems to need to go again and again and again and although a lot of it seems to be "just making sure", she won't be able to do it at school (from Y4 her school are quite strict on not going during lessons).

@scoobydoo1971

My daughter is 8 years old. I had to remove her from school at 7 as it just wasn't working out, and she was an emotional wreck. School were very dismissive and GP wasn't that supportive either. However, the following worked for us. I got a private occupational therapy assessment which looked at all aspects of her behaviour and functioning. I also had a speech and language assessment at school (no major concerns about her language, but realised there was anxiety/ memory retrieval issues). I asked the speech therapist to refer directly to specialist clinics in the NHS. It took a year to get a firm diagnosis using private and NHS agencies. However, she is much better and so much happier now the right environment has been provided for her needs. I would explore SEN options with the school SENCO once schools open. It is not just for learning difficulties, but can encompass emotional and behavioural disorders as well. If you can afford a private assessment, please find a qualified psychologist or occupational therapist who can help you. Our report cost about £350 and has opened doors towards getting the right interventions in place. Please also consider applying for Disability Living Allowance as you don't need to have a firm diagnosis for that benefit, and it is not means-tested. You could use that money to access private sector services such as counselling - the NHS CAMHS agencies are overwhelmed and the threshold for accessing services is so high that I would go private if possible. There are many private sector paediatric consultants who specialise in mental health issues, and finding one could be the start towards getting a package of therapy together that works for your girl.

This is very helpful too, thank you! I'm glad you managed to find a good way forward for your daughter.

You can contact the GP without taking your daughter. Phone CAMHS for advice as well maybe. In our area there are some mental health drop in type sessions with CAMHS for people on the waiting list. Maybe ask them if there is any provision while on the list. In my experience you just have to be a massive pain and keep chasing, chasing, chasing. School SENCO, CAMHS and GP.

It took us far too long to realise that you don't actually have to bring the child with you when you discuss their problems with the GP etc. You can have a much more open and frank discussion about her in her absence. The GP may want to see her briefly on a separate occasion which is OK but don't discuss any challenging behaviour in front of her - it will only make matters worse in our experience

Given the rapid onset of this, I was wondering, like a pp, if it’s a PANDAS presentation? Have you looked that up OP?

Yes, I have - and certain things do seem to fit, but at the same time, I don't think I'd say it was really a 24/48h onset as per the diagnostic criteria.

It has been, overall, quite a sudden and extreme change in behaviour though. She's gone from being a child who rarely got outwardly cross or upset about anything, to having these epic, exhausting meltdowns. I don't like to say "self harm" with an 8 year old, but that is essentially what she does (or tries to do).

I am hoping, really, that it isn't PANS/PANDAS since it sounds really full on and scary.

@Jourdain11

I think her anxiety has been triggered by family illness, yes - and possibly worries about the virus. We have talked about things and up till recently, it seemed that she was reassured. But now she gets very agitated when we try to address her worries. It is as if she thinks that talking about them will make them more real...

Have a look on Amazon for some CBT workbooks for children, sounds like they would be really helpful to work through with her.

Think Good, Feel Good and Starving the Anxiety Gremlin are often recommended.

My daughter was referred to camhs at age 6 for ocd behaviours and meltdowns.. I often felt her tics/ flare ups were linked to illness, she always seemed to tic post virally. It also tended to happen when I was very stressed (miscarriages etc) and when dp had to go to hospital urgently.

Anyway unfortunatley camhs took 6 months. They recommended a book called ' what to do when your brain gets stuck ' or something like that. We have worked through it s couple of times, it's great, an intro to CBT book. I learnt a lot from it too!

I also remember ringing the child psych team myself at my local London hospital as I knew they had a specialised team in ocd. They were great and I spoke to a psychologist with out a referral. She didn't need to see them but they advised me. Incidently she just grew out of it and has been a very mellow older child (So far - teenage years approaching..). All the best.

Please, video the behaviour. With us, it took showing CAMHS a video comparison of DS aged 7, and again aged 12 and then 16, doing exactly the same behaviour and saying the same phrases and doing exactly the same stims, in meltdown, before we were finally taken seriously. 🙄
He was finally diagnosed ASC and Dyspraxia and other LD, aged 16 after my raising concerns from when he was 4.

Evidence, video, diaries, go back to GP again and again, are your only hope

Thank you for the reading recommendations and other suggestions, I really appreciate it.

We just had another stressful bedtime... I just feel like we must be crappy parents to be honest. It doesn't feel right to allow her to just carry on with all these rituals, which are obviously very stressful for her, but the level of distress if one tries to stop her is too much And reassurance just doesn't seem to actually work!