Sudden onset of tics and severe school anxiety

[MissisBoote]

DD is 15 and has always had some level of anxiety about school but I didn't realise how bad it was till we started the first lockdown - she was so much happier not having to go in. Returning to school was difficult with panic attacks etc and I made contact with cahms to get her on the waiting list for CBT or any other therapy that may help.

She's also had some mild OCD over the last few years but this has really developed since August. Over a month ago after a particularly stressful experience at school she developed the sudden onset of classic tourettes presentation. A number of complex motor and verbal tics appeared overnight.

She's exhausted by the tics, exhausted from just going into school for 2 hours a day, reluctant to drop any subjects but doesn't have the capacity to catch up on missed work.

She's now on a PT timetable but school are pressuring her to do more hours at school. This week she's managed 5 hours in total. School don't see the impact that physically going into the classroom has on her.

She's taking her GCSE's this year but I can't see how she's going to be able to continue with the number of subjects that she's doing. I've already asked for her to be moved from triple science to double science. All but one of her options are coursework based due to covid19 changes. I'm desperately hoping exams are cancelled but can't even see how she's going to be able to get her head round starting revision for mocks that are taking place after Christmas.

I feel exhausted by it all. I can't see a way forward and just want the best way for her to get some GCSE's without us all having a completely mental breakdown. I don't really know what the solution is but just need to get it all out of my head.

What a worry OP. Am sure someone will be along with more detailed advice, but the first thing that struck me was the combination of OCD exacerbation and tics of sudden onset. Has your daughter been physically unwell during this time? It is a controversial diagnosis but it rings bells with me re PANDAS. Worth googling perhaps

Thanks @Puddlelane123 I'm just waiting to get her blood tests back to see if there's been any strep infection. The gp had never heard of pandas but I read about it shortly after her tics started.

I would see if the school can support her to access her lessons from home either via online live/recorded lessons or emailed work. If not can they arrange for an outside tutoring agency to support her at home. From next month schools will have access to the national tutoring programme specifically to help vulnerable students fill the gaps caused by COVID so please speak to them about this as well as reducing her subjects to focus only on her core subjects. If the pressure isn’t lifted then she could deteriorate further. Wishing you and her all the best.

Thank you @Bickleymumma
That's really good to know re: the national tutoring programme. I'll raise that with school.
Half of the problem is that she doesn't want to drop any subjects but I suspect her hand may be forced.

I thought I would drop you some

My y11 was developing anxiety prior to lockdown and collapsed soon into it, and has done more or less no education since, not returning to school this term.

I think you/she need to be pragmatic. What does she need for the next stage?
I have agreed with school that DD will only be entered for 4 GCSEs (had been on track to pass 8). They will be sufficient for her next course.

Improving MH and being ready and able to do what she wants at college are more important than a larger number of GCSEs.

Thank you @TeenPlusTwenties they are most welcome. for you too.

I'm sorry to hear that you've been going through the same. Part of the thing that makes it difficult is that three of her options are now coursework only and if she could do the work at home they'd be 'easy' GCSE's for her. But you're right - it's about being pragmatic and doing what gets her to the next level with the minimal impact on her mental health.

Luckily she's already got one GCSE as she did that last year, so she could, in theory just focus on double science, maths, English.

She's not really sure what she wants to do next year, but she'll need a minimum of five GCSEs.

I had a bit of a moment on Friday night where it all felt completely overwhelming but I feel a bit more on top of it now. Hopefully we'll have a meeting with school next week so will feel a bit less like we're drowning. I had a lovely chat with a friend who home educates and she's reassured me about no need to get hung up on 9 GCSE's.

Phew... It's bloody hard work parenting teens 😭😁

The coursework only does make It harder.
DD has had to drop Drama and Food Tech. Are any of the subjects ones she could do 'individually' if in school?

Is she looking at A levels or a BTEC? We had already decided DD would be better going in for her course at level 2 (even though she had been on track for the L3 course), and she only needs 4 GCSEs at grade 3 for that, and then she can do 3 years at college in total.

Obviously if your DD is looking at A levels she might have subject specific requirements to consider.

You could always try a full dose of ibruprofen for five days to see if it helps the ticcing. This would indicate PANS/PANDAS. Fwiw my ds tics stopped entirely after one day of anti-inflammatories. We are waiting to see a neurologist.

Oh and no evidence of strep for my ds BUT this indicates PANS and we will test for Lyme soon

Have you re-contacted CAMHS to ask how long the WL is and urge them to prioritise her?

Can you afford private therapy/assessment?

Have you considered an underlying neurodevelopmental condition that would predispose her to school anxiety, ocd, and tics - I'm thinking "high-functioning" autism?

Her tics are much reduced when she's at home and relaxed. She had hardly any over half term.

But then, anything that is remotely stressful that wouldn't register for a regular child causes the tics to start, such as deciding what to order in a cafe - anything where she feels out under pressure. Although randomly tonight she had a tic that made her stick her finger in her mash - it did make us all laugh though

She said her tics are much worse at school and she has had quite a few tic attacks there too.

I might give the ibuprofen a go - I was giving her ibuprofen when her tics started as one of them is a big neck tic and it was going off every minute so her neck was really sore.

We have a paediatrician appt this week so I'm going to mention PANDAS/pans - hopefully they'll have the results of her blood tests. @HumpreyCobblers - how long has your son had his tics for?

I have also suspected she may have high functioning autism. She's always been super sensitive to touch/sensations, sometimes takes things completely literally - you have to explain when you're joking. Doesn't like certain foods touching each other. She's always been cautious in social situations. As a younger child it took her ages to warm up at parties etc. Often mute if adults asked her direct questions.

We found that she liked routines, but then she struggles if there's variation in the routine. Likes to have advance notice of what's going on etc.

Her cahms keyworker is going to call me back this week as she's taking my daughter's details to the next case meeting so they may have a better idea of what they can offer.

That sounds good.

It does sound a lot like autism to me - but that's great because there is a lot that can be done to support her. I hope CAMHS can offer an assessment ASAP.

Ds has been ticcing since the beginning of lockdown until we did the trial of ibruprofen at the beginning of August. He is relatively tic free when on his five days but they come back with a vengeance within a day of stopping. Really hoping for antibiotics and /or steroids from the neurologist.

My ds sounds like your daughter, we thought it was Tourette’s, adhd, ocd etc caused by pandas, he also had severe anxiety. Well it ended up being ASD. He’s getting loads of help in school now which make it more bearable for him. I don’t know how he would cope with school otherwise. He’s very bright and very socialable and popular with his peers he just can’t really cope with school.

My 5 year old got terrible anxiety and started with tics both motor and verbal with the build up to last lockdown when they went back to school before the 6 weeks holiday they just went away like he'd never had them.. It was absolutely bizarre! With the new lockdown I caught him starting a new tic last week and he's anxious again and very emotional. He is under pediatrics but not diagnosed yet due to covid we can't go to the hospital at the moment.

@HumphreyCobblers have you joined the FB pandas group. There's a private doctor that everyone recommend. The general consensus is that NHS aren't great with pan/pandas.

That's interested @Trixiepixie6

I've just emailed my dad's cahms worker about asd.

I'm glad your son is now getting the help he needs.

DD's not dad's

@mrssalvatore14 hope your little boy is ok. It's such a worry. Does your hospital do video appointments?

Yes, thank you MissisBoote - it has been enormously helpful and we are seeing a doctor who lots of people the recommend. It really is such a brilliant support page.

We are with Camhs but went privately for an assessment. Where I come from Camhs just don’t work fast enough, 2 years later we are still at the same place with Camhs we’ve had no therapy just an ot and s&l assessment but no diagnosis Thankfully we have the private one or we’d still be in no mans land. Best of luck with everything x

@missisboote I'm Not sure how to quote or directly reply so I don't know if this will work but he is okay we can do zoom calls and the doctor at his community psychotherapist have their own link I'm more struggling to sort school out their SEN leader seems to be absolutely useless 🙄

Your daughter has a legal right to a full time, suitable education. I suggest you Google the name of your local authority and 'medical tuition'. This is a service for children who are too unwell to be in school,for example due to anxiety. Depending on your area, it may mean a tutor coming into the home or online learning. I would suggest you look up 'alternative provision' on the IPSEA website. Also have a read about EHCPs on the IPSEA website as you might want to apply for an EHC needs assessment.

@Sara2000 yes I've asked the school about alternate provision and they haven't responded.
All referrals to it have to come through the school.
I'll go and have a read up on ipsea - thank you