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Original poster

DD has developed a tic

29 replies

Shortysoso · 02/02/2021 10:54

DD(15) has developed a tic. Her tics are quite large and noticeable, e.g., flinging an arm out, a particular roll of the head with a shoulder shrug, clapping.

I don't know how to best support her and have read what I can, and understand we need to manage stress and anxiety, get enough sleep, not focus on the tics, that sort of thing but she was bad over the weekend and yesterday and I can see it is stopping her seeing her friends (the tics are particularly bad on zoom).

She has other health issues and did have a therapist but she recently left the country and decided not to come back during lockdown so zoom is the only option now which is one of the things DD is struggling with.

The school have been great but I'm worried for her. If anyone has any experience, wise words or recommendations for resources, activities or anything that might help, I'd love to hear them.

OP posts:
AIMD · 02/02/2021 12:40

Have you considered PANDAS as an issue. I know it might not be that but I thought I’d mention it as I know a few people where TICS appeared to be linked to it.

Original poster
Shortysoso · 02/02/2021 13:07

Hmm, no I hadn't really considered it as I was thinking of lockdown, online learning etc but it is true that DD was unwell with something before Christmas. Tics started two weeks ago. So she was unwell two weeks before Christmas and started tic-ing two weeks after - does that sound like PANDAS?

I just contacted her therapist, who, it appears, has decided to relocate permanently. DD has been seeing her for years. I could weep.

OP posts:
HumphreyCobblers · 02/02/2021 13:11

It could well be PANDAS. Have a look at the criteria. Also you could try full dose of ibruprofen for five days and see if situation improves - if it does then that is indicative of PANDAS or PANS.

AIMD · 02/02/2021 13:16

There is a really good pandas Facebook group. Might be worth going there and asking for advice/opinions. Pandas is a little controversial in the sense that not all drs recognise it but if you take time to read it absolute make sense that infections could have these types of symptoms.

I agree with trying ibruprofen for a few days (provided there’s no health issues it could affect). When my son had a big behaviour change all of a sudden I gave him ibruprofen for a few days and did see an improvement in the behaviour. Obviously I couldn’t continue to give him ibruprofen but it was an indication of what the cause might be.

Anyway it’s worth giving pandas some more thought even if only to rule that out as a cause.

I hope you find something that helps, it must be hard for you and your daughter.

HumphreyCobblers · 02/02/2021 13:48

There does not seem the same resistance to recognising that children can suffer from long covid with neurological type symptoms - I think that this could change the attitude of many doctors towards PANS/PANDAS.

My child’s tics stopped overnight with ibruprofen.

Original poster
Shortysoso · 02/02/2021 14:54

what were the tics like HumphreyCobblers - if you don't mind my asking?
DDs seem very different to the St Vitus' dance type movement but I'm new to tics so am being educated!

Thanks all for your advice so far.

It would be great if ibuprofen did help but it's also possible these are tics brought on by lockdown stress and bother - I wonder if any other children or teens are experiencing similar?
At this stage even feeling less alone is a help so thank you for taking the time to share your thoughts.

OP posts:
Original poster
Shortysoso · 02/02/2021 14:56

PS DD tested negative but she was very unwell so I contacted the GP who was of the opinion that a negative test doesn't mean it wasn't covid - although it could have been another virus.

OP posts:
HumphreyCobblers · 02/02/2021 15:10

He had vocal tics , a kind of constant hooting noise and his face would spasm, he would stretch out his arms and clench his fists.

I imagine it could be stress of course, but defiant worth giving ibruprofen a go. What have you got to lose? Make sure it is given with food and a drink

Original poster
Shortysoso · 02/02/2021 15:28

Thanks HC, she's had her first dose - as you say, what's to lose at this stage? she'd had lunch so had a glass of milk and a biscuit (for once a biscuit was my idea, lol) and then the tablets.

I'll let you know!

OP posts:
HumphreyCobblers · 02/02/2021 15:36

Good luck- hopefully whatever the cause it will resolve quickly

Rupertpenrysmistress · 02/02/2021 16:17

Hi op my son has recently been diagnosed with Sydenhams chorea this is a form of rheumatic fever. This was traced back to a strep a infection he has in October last year. He was very unwell and had a covid test which was negative. My son's symptoms are similar to that horrible Saint vitius dance (I hate those videos). My son has a head CT and MRI which were normal. A blood test confirmed he was positive for ATOP (something like that). This is very rare but similar to PANDAS.

Original poster
Shortysoso · 02/02/2021 16:28

That sounds very stressful Rupertpenrysmistress and I'm sorry to hear it. How is he now? Have you found an effective treatment? How old is he? Sorry don't mean to interrogate you!

We've noticed DDs tics get worse if she films them and watches them back. Not sure what that suggests (if anything).

OP posts:
Rupertpenrysmistress · 02/02/2021 16:48

My son remains similar to his initial diagnosis 5 weeks ago. His arm seems to have no control or co ordination to it, his walking can be affected depending how tired he is. No real treatment as it is self limiting time frame for recovery is weeks to 2 years. My son is on penicillin until he is 18 due to the risk of heart valve damage. He is 11 and has become incredibly attached to me and seems to act younger than his years. It is tough but it was good to get a diagnosis. My son's symptoms were more extreme than your dd though, poor speech and mobility because SC is a neuro/immune condition. I would speak to your GP. It may be that she had covid although negative but, if she had strep a like my son it might be SC or PANDAS.

PheasantPlucker1 · 02/02/2021 17:03

How much would a "full dose" of ibprofen be?

Friends DS age 11 has had very similar symptoms, nothing has been suggested other than tourettes and a wait and see approach.

HumphreyCobblers · 02/02/2021 17:28

Yes no one HCP mentioned it it to us either.

Full dose on the packet for their age

Original poster
Shortysoso · 02/02/2021 17:38

I can't imagine DD is the only teenager or child to develop tics during this lockdown, or previous ones. It's a rotten, stressful time for everyone. Online learning is all the pressure of the work with none of the release and pleasure of friendships. Kids are isolated and it's cold, dark and wet outside.

BUT the days are getting longer, the spring will come, the schools will reopen - and in the meanwhile we'll deal with this shit, that's what I'm telling myself and the children anyway.

OP posts:
Original poster
Shortysoso · 02/02/2021 18:06

Thank you Rupertpenrysmistress. I am sorry to hear your son is so badly impacted. Dealing with serious health issues is by far the hardest, most exhausting, more demoralising bit of parenting (the tic is the latest issue and by no means the most serious) for me. I hope things improve for you.
And yes, I think I will make a GP appointment, see where that leads although reading past threads it seems decent advice is thin on the ground for tics, never mind treatment.

OP posts:
Rupertpenrysmistress · 02/02/2021 21:00

Let us knoe how you get on. I have to say I took my DS to A&E in the end due to his speech and they were amazing. He had 2 scans and a diagnosis in about 36 hours. I hope you get some answers soon.

Original poster
Shortysoso · 02/02/2021 21:11

Will do. Good to know you had a positive experience and got a diagnosis.

OP posts:
Brenna24 · 03/02/2021 21:14

Has the ibuprofen helped?

littlestpogo · 03/02/2021 21:24

Hi OP

My DS is much younger than your DD (9 now ). Last lockdown he did develop tics - he had various ones and seemed to ‘cycle’ through them - so they’d last for a few weeks and then a new fix would appear and take over the last one. He does suffer from anxiety though and on the pathway to diagnosis for ADHD. His were worse on zoom as well ( and he also refused to engage with to his Ed psych on zoom). His Ed psych pushed for him to go into keyworker school and they resolved themselves.

Sorry that probably isn’t any help at all as he is younger than your DD. I did contact the GP as was concerned it was something else but the way it resolved itself indicates with him at least it was triggered by anxiety ( not in any way taking away from the suggestions of PANDAS).

DifficultPifcultLemonDifficult · 03/02/2021 21:32

My dd developed tics, I tried lots of things and they were getting worse and worse and worse.

4 weeks ago I tried hemp oil capsules, she hasn't had a single tic since.

Hers were vocal, blinking, neck movements, shoulder movements and hitting herself.

these are the ones I got her.

I didn't expect them to work, certainly not as effectively and quickly as they have but I 100% recommend them, or you can get drops if your dc can't take capsules.

Original poster
Shortysoso · 03/02/2021 21:32

Thanks littlestpogo, I am glad your son improved. There is hope!

Definitely no improvement yet but it’s only been just over 24 hours, although I’m leaning more towards stress than infection I think.

OP posts:
Solfege · 14/04/2021 18:26

@DifficultPifcultLemonDifficult
I realise this is an old thread, but have your DD's tics stayed in abeyance since you started giving her hemp oil?

grumpyhetty · 14/04/2021 18:33

There had been an explosion of tics in lockdown, especially among teenage girls

adc.bmj.com/content/early/2021/03/06/archdischild-2021-321748

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