Tics worsening

[JenRL]

Please can anyone help. My 8 year old daughter started ticcing about 6 weeks ago and they are getting worse. They are so prolonged they actually look like she is fitting. Her neck jerks back uncontrollably for about 30 seconds to a minute. She looks terrified and is in constant pain as a result.

What can I do?

I am about to start therapy for her but what physical damage is she doing to herself? What tests should I be asking for?

Anyone with any experience or suggestions please help.

Hi my 8 year old son has tics too, he squint’s his eyes, twists his mouth, rolls eyes pretty much into eyelids, flicks hands and arms, makes noises when swallowing etc. He doesn’t do all of them but one will fade away and a new one will develop etc. I try to ignore them as much as possible as I found if I said something it would make him do it even more x

I have a few friends whose children have tics, they've all had success at eliminating or reducing them with liquid magnesium.

Thanks so much for replying. I have a consultant psychiatrist appointment tomorrow so hopefully some clarity. So heartbreaking to see 😭

They may offer medication if causing physical pain/distress. Is it anxiety triggering them? Xx

Would you come back and let us know how you got on please? I have a daughter in a similar situation albeit not violent tics but I do worry

Yes I agree that a good magnesium supplement may help with this.

More Magnesium in diet. Epsom salt baths.

She has been on liquid magnesium for about 3 weeks but not seen an improvement. I bought Floradix is there something better??
Epsom salts is this for relaxation purposes or does it have other properties?
Something I am about to try is a weighted blanket, Tourettes action helpline said this has a calming effect on the central nervous system - in case others are reading this in the same situation.

Yes this is anxiety induced as about 4 weeks preceding the tics she started following me, wouldn't be upstairs if I was downstairs etc though happy to go to school/clubs/Brownies.

I think I know where it stems from but when I ask her what is worrying her she says she is scared someone is going to take her away from me. I have no idea where that feeling comes from.

My DC went through a few tics at that age. I was really worried, as they looked scary and painful, but we decided not to make a big deal of it and he did completely grow out of it after no more than 6 months or so.

I do remember Year 4 being a significant year in terms of his behaviour and thinking, going from 'little kid' mode to wrapping his head round the adult world. Good luck to you daughter in navigating this too x

Have a look at PANS or PANDAS. Could be a reaction to a recent illness - has she has strep or another virus recently?

We had this with DD around a similar age, it definitely seems to be linked to stress/anxiety. Hers does come and go and she will have long spells without it, sometimes it changes to a different movement or sound. Great that you have an appointment, hope they can help her and reassure you.

Thank you so much for your replies. I genuinely can't tell you how much that helps. Yes she has a blood test which showed a slight infection and took antibiotics as a precaution but PANS/PANDAS was ruled out.

It is the pain she is in that worries me and the new seizure style tic.
Hopefully will pass.
Appointment today at 2 so hope this helps us get the help she needs xx

Well the clinical indication for PANS/PANDAS was present, who ruled it out? Lots of doctors don't believe in it.

I would trial full dose ibruprofen for three days and see if any improvement. Won't hurt and might help. My sons tics stopped in thirty minutes after first dose after onset.

My son had tic syndrome- not as alarming physical ones as your daughter though. Paediatric neurologist was broadly useless - just suggested strong medication (haloperidol) but did grudgingly give us a referral to a child psychologist who was really helpful. He did grow out of them which is very common. His were more pronounced (we didn’t use judgment words like better or worse) when he was tired or over excited and disappeared when he was in flow.

I hope you get the help and support you need

Hi, I just wanted to let you know you’re not alone. my kid is 7, and has also had tics for the past 9 months. Initially it started with widening of the jaw, we’ve also had hand curling, arms rising upwards from elbow, a neck jerk which was awful, nose scrunching. Often we go months with few or hardly noticeable tics then they come on stronger. We’ve had a good 2 months apart from a little nose scrunching but in the past few days there’s been an element of all of them - but especially the mouth widening and a surprised look on their face. We try to ignore thought I’m sure the worry shows on my face. You start to question every movement and sound! I feel really lost and struggle to sleep because of the anxiety around it; endlessly Googling and catastrophising about the future. We do magnesium baths and I was for some times giving a magnesium liquid but they weren’t popular and I didn’t notice much difference; just felt like at least I was trying. Did go to the dr initially who seemed a bit confused and then our referral to the local camhs team got rejected. We’ve since taken the wait and watch approach as, to be honest, because we don’t know who to turn to, and I don’t think there’s much they can do and I worry that highlighting it will only make it worse. I’ve not spoken to the school and nor have they mentioned anything but I dread any kind of sport day, assembly or performance because I’m worried they’ll flare up. Anyway, I didn’t want to just read and run, just wanted to let you know you’re not alone.

Thanks so much for replying. I can hear in your post how scary it feels and that's exactly my feeling.
Since going back to school it has been better.
With regards CAMHS, we were lucky that the Consultant Psychiatrist overheard my pleas to the admin person and saw my daughter within a week. Diagnosed with transient tic disorder but after a year Tourettes Syndrome and we don't need to seek another diagnosis. Also diagnosed her with high anxiety and hyperactivity.
So my message is keep on with the CAMHS and don't let them reject you. I don't know how feasible that is.
If it is within your means see if you can get a private consultant paediatric psychiatrist appointment. The Tourettes action helpline can help you with a list of consultants.
The diagnosis might not be the be all and end all. What it did for us is get her on the waiting list for habit reversal therapy (HRT) and we are paying for private therapy (play therapy) but lucky enough to have a student practice so half the price as couldn't afford it.
Again, I found the Tourettes action helpline really helpful so try them. I hope this helps. It is such a scary time.
By the way, the ignoring wait and watch approach has definitely helped. Xx

Thanks you for replying. I will contact Camhs again today and will try the Tourette’s helpline. How did you approach speaking to your child about the tics? Everywhere you look you read you shouldn’t say anything or bring awareness to them. But at the same time I don’t want her to feel alone. how did you approach the school too?

At first we did talk about it, I got her a neck pillow, ice packs and ibuprofen for pain.
Then I tried to ignore it but over half term it got so bad she looked like she was fitting (she wasn't) so we talked about it.
We had a consultant psychiatrist appointment at CAMHS and in front of my daughter she told us all to ignore it completely 100% no ifs and buts. My daughter piped up and expressed relief at us ignoring it so we have done that.
If she mentions it I don't dismiss it but I keep the conversation brief.
With school, I talked to the teacher told him what was happening and asked him to ignore it.
Apparently in school it is much less.
Since her appointment the tics have reduced.
We are going to start play therapy in 2 weeks to address the anxiety.

Hi JenRL and 001Z, my daughter is in a similar situation where lots of tics have just suddenly appear and they seem to be constant. I’m in a terrified mode and don’t know what to do. How are your little ones now and did you find anything that helped? Thanks!

It is so frightening isn't it?
After I last posted, we kept up with the liquid magnesium, gave her multi vitamins (though I think she eats well anyway) and started playing therapy.
We tread a fine line between being "normal" but avoiding things that might tire/stress her without telling her.
We ignored the tics completely.
We bought melatonin 1mg gummies to help her sleep. We gave them to her for a week and continue to do this every now and again (maybe once a week).
She attended play therapy from May to September.
By about June the tics had stopped.
My daughter's tics were definitely trauma induced, brought on by high stress levels.

On Wednesday, almost a year to the day where the tics were so bad I thought she would never hold down a job, my wonderful resilient 9 year old daughter stood on stage at Wembley Arena and sang a solo (two lines) in front of 12,000 people. She was on stage (having auditioned in May 2024 when she was still ticcing) for the entire concert as part of the stage choir for Voice in a Million.

There is hope xx

It is so frightening, and all I did the other night was catastrophise about her future, not having a job or marrying, I guess we fear the worst straight away. I also ended up watching the worst situations of what Tourettes could look like. I’m so glad yours is a happy story and your little girl managed to overcome! Well done on her for being so brave and signing in front of so many, you must have been so proud and relieved!
I am speaking to the GP today and I’m hoping they will test for Pandas as she had a big fever back at the end of Jan. I just worry as I know what sometimes doctors can be like and prefer the wait and see method.
thanks for the tips, I’m going to look into play therapy and I had also read about suplements. I started her on multi vitamins (although same she eats well) and have soaked her on epsom salts 3 times, but was looking at the liquid magnesium.
Do you mind me asking what brand/ where you got the liquid magnesium yet? I’m struggling to find where to get it.
thank you so much for your response!!

Hiya,

https://www.medino.com/product/floradix-magnesium-liquid-mineral-formula-250ml

This is what I use, Floradix Liquid magnesium.
Boots/Amazon etc are quite expensive I find medino better.

I really hope this passes soon for you and your daughter xx