Tics/PANDAS?

[Donutsfirst]

Hoping someone wise can talk me down here.
DD7 has over the last month developed some tics- they vary from head tilting to shoulder shrugging to excessive blinking and the new one is clicking her fingers. I know tics are common in kids, and the advice seems to be to not draw attention to them and they should hopefully pass on their own, but I’m panicking about PANDAS. She had strep in April which was only diagnosed after 3 weeks of uncertainty as to what was wrong with her and she was treated with penicillin so I thought nothing more about it. However I’ve read about the link between strep + PANDAS and am now worrying it’s that.
I’m really keen not to take her to the gp as 1. She had repeated strep for 2 years resulting in a tonsillectomy last year, but multiple gp and hospital admissions have left her with a phobia of drs so unless she badly needs to see one I try and avoid it. 2. Everything I’ve read says that the worst thing you can do for tics is draw attention to them and by taking her to the gp she’ll panic and I worry she’ll then worry about the tics (which I don’t think she’s even aware of)
☹️

I'd ring and ask for a phone appointment with your GP some day she's not around so you can speak freely, and be very specific about your concerns and the reasoning behind them.

I was completely unaware of PANDAS until a colleague's son was diagnosed last year. They went to hell and back to get a diagnosis, so I do think you should pursue it - even if just to be told you're wrong because of X, Y or Z by someone with medical knowledge. The treatment kicked in quickly and he's a different little boy now, he's flying.

Hopefully it's nothing at all, PANDAS is rare and strep so common it probably is, but I'd want it confirmed given the tics personally. Maybe just my own bias because of my colleague.

Thanks for replying. That’s a good idea about a phone appointment. Do you mind me asking about your colleague’s son? Was it “just” tics or
were there other symptoms? I feel like I’m falling fast down a Google hole of fear ☹️

Afaik he had tics, lethargy and low mood but I could be wrong in that. He really is flying now though - very suddenly very sporty, they can hardly keep up with him.

The Google hole of fear is awful, most of us have been there. Google will tell you a broken nail is cancer if you look hard enough.

I'd just get her checked to rule it out as much as to rule it in iykwim.

Thank you so much (and totally agree about Google hole)

It's worth getting the tics on file as they have to be present for at least 12 months before being diagnosed with tourettes if it develops into that. It's also worth getting a blood test to check for nutrients deficiency.

DD developed motor tics suddenly at 13 they started infrequently and built up over a couple of months and then they disappeared as quickly as they had come after a rather long tic attack lasting 50 minutes they disappeared for months until we witnessed a traumatic RTC when they returned before (seemingly) disappearing it's been 10 months and no sign of them. We assume they were caused by stress and she's autistic so goes hadin hand with that for us.

My DC has PANS, you should definitely take your DD to your GP. As she’s had repeated strep then PANDAS could well be the cause of your daughter’s tics. Children’s with PANS/PANDAS also develop phobias so the medical phobia you mention could potentially be a symptom.

Have you noticed any other changes in your DD? How is she emotionally, academically, sleep wise?

The PANS/PANDAS UK website has a leaflet you can print out and take to your GP that explains the condition and treatment.

Thanks so much for replying. Do you mind me asking what other symptoms your child has other than tics? My daughter is generally quite anxious, requires repeated reassurance and never seems to go into a deep sleep, it’s always very light.

I have to say from my view working in nurserys and older the only children with tics are the ones who've been diagnosed with various things. I've never seen them in just normal active children

Thinking back to the first few months we saw a gradual change in personality after the infection that triggered PANS. She became very clingy, didn’t want to go to school, couldn’t sleep, started to develop lots of phobias, got really weird about food, stopped feeling hunger and thirst, her body temperature went haywire, plus she developed very subtle OCD symptoms.

The tics started much later for her during a flare but every case I’ve read about seems to present differently.

If I were you I'd adopt a watch and wait approach, unless you see any other symptoms which on their own would warrant a visit to the dr. My DS has tics which came on fairly suddenly, I'd say, around his 5th birthday. They have waxed and waned since and he still has them (he's now 9). I'd say it's definitely possible to have tics without any co-occurring conditions and without it being PANDAS.

@Donutsfirst - Do you mind me asking if you got any further with looking into PANDAS? I’ve fallen down a rabbit hole of googling tonight and came across your thread.
We have a 3 year old with sudden anxiety and OCD symptoms (collecting, unable to do certain activities due to x/y/z, repetitive counting) - We are currently awaiting a health visitor assessment as she felt it was maybe a behavioural issue and him trying to control us.
I don’t agree with her on that. His behaviours and compulsions are scaring him. I have been doing more research - and now came across PANDAS.

He had strep throat 5-6 weeks before the onset of these symptoms. He was unable to take the PenV antibiotics prescribed (instantly vomited at the taste) so after 24 hours of being unable to get a dose in I contacted the GP who prescribed a course of Amoxicillin. 4 days after finishing the course all the strep symptoms came back with a vengeance and it turned out he’d been prescribed half the length of dose he should have been so he was put on another course of antibiotics.

Am I going off my head here or could there be something in this?

Trust your gut, if you think it’s PANDAS then go with that. The way to tell if it’s PANDAS is if the OCD/anxiety respond to antibiotics. You need a course of antibiotics that will completely clear the strep. Shame about the Penicillin.

I would also add in ibuprofen as an anti inflammatory as PANDAS symptoms are caused by brain inflammation. Give the max dose for his age, keep going with it. Boots sell their own brand kids ibuprofen in large bottles.

What do his pupils look like? Are they dilated? It can be a giveaway sign. But doesn’t mean anything if they’re not.

I wouldn’t expect the health visitor to know anything about PANS/PANDAS, ask your GP for a referral to a paediatrician.

@TheGirlattheBack Thank you. I have appointments with both the GP and the HV at the start of the week so hopefully one of them at least gives it some thought. Or the GP is willing to try a course of antibiotics & ibuprofen to at least try and rule out PANDAS.

His pupils look normal. And respond normally to light.

I had absolutely no idea about PANDAS until I came across an article when researching ways to try and help with his sudden anxiety! But when reading about it I felt like someone was writing the article about my child! The only difference being that the children I’m reading about seem to have had recurrent bad strep infections - whereas mine only had it once (that we know of), although I know it can lie dormant etc

What a ridiculous and misinformed comment.
It is very common to have transient childhood tics even in children with no other conditions. As a primary school teacher, I saw many children with simple tics that didn’t lead on to anything else.

Yes, for some children tics are part of Tourette’s, Chronic Tic Disorder or PANDAS but that doesn’t mean the child isn’t ‘normal and active’ some of the most sporty kids I know have Tourette’s! Children with diagnosis are still normal children! I would suggest you get some training.

Terrible comment from someone who works with children!

I’ve come across many children with no other conditions than tics. I wouldn’t worry about it relating to anything else, you’ve enough to worry about!
In terms of PANDAS, follow your gut.

Thank you for calling this out. My son has a simple motor tic and we’ve been reassured it’s totally normal and will pass in time. He has no developmental challenges.

I linked to an info leaflet for GP’s earlier in the thread, take it with you to the appointments if you can.

I don’t know what your GP is like but from my experience some health professionals can be dismissive of Mums, be prepared to stand up for yourself and your child. Your health visitor’s comment about attention seeking is ridiculous, not sure you’ll get much further with them with an attitude like that.

There’s a Facebook group for PANS/PANDAS parents if you have any questions about healthcare in your area.

Let us know how you get on.

@TheGirlattheBack Thank you! It’s a phone appointment unfortunately but I have specifically picked a GP who i know is a big advocate of listening to parents (he’s a parent of young children himself) when they have concerns as they know the child best.

Our HV is honestly usually an absolute angel. Her comment was when I had contacted her regarding it being a potential behavioural change and was before I had ever even heard of PANDAS. Shes visiting us next week to do a development check just so it’s on record that everything else is “normal” developmentally so I will absolutely show all the information to her too.

Sounds good. Your GP won’t diagnose PANDAS, you’ll need to see a paediatrician for that. Getting the strep sorted with antibiotics and a referral will be a great start. Good luck.