How to explain neurology appnt to DS

[DearMartha]

My 6 year old has quite severe tics with no other presenting symptoms. He has become self conscious of them and has started to worry about them being seen by his teacher & peers at school.

We’ve got a referral to neurology to investigate further but I’m worried telling him about the appointment and taking him might compound his feeling that he has a problem and there is something ‘wrong’ with him.

Any tips on how I can position the appointment so it doesn’t make him worry or feel ‘embarrassed’ (his word about how being observed doing it makes him feel)? Thanks

What conversations have you had about the tics so far?

It’s happened for years and daily and we’ve never mentioned it or passed judgement. Then about a month ago he came to us to say he felt weird in his body and demonstrated the tic behaviour to explain why. He said he didn’t want to do it anymore but he can’t help it and what if people look at him at school. He said there’s girls who has asked him three times why he does it and when I asked what he said he said he’s embarrassed and walks away. We’ve said there’s nothing wrong with it, there’s nothing to be embarrassed about and perhaps it’s his way of processing excitement, which he says it is.

We’ve said he can talk to us any time about it but he has no need to be embarrassed. We continue to ignore it but give him space to do it and have named it his ‘dreamies’ as he says it feels like a day dream. He’s asked us not to talk to his teacher as he’d be embarrassed but we have without him knowing at Gp recommendation.

I’d say that he has asked questions so you have booked him for a check up to see whether they can help him with his tics, as he’s been struggling a bit.
Use the language you already use,

Add a bit more to say the doctor can check everything is working properly.

I'd say we have an appointment to go get his head checked by a doctor

Don't complicate things

thank you! I think if I was told I was going to the doctor to get my head checked I’d be v worried! 😆 I think DS’s response might reasonable be, ‘why, what’s wrong with my head?!’
I take your point about not over complicating it though.

I would be honest and say because he has told you he doesn’t like the tics you are going to see a doctor to find about more about them.

Goodness, don’t say that to him!

I would tell him a little bit beforehand (maybe a day or two?) and position it as something like: most people don't have these, You do and the doctors need your help understanding what it's like.

Basically - help him feel like a hero.

Oh this is great- thank you!! He’ll love this, I think.

This!

The thing is, other people are reacting to it so unfortunately, you telling him it’s fine isn’t going to be enough in the long run. He might even feel that he can’t talk to you about it because you don’t accept that it’s a problem. As a kid I had some things that provoked a similar reaction as what your son is getting and my parents’ line was that the other kids were silly to ask, so I started to feel ashamed to tell my parents about the kids. But what I needed was firstly to understand what was causing it and ideally stop it, and secondly some prepared lines for when people said “why are you…”

It will probably be helpful if he has a prepared answer for people who ask him what’s happening that he has XYZ condition.

Look up the website for Tourette’s action who will have explanations for kids and videos. You may not want to show it to your ds before the appointment but it could be useful for you and to show him after.

My DD’s epilepsy started around the same age, we explained that your brain is like a computer. The doctor was going to see why hers sometimes “glitched” or “buffered” like when the tv stops and you have to restart the programme. We told her the doctor was a supercomputer specialist.

paediatric Neurologist will be talking to children every day - our was amazing with our daughter.

It's hard when other children start asking about tics.

My DD has Tourettes. She had physical and small vocal tics since she was about four which we always pretty much ignored as lots of children have tics. Around age eight, other children started commenting on them at school and asking her to stop doing it...which she couldn't. That was really hard to hear as a parent, that DD was embarrassed by not being able to stop. The tics can also sometimes be painful or make DD drop something so they did need to be discussed with a paediatrician.

I'd personally say that you're going for a chat with the doctor so they can understand how your DS is feeling. DD already had numerous medical appointments for other health conditions which made the appointment more normal. A hot chocolate in the cafe also helped!

At 6 children do understand a lot more than a lot of people realise.
He has came to you as he notices that he is having tics and people are noticing. He will also notice that other children aren’t having them also.
Approaching it as though ‘it’s fine’ and ‘there’s nothing wrong’ may feel to him
as he isn’t listened to.
I would explain about the conversation he had with you and that you have listened and you are going to see the doctors to see about the tics to learn more about them.
If he has a diagnosis it may be better for him
to understand to say to people…it’s because of Tourette’s (for example).

My daughter is nearly 6, when she was 3 my husband developed epilepsy and unfortunately she has been alone with him as he had 2 seizures.
She calls them a ‘wobbly dance’ so having to explain that to her in simple terms was difficult however she is aware he has a doctor and a nurse for the ‘wobbly dances’ and he takes medication as she says to him ‘it’s very important’. She knows he has something called epilepsy and that’s what makes the ‘wobbly dance’.

You are all brilliant. Loads of great ideas here- thank you!

If your child is a worrier, don’t say anything in advance, usually with my two I would tell them on the day, by the way we are going to see someone later, it’s nothing to worry about, I will be there with you etc. I hope the appointment goes well OP.

I wish you luck in your appointment. It will be very interesting to hear what they say.

Both my DH and DS have tics (vocal but mainly physical)- both starting at around the age of 6. DH was taken to the docs as a child as was DS. In both cases it was said there is nothing much they can do and it's best to learn to live with it.
Maybe things have moved on a bit by now (DS is 30! Where did that go?!).

Continue this conversation.

Sweetheart it's likely nothing but to make sure mam and dad will take you to see a Dr who will look into your tics and see if you need any medicine to help. We just want to make sure you're OK and the Dr can answer any of your questions

He’s mentioned then to you so you are going to see a doctor so you can all understand them better. No blame, nothing wrong, just about understanding.

He is a very important little boy. So important a Dr has heard about him and wants to meet him ( to see his tic - obviously up to you if you tell him that part).

He might get to use some of the hospital's new equipment that investigate important little boys and girls.

Then after the Dr (or it might be a physiologist) has met him you are going to take him to get a small toy or a trip to the park or something else he likes.

I would imagine they will have a look in his eyes and ears, I would be tempted to get him his own examination torch - see below for a cheap one.

industracare.com/products/medisure-pen-shaped-examination-torch?variant=43805645471993&country=GB&currency=GBP&utm_medium=smart_campaign&utm_source=google&utm_content=sag_organic&utm_campaign=gs-2019-06-12&gad_source=4&gad_campaignid=17518201358&gbraid=0AAAAADJNVyR2oCKD_gMawVIRgySUpQnBr&gclid=Cj0KCQjwxo_CBhDbARIsADWpDH4ablwqryJGI0ongtE2BgzfnhWx5dtaPEKklPz8-6g4z40D2SZSHBIaAilzEALw_wcB

Tell him the truth! He's told you about his tics making him feel self conscious. You're taking him to a doctor who knows about tics and might be able to figure out how to help him. Knowing you're getting him some help might actually reduce his anxiety around the tics, which could in turn help reduce them.

By 'He' in my post I men the OP's little boy not the Dr.