To be really bloody offended by this?

[alloalloallo]

My 16 year old DD has Tourette’s

Recently she’s been having these odd episodes that the paediatrician thinks are absence seizures and referred us to a paediatric neurologist. We’ve been bounced between the neurologist and CAMHS for a few weeks and it’s been quite frustrating, but we’ve finally got an appointment for the paediatric neurologist.

A few days ago I met a friend for a drink.

We were chatting about general stuff and she asked me how DD was getting on. Friend has witnessed the episodes and knew we were having problems, I replied that DD was fine and we’d finally got an appointment sorted.

Friend then asked if I thought I was becoming “obsessed” “what good does all these labels do?” and “does it matter if she doesn’t get a diagnosis?”

I replied that yes, DD wants to know what is happening to her and why.

Also, her secondary school were great, put access arrangements and stuff like that in place before she had a formal diagnosis, however, she’s starting college in September and wants to know that they have all the formal information and can work out what she needs before she starts.

DD has always had tics, but they were always simple tics (blinking, sniffing, etc) and we were always told it was due to her anxiety. A couple of years ago she went on to develop quite severe complex verbal and physical tics - again it was felt it was due to her anxiety and we had to wait a year before they would begin further investigation.

DD has struggled with anxiety in the past. Back in the first lockdown, she couldn’t leave her room without having a panic attack. Over the last year or so she has had CBT with a brilliant therapist that she really clicked with and is feeling pretty good. She says she now understands anxiety, can recognise what she’s feeling, has been using the CBT techniques and feels like a fog has been lifted - she’s out and about with her friends, is looking for a summer job. She now sees her therapist once a month for a check-in chat and the therapist is really pleased with her progress. DD has occasional bad days with it, but the good vastly outweighs the bad and is thoroughly pissed off with everything, ever being blamed on anxiety.

Apparently friend is worried () that I’m making DD’s anxiety worse by pursuing this. That DD has probably got used to living with anxiety so doesn’t notice it anymore, that she doesn’t need a diagnosis as it won’t change anything, that labels will follow her around for the rest of her life, “she doesn’t need a diagnosis as it’s not like she’ll be medicated”.

I now feel like I’m some kind of over anxious mother, pushing my DD into labels and diagnoses she doesn’t need, making her anxious, and that we’re doing the wrong thing.

Tbh, CAMHS made me feel like that too

I have known people who have non-epileptic seizures, actual on the ground fitting etc, which are psychosomatic/behavioural. So it is a possibility.

But it still needs to be investigated and as you say will help with any adaptations/help she needs at college either way.

Thing is, I don’t feel like I am anxious or that I have issues with anxiety. It was frustrating being pinged between CAMHS and the neurologist, yes, and DD was pissed off with the whole “oh, it’s just your anxiety” thing she always gets

She has these episodes, there’s no getting away from it. We don’t know what’s causing them at the moment. It might be a tic, it might be absence seizures or it might be caused by anxiety. We don’t know at the moment.

DD is fed up with being told “oh, it’s just your anxiety” and she feels like people aren’t listening and she’s being fobbed off when she tells them what’s happening and that actually, she doesn’t feel anxious.

If it helps, I've struggled variously with aspects life since childhood. I've been diagnosed (mid 30s!) with inattentive adhd and autism (mild presentation) and everything suddenly makes sense! I'm now MUCH better able to manage many bits I struggle with, and don't feel like a freak or somehow wrong anymore. Labels for me have been a MASSIVE help!

*ADD

I think you have to do what you think is best. I would be angry at a friend who said what your friend said to the point I would not be sure if I could continue the friendship. I think she showed a totally lack of understanding for your journey. Your daughter has anxiety and its likely not knowing what these new ticks are is contributing to her anxiety and making them worse. If she has an expert tell her it might help her process things. Some people like labels as the find them helpful...some people do not. But its the individual person's right to decide if they like a label and not for others to judge.
I hope you sort your daughter's problem. She has done so well to get to where she is from where she came from.

Sorry but your friend is being a bit of thickwit and needs to mind her own ever so perfect undiagnosed life. What total ignorance from her.
Of course you have been right to pursue potential diagnosis. Ignore your "friend" and next time tell her she's uninformed and rude

ah I've just read the whole thread. You sound like a great mum and your daughter has done so so well x

No doubt that more conditions like Tourette’s are being diagnosed more often. There was an article in Vice showing stats on the rise of tics being diagnosed in young people relating it to the popularisation of such disorders. So your friend may have a point and hopefully wasn’t rude in the way she conveyed it. That doesn’t mean the diagnosis is not real and a seeking a diagnosis sounds very sensible. It’s okay to have different opinions with your friends. I’ve found that it’s difficult for friends to understand the impact of behavioural difficulties in children from afar.

@Justilou1

I suspect that your friend only asked how your DD was so that she could share her fucking stupid and dangerous opinion rather than coming from a place of genuine concern or with any educated insight whatsoever. That friend should be told to get back in her box. (I’m furious for you!)

Exactly what I thought.

Is your friend really dim?

'Cos she sounds really, really dim.

Of course a parent would want to advocate for their child and find out exactly what the issue was.

Information is power.

Have a bath the next time she suggests meeting up, more relaxing.

Good luck.
Your daughter is very lucky to have you.

Your friend is bonkers.
Of course YANBU.

YANBU because you are supporting your dd to understand what is happening to her. YAB very sensible to get a formal diagnosis now, before she changes to her new college. YA surely doing what any of us would do when there is something 'medical' happening (to us or our dc) in trying to get to the bottom of it so that it can either be fixed or managed (depending on the issue).

I repeat, your 'friend' has some very odd views.

DP never had any help or "label" for his anxiety in childhood and he was effectively housebound when I met him. In the 8 years we've been together he's never been to a shop for an example (he is improving but still). Your friend is a moron if she thinks that pursuing this won't help your dd. She obviously needs to know what is happening to her and why so she can get help and have real understand of her conditions thus deal with them in the right way.

A paediatrician is concerned enough to want her seen by a neurologist. Sorting out the distinction between seizures and non-seizures is really important as it will guide decisions about likely future risks, and when and what medication should be trialled for potential benefit.

A lot of neurology, both child and adult, still feels like descriptive labelling, as there is still a lot we don't understand about what actually causes things. That doesn't stop us being able to use those labels to identify if a condition is likely to get better or worse or stay stable over time, and if it is likely to respond to a particular treatment plan.

We've also had the label or not conundrum with ASD in our family. DS was seen and described as "autistic traits" age 10 ish, we were given the option of pursuing a formal diagnosis but it was clear that there wasn't a lot to gain for him at that point in time by doing so. As he got older he was lucky enough to be in an environment that nurtured his skills and gave him a peer group such that by 12/13 he really had no issues and our decision felt validated.

By contrast his older sister found reading around ASD conditions really helpful from the age of 11 or 12, and when age 13 we discussed exploring the diagnosis she expressed that she would find it helpful. With the "black and white" thinking common to "high functioning" ASD, acknowledging that she may experience things differently to other people can make a difference when things are difficult, and make it easier for her to withdraw or do whatever is necessary to cope. I think it also has helped her learn to express her stress cues more clearly to her father and I so that we don't push her in the wrong direction!

Generalised anxiety has been a feature for her too, come to think of it. Rarely impacting her seriously, thank goodness, but throughout her teens we've had interesting discussions as she became very aware of separating feelings of anxiety from her rational thoughts. Whatever, we must have done something right as she's just gone into quarantine prior to a gap year job and sounded to have managed her long-haul flight really well.

OP, well done to your daughter for learning how to manage her anxiety so well. It sounds like that is making it possible for all the underlying stuff to be sorted out. Good luck with the neurology appointment, hope it's not too many ages away, and that it is able to reassure you both, whatever is identified either way.

Nothing like helpful advice from someone who has no idea what they are talking about! I recently had advice from a friend with no children on how I could get my daughter to sleep in a cot.

Understanding what is going on with your body is surely highly important. If it needs medication or further intervention. She is also a 16 year old so she has some say in this, Im sure she wants to know what is going on.

Anyway your friend was being thoughtless and unhelpful, I wouldn't give her opinion another thought.

Thanks all

And to everyone else struggling

Just read back my op, and think I wasn’t very clear - it ended up being so long, I cut bits out and now it’s not clear.

Anyway, DD already has a diagnosis for Tourette’s

She has had simple tics for years (stuff like blinking, clicking her fingers, sniffing) but a couple of years ago they developed into more complex physical and verbal tics.

So stuff like, punching herself in the head, she can’t be trusted with eggs, she’ll stick her middle finger up, pinch you, we took our dog for a walk by a river and she tried to chuck herself in. She had a tic where her knees collapsed and she couldn’t walk for a couple of weeks. She says completely random phrases, swears, she’ll pick up a word or phrase and repeat it incessantly - drove me utterly bonkers with “Karen, it’s a cat with no pulse”, she makes the text received noise, she watched The Lion King and for about a month wiped all manner of stuff on her forehead going “Siiimmmmbbbaa”

Once she’d had these tics for about a year, she was investigated further and then received the Tourette’s diagnosis.

What we’re looking at now, is these “odd episodes” and whether they’re absence seizures, a form of tic, anxiety related, or whatever, we don’t know.

She has struggled with anxiety, but feels that everything gets dismissed as anxiety related and finds it incredibly frustrating

I am so so sorry OP but this made me actually laugh out loud

she watched The Lion King and for about a month wiped all manner of stuff on her forehead going “Siiimmmmbbbaa”

I had a very rare diagnosis when I was a young teenager. The told my mum she had munchausens by proxy!

They grovelled when they finally found out what it was. But like you. My mum advocated for me.

Tics and seizures go hand in hand sadly. Something to do with how our brains are wired.

Interestingly enough. Great or Monday street have seen a very sharp steep rise in the cases of Tourette’s due to TikTok people becoming big with Tourette’s. There’s a few stickers around about it. Just makes interesting reading.

Actually. Her and you aren’t on TikTok are you??

Sadly, your friend's attitude is all too common.

I do have some sympathy for her view that we might be exacerbating some issues in children's mental health (and for that matter, other adults too!). It's something I've wrestled with myself.

However, my daughter has severe anxiety attacks (and has had life threatening anorexia in the past). It's so difficult for others (including myself) to understand the way such a person's mind is working. It is so easy to lose patience, or be exasperated at someone's inability to go to the shops to buy new clothes (normally a great experience) because 'they just can't'. 10 minutes earlier they we so excited at the prospect, then all of a sudden 'they just can't'. There is no answer.

It's real. There MIGHT be illogical reasons for it. There MIGHT be social conditioning issues that are causing too many to have mental health issues, but it does NOT help to be dismissive of it.

Sometimes folks will say 'she's ok now though' - well, no, she isn't. She's just learned to manage a lot of things better, but they still don't see times she still struggles.

I don't think you will ever be able to explain to friends and family what it's like. I think you have to accept that they don't know enough and it's natural for them to trivialise it a little bit. It's annoying as hell, but until we all understand it better, we can't explain it well enough for folks to comprehend.

Part of the problem is that people still refer to conditions (such as Tourettes, ASD/ADHD etc) as labels and many people don't see them as being real disabilities.

15 years ago I was asked by an educational psychologist why I wanted a label for my son, I told her that I wanted a diagnosis for him and that a diagnosis was not a label, that if he had a diagnosis maybe, just maybe his classmate's parents would stop their disgusting labelling of a child with SEN, that the school would support my son and stop illegally excluding him, stop discriminating against him and stop treating him with contempt.

I also told her that you find labels on tins of beans, jars of jam, on storage boxes and drawers in the classroom, you put labels on your luggage when you go on holiday and you put labels on Christmas or birthday presents so that the recipient knows who it has come from. I asked her if she called asthma, epilepsy, astigmatism, Hypoplastic left heart syndrome etc a label or was it just neurological conditions.

If you and your child want to seek a diagnosis that will help her to access medical and educational support then it is not your friends place to try and dissuade you from doing so.

Good luck to your DD at college,

I think I want to defend the friend slightly.

She may simply be a total twat.

However, she knows you and has observed your behaviour around your daughter in ways none of us have. And children's behaviour and health are of course influenced by their parents, regardless of what the actual underlying conditions are. So I think we all need to self-reflect on how they are affecting their children - as I am sure you do. OP.

Again, she may be simply a twat. Or she may be a courageous friend trying to offer a perspective she thinks could help, after staying silent for many years, and at the possible cost to her relationship with you. Or could be a blend of both. If her position is simply that diagnoses are useless and the real issue doesn't exist then that's probably worthless. If on the other hand, she is seeing you do things in a way she feels is worsening things, and you generally think of her as a wise, perceptive person, then I would explore more with her what she feels she has observed that makes her feel that way.... then make up your own mind.

@DingDongDenny
There are different types of epilepsy and absence seizures would rarely be medicated. Not everyone who has epilepsy takes medication, some take daily meds, some only when a seizure is prolonged etc. Absence seizutes would be thought of as quite harmless in comparison

What? You can't just ignore possible seizures. Someone with Tourette's syndrome clearly has a neurological vulnerability. In my mind, that makes it MORE likely these are real seizures, not less so. Is there something different that you can be doing to manage her anxiety? Maybe. But ignoring medical conditions will not help.

Of course you need to know if it’s a tic or a seizure!

Your friend clearly doesn’t understand how difficult this all is, lucky her to be in a position of ignorance. Absolutely you and your daughter need to know what’s going on and why- things have to be ruled out, that’s not at all obsessive. Sometimes “a label” is very important.

@Nocutenamesleft

Actually. Her and you aren’t on TikTok are you??

I’m not on TikTok. DD used to follow a couple of people on there and Instagram with Tourette’s but found she was picking up their tics so stopped following them all about a year or so ago.