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

Having a diagnosis is a gateway to getting all sorts of help.

More to the point knowing what it is can have a huge psychological benefit in as much as she knows what it is and what there is available in terms of managing strategies.

Sorry haven't RTFT. Even if it's true that the absences are due to anxiety, surely it is worth knowing that so she can get help for the anxiety and appropriate strategies can be put in place?

My teen had a slightly different condition: she has longstanding, well-controlled epilepsy with an identified physical basis. She had begun to get a variety of odd new seizures with increasing frequency. She went into hospital for EEG and video monitoring to capture what was happening during these seizures. This established that they were non-epileptic seizures probably due to anxiety.

In her case, it was anxiety about her health which was creating a vicious circle: the more she worried about the new seizures, the more often she had them, which in turn made her more anxious. Reassuring her about it cured the problem almost completely overnight.

I don't suggest that it will be so simple for your daughter, but this illustrates the importance of seeking a diagnosis rather than dismissing problems, whether or not they are caused/exacerbated by anxiety. Like physical problems, anxiety is often treatable and requires diagnosis.

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.

Just to add to the above post, she already had the complex tics when she started following them - she went looking for more information and that’s when she found them. Followed them for a while as she found it helpful and reassuring to see others, her age, going through the same thing.

She found herself mirroring their tics (the collapsing knee tic, I think, she saw with one of the people she followed), so she unfollowed them all.

Although, anything repetitive she’ll pick up, doesn’t have to be ticks. We had “Karen, there’s a cat with no pulse” for a while after the ad had been on the TV quite a bit. My DH was shouting down the stairs to me over the weekend, I was out in the garden so didn’t hear him. She’s now got a tic which is basically just shouting my name - fun times

In her case, it was anxiety about her health which was creating a vicious circle: the more she worried about the new seizures, the more often she had them, which in turn made her more anxious. Reassuring her about it cured the problem almost completely overnight

Definitely. Even if it is anxiety causing them, she wants to know. We won’t find out, if we don’t investigate.

She’s always said, having the Tourette’s diagnosis helped massively. She used to say she had complex tics, which was often met with blank stares, but she found everyone knew what Tourette’s was, however, she didn’t feel comfortable saying she had Tourette’s when she hadn’t been diagnosed. Once she had that diagnosis it gave her a lot more confidence, which in turn has helped her anxiety and mental health.

It’s all a bit of a viscous circle - and she gets massively pissed off as she feels she isn’t being listened to.

Omg I'd have gotten up and left if I had anyone say that to me,OP! I've got a SN adult son with CP,Mood disorder and lots of other labels-no normal parent goes around collecting labels like a stamp collection.

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.

I do kind of want to give her the benefit of the doubt, and tbh, CAMHS made me feel like a neurotic parent too.

All they wanted to do was explore was my anxiety - but I don’t feel like I struggle with anxiety. Stuff makes me nervous and worried, of course it does, but I don’t feel that it controls me or I need help with it or that there’s anything particularly out of the ordinary in being worried about something.

Lots of other friends comment how calm DH and I are with it.

Yes, I’m worried about her, but at the end of the days, she has Tourette’s and she is having these episodes, whatever they may be

Tell your friend firmly " You are not a doctor and have no qualifications in the field. Your comments are ill-judged and unhelpful , so I'm not going to discuss DD with you again. "