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

OP please ignore your ‘friend’.

I once spoke to a Ed psychologist who told me that ASD was a ‘label’ that she wouldn’t want her daughter to have. This was after I told her my daughter is autistic. I smiled while thinking ‘you ignorant judgmental cow’.

My DD has anxiety and it can be overwhelming for her but she also has autistic traits - obsessive behaviours and routines. Anyone who judges her or us on how she/we manage them can go jump.

@SisterMonicaJoansHabit - absolutely

When my DD was told she was autistic she was visibly relieved, she then understood why her brain was different. She didn’t need the ‘label’ to know she was different she had worked it out by herself and was deeply ashamed until she was helped to understand that brains are different and this is to be celebrated!

Your friend is ignorant. A lot of people with no real experience of children with SEN like to spout a load of crap. CAHMs just want to get rid of you because it's cheaper and they are seriously under staffed/under funded and really not fit for purpose.
You are doing absolutely the right thing.

Your 'friend' is ignorant. It's so important to get to the bottom of neurological issues. You're your daughter's advocate here - sticking your head in the sand wouldn't do her any favours.

I would put the friend in her place.

Your friends (the one your OP was about and the one who was shocked at you & DD laughing at a tic) are being knobs. Ignorance (through not having experienced a situation themselves) is forgivable, but foisting their ill-conceived opinions on you is not.

Don’t doubt yourself; it sounds like you’re doing a great job of supporting and advocating for your DD.

Many people are too lazy to engage with other people's distress, so minimise it instead so they don't have to bother.

I agree with @BlackSwan… You KNOW your daughter. You are her advocate.

For what it’s worth my DD had what we thought were tics and were dismissed as so by her Dr over the years. During lockdown they got worse and following eeg it was discovered she does have absence seizures. She’s now medicated and the tics and seizures have stopped. Looking back, she’s had them for a long while and now things make sense- her anxiety etc. She’s completely unaware of her seizures but then can’t understand why she’s missing bits in class, or why she’s suddenly fallen over. Now the pieces of the puzzle fit together and we can help her get through it. It’s not about the label, it’s about doing what’s right for your child.

Yanbu, you are a great parent

Your friend is talking rubbish! I had undiagnosed epilepsy for 12 years and it was horrendous, finally got diagnosed and started receiving treatment last year and my whole life has turned around. It’s not just about getting medication, it’s massively comforting just knowing what’s going on! Sounds like you’re doing the best thing for your daughter and I hope her neurology appointment goes well.

Your friend sounds like she has very strong opinions on something that she knows nothing about.

Suzpected epilepsy needs to be investigated and treatment started.

This is not a "pull yourself together we never had this in my day" situation. It can be fatal

That DD has probably got used to living with anxiety so doesn’t notice it anymore

Your friend is a fool. This sentence alone proves it.

& very well done to DD btw - learning to manage anxiety is hard, even for adults, & the fact that a teenager has lifted so much of the oppressive 'fog' as you describe it is a major achievement to be celebrated

Thank you!

What really clicked for her was understanding what anxiety is, why she feels that way, and recognising those feelings, before they take a hold. She can then use her CBT techniques to keep a lid on it. She’s worked really hard, and done so well. Back in the first lockdown she couldn’t leave her room without having a panic attack, and she’s now out with her friends, looking for a job, hopping on the bus, etc. She’s absolutely amazing!

But getting a diagnosis for her is not a bad thing. It isn't the end of the journey but it can be a battle and without a diagnosis then help is harder to access.

DD already has a diagnosis of Tourette’s. She had tics as you describe for most of her life. A couple of years ago them became complex physical and verbal tics, so shouting out random stuff, swearing (unfortunately), the movements are more complex now, plus they can be self injurious. She was diagnosed with Tourette’s about a year after they changed.

What were looking at now is the “odd episodes” and whether they are indeed, absence seizures or a tic.

YANBU. Your friend sounds insensitive and ignorant.

A diagnosis is not a label. It's a medical diagnosis that will hopefully allow your DD to obtain appropriate support and reasonable adjustments.

I hate the word 'label' when used in the medical context. A diagnosis (of anything) isn't a bloody badge.

You sound like a great parent OP.

Thanks all,

Sorry, suddenly got mega busy at work and crossed loss of posts

I’m glad (but also not glad) that other have felt the same way about CAMHS wanting to push it all onto the parent. They really did make me doubt myself.

I can see both sides, and if you are hearing similar ideas from more than one source it's worth fully reflecting on what you are hearing and weighing it up, even if you end up discounting it after this process.

I work with a lot of young people in a mental health/disabilities context within education. We do occasionally get situations where parental concern is almost like another layer of stress for the young person, it's another burden and weight of expectation for them to contend with and they benefit from some space to try to find their own way. There have been a couple of times in the past where we have felt a student has been unnecessarily pathologized by parents and that has been harmful for them. Of course we often see the opposite, where there are clearly major difficulties but a lack of acknowledgement of this and support from family.

Obviously I don't know the ins and outs of your DD's experience. Seizures happen in many forms and absence seizures can be very different from what people usually expect of eg. epilepsy, but of course concerning symptoms need proper investigation by relevant professionals.

She has magical medical powers to know it won't need diagnosis and treating. I'm surprised she's got the time to meet as she'll be busy with the 5m waiting list in England.

It''s perhaps indicative of the level of her thinking that she's extrapolating from her experience of anxiety.

Some symptoms need investigating, diagnosis where possible and treatment where the benefits outweigh the risks. You're not anxious OP just a responsible parent. Let the neurologist's work take it's course and evaluate what they diagnose.

If you get any more criticism, ask this person or CAMHS what the adverse outcomes of untreated absence seizures can be and of what conditions they can be a symptom? See how confident they are in their answers. I don't want to worry but these can be serious but hopefully not.

Good luck.

My DS is diagnosed with severe ADHD and GAD, along with other learning issues. He's currently being reviewed to see whether we add a Tourettes diagnosis to the list - there's uncertainty because it could be the other elements that drive the Tics.

In my view, my child has an extra cross to bear due to the differences he has. That 'cross' is slightly easier to carry if he knows what it is, and can get help with it. If you can define something and understand it, then you are more likely to be able to deal with it.

People say really thoughtless things about kids with mental health differences. Unless your friend is a doctor in the relevant field then she needs to butt out.

My daughter has just started having absence seizures. They can be cause by epilepsy or as a reaction to stress/anxiety/trauma.no matter the cause, the seizures themselves are the same. Ignore your friend, you are doing the best for your child.

What an unhelpful friend she is, DD and many of her friends have diagnoses across the spectrum, her best friend has ticks like your DD. Both have felt much happier understanding their conditions and it’s helpful with their anxiety too

Just one thing stood out to me, DD also has short absences but hers are part of her inattentive ADD and it’s not uncommon in spectrum conditions and doesn’t always indicate epilepsy

Try to give yourself space from this friend. Quite by accident (self preservation perhaps) my closest friend has a child with additional needs too. I found that whilst I can just about tolerate the unintentional ignorance in small bursts, I need good friends to really understand what being a parent pressing for basic medical for your child is like. It’s exhausting. and services are so over stretched their first response is often ‘are you sure it’s that bad?’. I really can do without friends who parrot similar things, as I’m sure you can too. I don’t get angry anymore, I just keep friends like that in the ‘see without the kids and keep SEN discussions off the table’ category. I’d suggest you keep away and when you see her again make it clear you don’t want to discuss your DD.

@PuffinDodger

I think that because camhs are underfunded and can't manage the huge workload they just try and sign people off any way they can so they don't have to treat them and making out it's a parent problem is a way of doing that

Yep, certainly true. Things have to be quite extreme in order to warrant CAMHS' attention. It's not their fault, but it is infuriating.

she doesn’t need a diagnosis as it’s not like she’ll be medicated

@alloalloallo She could have meds for her tourettes, and anything nerological if anything shows up on tests too.

Is she not on medication for her tourette's and is your friend aware of that and thinks it's the wrong decision to make?

I.e 'you're not going to have her take medication doctors suggest/she's not going to take what they suggest if she has another neurological condition so what's the point in a diagnosis?'

This is the only circumstance where what your friend says would make sense.

Otherwise, they're just mouthing off and annoying.

I've had something similar happen to me, everyone said DD was naughty and attention seeking.
Managed to get her into a specialist school. Turns out it looks like she has anxiety which has been caused by underlying ADD or Autism. we are waiting on a diagnosis. DD is like a different child since moving to the specialist provision. She no longer labels herself as naughty and is getting an education. This is what we have been fighting for for years. Yes we are essentially waiting for someone to label her but in this world you don't get any help unless you have a label! People need to butt out, unless they have lived in the situation its all very well giving their 2 pence worth but equally is their opinion not medical fact.

Keep fighting for your daughter, you sound like a great mum. The most important thing we did for our DD was to believe her and have her back.