Parent and carers of anxious teens(part 6)

[Stilllivinginazoo]

Another thread full!!
For anyone new,these threads started as my D's had crippling anxiety in year 8( and was later diagnosed ASD)now about to start 6th form in September we have been running this quite a while!
This is a safe space to discuss the overwhelm that can engulf us,seek advice and find friendship with others in a similar position.
Please note this is a non judgemental space and respect and care of each other is at the centre of what we are here for.
Whether you want to vent and run,or hang around a while,welcome!

Not sure what happened there..
125mg sertraline.did try 150 on g.p say softer camhs debacle to try tide her to adult services app but side effects hideously unmanageable for her- dropping sweat constantly,crippling gut pain (IBS/reflux was already a problem for that) etc.
She's had it before and it gave her depression she never had prior but camhs medic was adamant it's best shot with Prozac as the if this fails try that option..
Propranolol was great til it wasn't(started get blue fingernails and breathlessness)
Promethazine just makes her feel weird/heavy/walking through treacle but doesn't improve anxiety etc.
There must be a good combo out there for her,it's just finding it!(not help by acute awareness of her body/pain...

Today's been up and down.accompany me to shops(panicked)
Had nice bath,which was good
Lunch wasn't great,had huge wibble 3pm and snack is late (but in) after reflux kicked up and triggered another epic panic
DS had panic attack in car on way to school set off by an erratic fast heart beat and I was on phone talk him/him text reply for 20 minutes.
Lil zoo has come in complaining her tummy hurts(hates Thursdays) and hasn't poo in days(not drinking enough/eat regular) so it's been quite a trying day!

Hope everyone else has had a smoother Wednesday!!

Goodness zoo that does sound like a very trying Wednesday.
I hope tomorrow is better.
Setraline didn't work that great with my DD15 either, she also had side effects but not as bad as your DD. she's now on fluxeotine which is better but she's still struggling a bit. Getting correct medication is a minefield. She has a telephone medication review with CAMHS on Monday and I'm not sure if this is as good as it gets, she struggles to do more than an hour or two of activity / lessons a day or if a different dose/ med would improve things?
So sorry it's so very difficult for your DD it sounds like she needs a complete break from school but I know how difficult that is if she wants to sit her Alevels.
However she can do an access course later on if Alevels don't work.out so it wouldn't mean saying goodbye to her dream of uni. There comes a time when MH has to come first.

I took DD19 to GPs today re eating ( or lack of) she has a bmi of 16 but GP says she doesnt meet criteria for getting help.
Shes asked for blood tests and said make a follow up appointment with her in 3 weeks but receptionist said no forward booking appointments available so need to phone at 8am on the day you want an appointment but might not be able to get same GP ffs.

Zoo finding the right medication takes time, but there’s plenty of others to try. The right medication made all the difference for DS1, and we are still working on finding the right combination/dose to help with sleep. What is DD2 taking for her reflux? She could try something else for that too.

Runner have you read the new report about your LA? You can request the GP surgery make a reasonable adjustment for DD2 to see the same GP.

bounceDD takes lansaprazole and gaviscon advance
runnerI've pretty much given up on g.p appointments.smear tests due.ive had 3 reminders but can't get an app as by time I get thru none left.ive stop try get help palpitations /swollen painful joints and exhaustion.just suck it up and keep going my mantra now

Zoo there are other medications DD could try.

How is everyone?
We had a success yesterday as DD came to Xmas Market with us. Was busy but she coped really well. Had to find a quiet coffee shop at one point but she did brilliantly.
She has come a long way in a year. But I have to try and not to get too carried away as often one step forward one step back!
CAMHS have upped her medication so hopefully that will also help.
Hope everyone has had a good week

runner that's great news,well done DD!
I've spoken to PALS as we are now hanging in the wind waiting for support as was recommended by the lady from adult services I spoke to.
DS is struggling with negativity around school(I don't like the kids,they're loud/don't do the work etc) and having increasing amounts of panic .
Lil zoo hasn't been in school all week claiming tummyaches/not been loo but I suspect she has been as I have been giving flax in yogurt and lots pears,apples and higher fibre veggies

Zoo sorry to hear of recent struggles. DS2 can only manage 1 (2 at best) school day per week. It can be such a stressful place for our DC. I hope things improve with time.

Runner so wonderful about the Christmas Market! Hopefully this will give DD the confidence for more outings. As for weight issues, I went through similar at doctor’s with DS1. He didn’t seem to meet any disordered eating diagnoses (including ARFID). He is still underweight but has put on just over 10 lbs to make current bmi a little over 17. He racked up a fortune ordering Uber eats but it did the trick.

Still chaotic here. DS1 screaming for his own place and we are running out of options. Agreed to have me call his doctor and therapy referral. He’s so cruel when upset - anyone been there with me 🙁?

@vikingwoman sorry it's still chaotic and DS can be cruel towards you. Fingers crossed for therapy referral.
DC can be very self absorbed and unaware of the impact their behaviour has on you
This was definitely the case with my eldest DD when she was in grips in anorexia and to lesser extent youngest DD.
Today I left work, went to collect youngest DD from Tuition centre, I needed to pick up her prescription and wanted to do this before dropping her off at her SEN youth group she goes too as we drive past CAMHS office, but DD was having none of it -needed to get to youth group on time, which meant rather than her be 5 minutes late I had to drive twice around the ring road in rush hour which took an extra 40 mins instead of 5!
Sometimes I think I'm too accommodating!!
But on the plus side she is going to the Tuition centre one day a week and youth group both of which would have been pretty much impossible a year or so ago.

Zoo I hope you hear from PALS soon, how is school this week for them all?

Runner glad to hear of Christmas market, tuition centre and youth group success. I hope the medication increase helps. DD2, DS1 and DS3 react like your DD to the thought of being late. For them it triggers significant anxiety. I’m similar, although not to the extent it would prevent me from collecting the prescription first.

Zoo have you spoken to DS’s school? Have you thought about applying for an EHCNA for DD3?

Viking lovely to see you. Sorry things are still so difficult. Do you have anything like supported living arrangements where you are? 10lbs is a great amount to put on. DS1 and DS3 don’t meet the criteria for any specific eating disorder. They are diagnosed with EDNOS.

vikinglovely to hear from you.im sorry ds1 is having so many difficulties.like bounce said is there supported living that could be an option?
Sending big hugs and hope you are still digging little pockets of time for yourself to help you keep going when it's so tough.excellent weight gain for him though
runner lil zoo and dd2 wouldn't risk being late for anything,D's slightly less so(he would trust my judgement a bit more).

I'm looking for advise for dd2.
She is currently attending school on average one double lesson once it twice a week.she went one double Monday,tried 2double yesterday as was distressed by amount deadline she's about to miss for coursework etc and then came home exhausted and attempted to work a bit more.obe hour later can't grasp what's ment to be doing,within two hours literal hysterical tears and full meltdown.i held and tock her best part an hour before wash her face very cold water and set up a scented candle,calming Spotify music and a magic painting book to chill her down.
Pals got back to me yesterday,no way can push up queue.see crisis cafes(useless,needs meds change)and school can offer support.waot will be around 8more weeks.in 8weeks she will be flunking mocks...any ideas how to move it forwards?she has given her all to get to this point,strived do hard to repeat last year.currently flunking English lit Lang(d projected grade,was b) but has b for history and sociology...
Can anyone think if anything I can do to help her/school could offer so can plough on and make it to the end of the year.im desperate to see her finish year 13 and prove to herself she can do it or I fear she will fold in on herself and without any aspiration give up.

She sleeps literally on e to regulate do I cannot see a way forward as I'm so worn out☹️

Lil zoo hasn't been in again this week.sample came back normal.sxhool say if it's normal it's school refusal and needs to be there.shes becoming increasingly cuddly(unheard of) and wants evening walks just the two of us in the dark.she doesn't talk much,has constant music on headphones pretty much 24/7 when not at school but seems to like it so I drag myself out and do it night after night whatever the weather..
I haven't told school result yet as she's still saying tummy hurts etc.eating is sporadic,done days a good amount other missing a meal altogether.we missed camhs Monday as she said wasn't up to it.i spoke CBT practitioner and told him about everything as he's been engaged to help social anxiety.ge says will gently ask but as only met couple times doesn't want to break fragile trust.i know how he feels as our relationships super fragile as she shuts down on me if I push her to do things isn't within what she seems as ok(going school when in pains one of them).any suggestions there?school have said needs be do work,which I think she is - she holes up in bed mostly music on...suggestions here also welcome.
DS had a slightly better day yesterday claiming was "barely tolerable" .I intend have a chat by the end of the week with our student support link.i genuinely think it's all perception as his complaints about things seem reasonable behaviours/experiences to me(for example other kids coming into room where he's eat quietly with a staff member,staff ask he's ok others in.he says yes as assumes kids will be offend says no,then moans he won't eat cos they noisy and put off his food.ive explained Sen setting they won't be offended but he still won't speak up.complsins about noisy kids disrupting his learning in class too,and try get him to board with them/take sweets and snacks- which I point out is friendly behaviour!)
Sorry for the essay.im feeling very much like I'm drowning at the moment☹️

Oh zoo I'm not surprised you feel like you are drowning, you are amazing in everything you do for your DC.
I hope you are taking your own advice and carving out pockets of self care, you need to look after yourself.

I'm sorry I probably dont have any advice you haven't considered before ( or magic wand) just here to listen.

Its possible a new medication would help DD but this takes time to work and I know you are struggling to access services.
Can school offer any one to one support/ teaching for DD or even medical needs tuition?
To take off some pressure, can she not sit the mocks ?
It maybe that DD needs to accept that her health needs to come first, she has tried so bloomin hard and she's clearly very bright but she may need to step back.
How much of the curriculum has been covered?
Can she have some time off with absolutely no demands ? It's sounds like this is what is really needed but I know she's determined to sit exams. I totally get it, she deserves recognition for all her effort but it sounds like it's breaking her right now and you both may have to accept the timing is just not right and DD needs to concentrate on her health . This isnt a failure , she can do an access course later on if she wants to go to uni but it's just acknowledgement of where she is now.

I also wouldn't rush to tell school lilzoos result. They don't sound sympathic and even if pain is psychological it doesnt make it any less real. Hopefully CBT will help but it will take time as you say trust needs to be built .
Is she able to leave class ( no questions asked) to go to loo or a safe calm space if she's in pain or feeling overwhelmed.
Could CAMHS contact school and request reasonable adjustments?

I hope conversation with DSs school goes well, Clearly DS is hypersensitive but can they do anything to help? Quiet space, ear defenders etc. Can they give him anything to signal to staff he is distressed without him having to speak up to a teacher.

I hope your day is as calm as possible and you have a few minutes to look after you.

Zoo DD2 is now 18, she doesn’t need specialist services to change medication or alter the dose. The GP can do that, but as Runner said that isn’t going to be a quick fix. Does DD2 take anything to help with sleep?

Unfortunately as she is post 16 the LA are unlikely to provide medical needs tuition. They only have a duty to do this for CSA pupils. I think you should apply for an EHCNA now. Having an EHCP will remove the pressure to sit any or all of the A levels this year. I know DD2 wants to but realistically she is going to need the ongoing support an EHCP can bring. It would also enable DD2 to access therapies.

I would apply for an EHCNA for DD3 too. And also request medical needs tuition for her.

For DS, let school know DS is responding with what he thinks he should say. They will be aware some DC do this and should act on it.

Isn't it too late for dd2 to have an ehcp done?and what would happen if she were to get it?she's over a year in,will the work all be lost?as she's at 6th form in her original secondary surely she cannot repeat 13again?☹️

I'm very very doubtful school will think ehcp is appropriate for lil zoo as academically she's doing extremely well,producing a level grade work in year 10 history...

It isn’t too late for DD2. EHCPs can continue until 25 or 26 depending on circumstances. She could continue A level study (although depending on their registration maybe not a her current school, but then she isn’t attending full time anyway), switch to another course, do a supported internship/work experience/apprenticeship... whatever is suitable for her. Realistically if DD2 can’t attend school because of her anxiety and inability to self regulate she is going to struggle to work full time within a year. An EHCP will ensure DD2 continues to receive support, and it can provide access to therapies and PfA she isn’t currently receiving.

You can be academically able and still have an EHCP, they are about more than academic ability. DS1 and DS3 are both academically very able but still have EHCPs. DD3 clearly has unmet needs and isn’t attending school full time. She needs an EHCP to ensure she receives all the support she requires and has her needs met. The school don’t have to agree, you can apply yourself.

What's PfA?

Preparation for adulthood. PfA provision should be in DS’s EHCP too.

bounce thank goodness we have you - and your expert knowledge - to help navigate our kids’ needs!

zoo I’m sorry I can’t offer any suggestions. DD2 sounds so much like DS2 going through very similar. DS2 has his meltdowns at school however. I’ve reached my breaking point with his school and am keeping him home this week (I’ve taken a week off work). He can do most assignments online. Without getting into all the details, the school called police on Friday because DS2 was holding a sharp pencil in an attempt for staff to not approach him. We’ve been repeating the fact that he needs to be alone to de-escalate since the start of the school year. I even showed him how to walk home from school (25 minutes) so that he has some control and can leave if he needs to. It pains me so much to see him in such distress at this school that I’m allowing him an indefinite break. The school expected me to speak with police and my son when I arrived at the school. I saw DS outside and just said we were going home, with him hiding his tears on the subway.
The police arrived at my house and were understanding as usual.
I then wrote a stern email to the principal requesting specific changes before he returns.
Thanks for letting me vent! I just wish I could offer sound advice. But I truly do understand 🌸

@vikingwoman Thats sounds really tough but, for what its worth, I think you handled it so well. A break sounds like a good idea and I hope principle responds positively to your email requesting adjustments.
I hope DS is able to regulate at home and you both have a restful week

viking schools response must be frustrating and disappointing for you.poor ds.

The girls had a long weekend off(teacher training gets tacked on Friday and Monday end November which is a nice pre Xmas break)lil zoo has been in pain on and off the whole time,so how can school consider it school avoidance if it's not just on school days?and if it is psychological it's still painful to her☹️I don't know what to do for the best.theh expect her in school every day from tomorrow

Viking I’m sorry the school put you in that situation. I’m glad the police were understanding.

Zoo even if the pain is still present on non-school days it may still be related to emotionally based school avoidance. The physical symptoms of psychological stressors can be present even when the psychological stressor isn’t present at that precise moment. But, as you say, that doesn’t mean it isn’t painful. I really think you need to push for medical needs tuition and apply for an EHCNA.

Could I rejoin this thread please? I've been on a couple of times in the past under different usernames

DS (13) has started school refusing again (I know this is not correct term) this week after a really good year- we went through a terrible time from year 5-7 with school related anxiety/refusal and general depression/low mood.

I'm waiting on contact from sendco but I feel massively anxious, my mental health suffered badly previously, trying to juggle work etc while worrying about him/hours spent in the morning trying to persuade him in. I know I'm likely overreacting and on the surface I'm doing my best to stay calm and be understanding of how he feels but I could do with some talking down as I'll be no use to anyone if I spiral. I don't feel like I can cope if we have to go through all this again....

Hello @takingtime2
I'm sorry school anxiety has reared its head again.
It's so so hard and completely understand why you are worrying. It does really an emotional toll on everyone coaxing DC to go to school.
I hope tomorrow goes well and this is a brief interlude. It won't necessarily be the same as before.
Remember a lot of this ( Perhaps all) is not within your control and its certainly not your fault ( or your sons)
So be kind to yourself and DS.
Does DS have any diagnosis?
Many autistic children find school hard to cope with , my own DD was diagnosed with autism at 14 which was only suspected after school refusal/ avoidance made it clear she just couldn't cope in a mainstream school.
Also does your son have an EHCP?

If not perhaps you need to consider this and discuss it with senco especially as he also struggled in years 5-7.
Do you know what's triggered it this time? Has DS been able to offer any insight? Although sometimes/ often there is no rational explanation.

Might be worth trying to get a referral to camhs, school or gp might be able to advise on this. Also school maybe able to refer to early help service.
Just write down everything you want to raise as it's easy to forget in a school meeting and ask for what interventions can be put in place ( if they aren't already) quiet safe space, permission to.leave class if overwhelmed, a named member of staff to check in with etc
You got through this before and will do so again, although its tough now it will get better.
If you are struggling please see your own GP and try and also take some time out for you to recharge yourself as you really can't run on empty . Do you have any support IRL?
There's a lot of support and excellent advice on this thread so please do post if you need to reach out.