Parents and carers of anxious teens(part 7)

[Stilllivinginazoo]

Goodness,seventh thread!
Welcome back to those who have been on board with me since the days DS was first struggling,and hello to new faces

This thread is for those who care for anxious teens.some of us have diagnosis of ASD/anxiety/depression,others are encountering and navigating escalating symptoms that are starting to prove troublesome

This is a safe,non judgemental space to share ideas,offload worries and provide support and kind words for those deep in the trenches

We get how utterly exhausting it can be and are not afraid to celebrate the small wins that in regular circles would be deemed as insignificant as participating in "normal activities"

@DarkChocHolic Ah, sorry for mentioning it again. I hope the appointment tomorrow goes well.

Finding the right medication takes time. DS1 tried 3 other antidepressants before settling on Mirtazapine, and he has tried swapping Risperidone for a couple of other antipsychotics to see if they help more but then swapped back. He tried Lamotrigine, which is sometimes used as a mood stabiliser. And he has tried lots of medications to help with nighttimes.

@1spinforward2back
Oh please don't be sorry!
I meant it in a nice way. I held that thought ever since you mentioned it and it has given me something to focus about and to double check.

Agree that it is a trial and error.
No such thing as a magic pill unfortunately.
It's so hard to put their bodies through all this and I worry of the long term effects
But equally, DDs life at the moment is heartbreaking to watch.
Hopefully something will help.

Xx

@DarkChocHolic misdiagnosis of females is such a big issue even now. Too many fly under the radar.

For us, not trialling medication wasn’t an option. DS1 was attending a CAMHS unit as a day patient and medication prevented an inpatient admission. DS1 takes a lot of medication for physical health conditions, so he sees them as just another few.

I'm struggling this morning. My DH and I are absorbing the anxiety which is pouring our of both DC on a daily basis. DH was signed off work for 2 weeks and goes back today. He looks a wreck,.sleeping badly and struggling to concentrate. He has gone in to set a good example to the kids but I'm just as worried about him.
I sent an email a couple of emails last week to 2 different teachers about my son. Both have been ignored. I think I've been labelled as a difficult parent now and am rapidly losing their respect. I know DS is still being bullied but he won't let me speak to teachers as he thinks the other kids will know is has snitched. I have no idea how to navigate this to be honest. It's all such a bloody mess.
I've got someone from a local Autism charity ringing me tomorrow to discuss EHCP application. That's something at least. Except for one friend, no one in real life knows the extent of what is going on. I feel quite isolated in real life.

@theordinary
So sorry its really hard right now. I really hope DH has a better day than expected.
The bullying thing is really hard. As a parent you want to fix it , contact school( which is exactly what I did!) However I've since read that if your child asks you not to tell school you need to respect this so they feel able to trust you and then feel safe to open up and talk to you.
Being able to trust you is key but I m not underestimating how hard that is!
Are you and DH getting any support, counselling , perhaps medication to help with sense of overwhelm and anxiety. Trying to make time for you is really important even something simple like sitting in garden with a cup of coffee or a bubble bath.

@Theordinary
So sorry you are feeling helpless and isolated.
You are not alone.
Hope the charity is able to help with ehcp.
Hope your dh copes at work. Sometimes being away from the situation helps.
However, we cannot expect to set an example to kids that we are still expected to do stuff when depressed.
Something I learnt in the Parenting Mental Health book "Never Let go".
It's so hard though..
I hope you can take yourself out for a few hours as a distraction.

I filled yet another absence request today.
I despair looking at the attendance record!
What is even the point anymore.
Hope we all cope today.

Xx

Just catching up with the thread.
I agree so many DC manage to mask until they can't and fall under the radar of ASC or ADHD diagnosis .
DD was diagnosed with autism at 14, if you told me when she was 7 she was autistic I wouldn't have believed you- just didn't see any if this coming. Tbh I think we are an undiagnosed ND family!
We were told by nelft/ nhs after a initial screening process DD doesn't meet criteria to receive a ADHD assessment. But several other professionals , psychiatrist,OT, SALT, SENCO have mentioned that they think she has ADHD- so it's confusing.

She is on flurexotine and quetiapine . Medication has helped but its trial and error and a long journey finding right meds and right dose.
Tbh I'm still not sure it's entirely right.
I do feel awful sometimes putting her tablets next to her breakfast- but I know they are helping even though they aren't a magic wand.
I also worry about longer term and if more serious MH issues will develop. My dad had schizophrenia.
My worst nightmare is DD developing that.
I also feel guilty as I was going through a difficult time when pregnant with her so I was very stressed, anxious and upset. Did this impact her, lots of studies say it may. So feel its my fault shes struggling.

However she's in a much better place than 2 years ago. But still struggles.
We've had a busy weekend and she hasn't made it to mindjam this morning ( which is normally a dead cert) as she's too exhausted/ drained the after weekend. And yet before puberty she would have coped with it. If I'm honest I still don't understand how or why it all changed.

Anyway I'm rambling!
I hope you all have a good week.

@Runnerduck34 , I'm wondering whether we are a ND family too. Both kids, DH, likely ADHD and Bipolar, myself lots of ASD traits. I understand the worry about inherited mental health problems. Sometimes when I see DD pacing around and talking non stop I have this awful fear she has Bipolar too. Its too easy to catastrophise isn't it?! Please never think it's your fault.
So DH came home at 9am admitting defeat. Going to be signed off for longer. Phone call to 111 and has now got a referral for mental health team. Will be possibly looking at starting some meds after about 8 years on nothing but lifestyle interventions exercise, meditation etc. I guess when things get bad you need the big guns eg. Mood stabilisers. It does seem like a shame after all this time. I think someone might have mentioned Lamotrigine? It looks like a possible alternative to the Quetiapine for him. Anyway, I digress as this is supposed to be about the kids!
On the plus side DD has managed a full day in school which is a massive bonus. Also she is out at a friend's house. We've not been brave enough to tackle the bullying issue with DS. He came out from school pretty chilled and we didn't want to upset him. He tends to fly off the handle when we ask him about anything so it may be wise to bide our time.
@DarkChocHolic I'm definitely going to buy that book, it sounds good. Don't worry about the attendance record, I know it's so demoralising. I do hope they are recording the absence as sickness though?
I hope everyone has had an OK day.

@Theordinary no shame in DH accepting he needs help of medication.
It's positive he recognises it and reaches out for support, but i understand it can feel like a step back however you are both dealing with a diffcuIt situation- supporting DC with MH issues and can and probably will bring most parents to their knees. I hope he feels better soon. Make sure you look after yourself too.
I'm pleased both your DC have had a good day.
My DD also picked up after a wobbly start and managed her english lesson.
Always gives me a lift when DC have a good day. Unfortunately the reverse is also true!

@Runnerduck34 , I'm glad your DD had a good day yesterday. DH was saying just the same yesterday about how their moods can either lift his or send him spiralling down. It's so difficult. It's like we're all absorbing the emotions in the house.
Off to the GP with DD this afternoon and I'm hoping I can convince them to take over the Fluoxetine prescribing, otherwise it's going to cost a fortune.

Hello everyone,

As the saying goes 'you are only as happy as your unhappiest child', it's a saying I absolutely loathe. But it pretty much sums up the last 5 plus years of my life. I do my best to carve out moments of calm for myself and have got pretty good at departmentalising different aspects of my life for my own sanity. I am not sure it's always a good way of dealing with things though.

I am sorry to hear some of you and your dc are going through a tough time. It is isolating as you don't know who you can 'trust' to discuss the struggles especially as parenting sometimes feels like a competitive sport at the school gates. Things continue to be tough here too, the trip was not great but also not as terrible as I feared. DD came back exhausted though as there wasn't much downtime. Her pre-assessment consultation came back as very likely to be ADHD. There are autistic traits too. I am letting this sink in. Will probably go ahead and sort out the formal assessment as she mentioned that often anxiety goes hand in hand with ADHD, and the medication can often help a fair bit with the anxiety. Listening to her, I can now see why school has been so overwhelming, the masking has taken a terrible toll.

I suspect we are also a ND family. Anyway, I hope the rest of the week is better for all of us.

@Theordinary glad DD had a positive day yesterday. It was me who mentioned Lamotrigine. DS1 tried it. He had to stop it, but it helps some. On their website, IPSEA has a model letter you can use to request an EHCNA. @DarkChocHolic have you thought about requesting an EHCNA, too?

We are definitely a ND family I have 2 DC with ASD, another awaiting assessment for ASD and ADHD, DS1 who has other complex needs, and I also have ASD.

DD did 5 days last week (variable hours) then refused to go in yesterday. She then went in late today, had a great time and is super happy again.
Ive asked school for a couple of sessions with support staff, she had loads last year when she didn’t go to lessons but it stopped when she went back. I think it would help turn thing round for her as she needs that individual attention.
now I’m worried that this is such a short term, holidays always mess things up for us.

Am glad for those who had small school wins with their DC.
School or not hope they are less anxious.
I have a meeting at DDs school tomorrow. It won't be good news I know which is ok by me.
But I am shit scared it will trigger dd big time. She doesn't want to leave school neither is she able to go.
She is so far detached from reality its unbelievable.
Am wondering if the fluoxetine has this effect. She is almost as if she has regressed several years in brain power. Its seriously worrying.
I am so tempted to start the anti psychotic tomorrow but we now have the adhd assessment finally booked in for 2 weeks time.
Part of me wants to rule that in or out before I start more medication.
I am so torn!

I have thought about ehcna but the point is dd is so against fresh start I almost don't see how that will help.

Hope everyone gets some sleep tonight.
Xx

@DarkChocHolic , I'm glad you finally got a date for the ADHD assessment. Would the psychiatrist support you waiting until after you rule adhd in or out? I would imagine that the antipsychotics would really mask a lot of the ADHD traits and Impair the assessment. I'm not a Dr though. I think the way I'm thinking about the EHCNA is that it will give my DD a bit more time to be in education without us having to pay for it. I'm so worried she's not going to pass her GCSEs. She's not going into school again today, still so anxious. Took her to the GP and she couldn't even answer the questions. Just sat their like a rabbit in the headlights. She seems so much younger than her 15 years and I realise how much she has regressed lately. The only good news was that the GP was happy to take over the prescribing of the Fluoxetine, so I was pleased about that.
@MinionKevin , the school should provide those support sessions if they helped before. She did well to go in as much as that, I hope they can support her better.
@1spinforward2back thanks for reminding me it was you who'd mention the lamotrigine. Did your DS get side effects if you don't mind me asking? DH looks a state this morning. Really low, and now a nasty cold to really top it off! Just waiting for his appointment with the mental health team. I'm going to really give it my all for the EHCP for DD. Going to contact Sendias today.
@Okisenough my DD had the pre screening for ADHD as well and it came up with traits of mainly asd but some ADHD. Stupidly we only assessed for asd as we felt it was too much money to do both. She was assessed as asd. I bitterly regret not testing for ADHD as well now as I can see how much she struggles with focus and concentration that I'm sure she has both like my DS. I hope you don't have to wait too long for answers.
I'm so bloody tired of it all today and it's only half past 7! Wishing you all a peaceful day xx

@Theordinary yes we are in the same boat in terms of the cost of these assessments. Our psychiatrist told us that after doing the prescreening, our dd could choose to self-identify as ASD to avoid the cost of the assessment which is what a lot of people are doing now! This made sense as an ADHD assessment is needed to access medications. Is there any chance you can get her an assessment through the GP? Been sent the report and dd has also been assessed as having severe anxiety and bulimia, the latter is getting better but I honestly don't know how my dd is still standing. I knew about these things and had inklings about the ND but seeing it written down is like a dagger in the heart. Her counsellor had been working with her on the eating disorder but with everything else I don't think I took it as seriously as I should have, I do feel like I let that ball drop and didn't bother to pick it up again.

Wishing all a calm day xx

@Theordinary glad the GP is taking over the prescription. I hope your DH gets seen soon by the MH team. Good luck with the EHCP. I know how much of an admin overhead all these appointments, meetings, Dr visits are.
Amazed at how much we have to cope when so many things get thrown our way.
You are right. I should hold off starting the anti psychotic until after the assessment.

@Theordinary
I totally get what you mean when you say your are upset on reading the report.
My daughter's GP report after her first visit left me in tears and this was even before CAMHS etc.
Though we know exactly what is going on, it is still a dagger through the heart.
please don't beat yourself. You haven't dropped any ball.
Sometimes, the only thing that can help in situations like this is "Time".
I read somewhere "You have to give Time, Time" and that makes sense in a lot of these situations.
Things have to run their course. Medication takes time. DC have to grow brain cells they lose in adolescence anyway.

Off to DDs school now...have popped a couple of rescue remedies myself!
Xx

Also, would anyone be willing to share their experiences of what happens in ADHD/ASD assessment.
We have done all the forms and had the pre-assessment with the psychiatrist.
I was with DD for most of this meeting.
In the actual assessment, is it more of the same?
I worry if DD is on her own, most of her responses will be "I don't know", "I guess" and "Sometimes"

@DarkChocHolic thank you for your kind words and hope the school appointment went well.

@DarkChocHolic My DD had the asd assessment in September although not the ADHD one as I said. This is how hers went. My husband and I were interviewed by the specialist paediatrician. She went right back to the pregnancy, birth, baby and early years. There was lots I couldn't remember to be honest but lots came back to us that we'd previously forgotten. Then she asked about the current situation and difficulties. Whilst we were with her, DD was taken off with a specialist SALT and a clinical psychologist and they did the standard assessment. This involves lots of observations whilst they got her to do a variety of tasks. It sounded like they were quite skilled at observation as DD didn't understand why she had to do some of the things. From that they were able to see how she interacted and communicated with them. The whole thing took about 2 hours in total and they brought us all back into the room to deliver the diagnosis. I got quite tearful when they confirmed she was autistic. I still carry a lot of guilt that we missed it for all those years.

Also, meant to add... If your DD doesn't respond or freezes up it won't matter. They are so skilled and this will form part of the assessment in itself. My DD was not great at reciprocal conversation and this was extremely revealing in itself according to the report. I think the process is pretty standard. I know she was really miffed that they showed her a child's picture book and asked her to explain what was happening, eg to make up a story. She found it really babyish. When she got home and compared notes with my son (who had an NHS assessment) it was very funny as they'd had an almost identical experience. It was quite sweet to listen to them comparing notes! Sorry if that was a bit long!!

@Theordinary
Thank you!
This helps get an idea.
We have had the detailed discussions from pregnancy, birth and milestones.
I suppose they will be repeated again.
It helps to prepare mentally what will happen on the day.

Xx

Hope everyone is OK today.
My DD went in for a full day on Monday and it has been a disaster since. The worst thing we could have let her do. She's massively struggling now with her anxiety and seems so low and irrational. She thought she could manage it but it's sent her spiralling down. Still on 10mg Fluoxetine and about 10 days in.
I have a few questions if anyone can advise?

1. Should she be doing bits of school work while at home? (year 11!) or should we completely stop it for now. She's already only on target for 2s and 3s in her GCSEs. The least of our worries but still a concern.
2. Is there any point applying for EHCPNA in year 11? What happens if she's left the school and is at college by the time the LA decide to do the assessment?

I'm a bit unsure whether to do it now.

@DarkChocHolic assessment processes vary area to area, provider to provider. A good ASD assessment will involve a multidisciplinary team. Often assessments such as ADI-R which is an assessment looking at developmental history with you etc. and ADOS which is an assessment comprised of several tasks such as completing a puzzle, role play are used. Don’t worry about DD responding with ‘I don’t know’ etc. you will be amazed at what they can pick up in assessments like ADOS and it isn’t all about what is said but how/non-verbal communication. ADHD assessments often use the QB test &/or DIVA.

it was very funny as they'd had an almost identical experience.

This is the ADOS. It is brilliant at what it can elicit.

@Theordinary still request an EHCNA. EHCPs can continue until 25, or 26 in some cases. Moving to college doesn’t matter. In the meantime, if DD can’t attend school request medical needs tuition. If DD can manage completing work at home, brilliant, but if she can’t manage formal academic work I wouldn’t force it.

Lamotrigine caused problems with DS’s liver function blood tests so he had to stop it.

@1spinforward2back
Thank you. This is helpful.
I think we are in good hands with the psychiatrist who will be doing DDs assessment.
She is quite senior and has worked in camhs for a number of years so hopefully isn't one of the ones who offer diagnosis when not warranted.