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"

@Okisenough
Glad you are seeing little glimmers.
We all need that to keep going.
What dose is DC on currently?

We are now in 36mg and it's been a real nightmare to get hold of meds.
We have already had to switch brands as we cannot get the same one.
I will try the protein at breakfast.
Unfortunately dd doesn't like eggs in the morning but maybe I should look for a protein shake.
She seems OK generally but for dry mouth and a racing heart at times.
We are also noticing the dark moods are a bit less. Self harm and suicidal thoughts are greatly reduced which itself is a huge relief.

@DarkChocHolic I am glad you are also seeing some benefits from the meds. We are on the same dosage as you, but only just started on that level. My one just eats a protein bar, probably not the healthiest choice but it works for us!

Morning All, I hope everyone is having an OK week. We're still off on the Easter break. It's been a frustrating and boring week. DD has been sleeping in until lunchtime most days. In the evenings she's been writing some ill-advised and impulsive things on her insta page. Also done strange things like shaving off her eyebrows. Her bedroom is chaos as usual. She switched all the funiture around! I have to write her step by step instructions or she can't organise herself. We had an appointment with the Psychiatrist over Teams. She is convinced that DD has comorbid ADHD as well as Autism. Does anyone recognise these behaviours in there ADHD teens?

I'm kicking myself so much as we could have tested her at the same time as the asd assessment but we were feeling a bit skint and decided not to. Now it's going to cost lots more to do it as a stand alone test. No chance of an nhs assessment in the next 3 years so I don't think we have any choice but to get her assessed privately. The next worry is will the NHS accept a private diagnosis and provide ongoing care.

@Theordinary
Gosh! I recognise so many of those behaviours...the eye brows, the impulsive things on social media, the rearranging of furniture, sleeping all day and all night.sounds exactly like my DD who has major issues with emotional regulation because of ADD.
Holidays aren't going well here too..
Lack or structure, no friends to call om all lead to boredom.
Any efforts of me arranging to go out are refused by DD.
I am at a loss.
We have had a dose increase of add meds and that seems to have upset her.
She was doing better on the lower dose.

I hope you manage to speak to doc a out DDs diagnosis.
It is hugely frustrating watching them.
Hope you are OK.

Xx

@Theordinary
Camhs have accepted our private diagnosis as it was done by a local psychiatrist who works in the children's hospital in the area.
Can your GP agree on right to treatment or something like that?
Xx

@Theordinary emotional deregulation, exhaustion and a chaotic bedroom were all behaviours displayed by my dd. Speak to your GP in advance about whether they are ok with taking on shared care. We are not at that stage yet but our GP said they would have no problem with sharing care once dd was stable on her meds. If you have more than one GP at your practice, try and find the most sympathetic one, it makes life a lot easier knowing, they will support you and your child.

@DarkChocHolic @Theordinary I am sorry to hear both your dds are having a frustrating Easter. It is difficult to know what to do in such a situation and any attempt at helping often are unwanted or lead to worsening mood.

Our ADHD medication journey is going well. Again I don't want to jinx things but I feel medication is really helping. I no longer feel we are all walking around on eggshells and although I am still careful with how I phrase things, they haven't exploded at things anyone has said for a while but now react more 'normally'. They have also been more willing to engage socially, are less stressed with their school work and exams and seem to be less overwhelmed in general. She even tidied her room and cleared out unwanted items! Things are not perfect but I am more hopeful than I have been in a long long time.

@DarkChocHolic and @Okisenough hello! That's really interesting that you can both relate to how I've described my DD's behaviour. I'm going to press ahead for a diagnosis. The problem we have is that the screening forms for camhs went off to the school and I think they minimised everything. Camhs have now said DD doesn't meet the criteria for screening. To be honest she does such an amazing job of blending into the background I doubt they would have noticed any ADHD signs at school. She's definitely the inattentive type if anything. The funny thing is, my son's primary school did exactly the same and the paediatrician was suspicious of the school's responses. He sent them back again and second time they did it properly. His QB test was one of the worst for inattention that the consultant had ever seen. Question is, will we get a diagnosis without the schools input? What would a home schooled child do for example of signs have to be shown in 2 settings?

@Theordinary
Our school forms were very bare too.
Most were answered as not observed
They did state how she is behind and how she would rather finish first than talk more and do more..
DD also did not meet the threshold for camhs.
However, the letter from camhs came after the private diagnosis.
The camhs psychiatrist herself saw ND traits in DD, so she agreed to the private diagnosis.
My DD is very much an under the radar person.
I could however give several examples of how she struggles with focus and examples of impulsive behaviour.
DD cannot sustain focus in anything..not even binge watching her favourite TV shows.

@Okisenough
Glad the meds are being helpful.
I know what you mean about being hopeful.

We have hit a blip. But we tinkered with sertraline dosage so I cannot tell for sure which medication needs a rweak.
It is also the week before DDs period so I am waiting to observe more.
I don't like the holidays in a way as DD has nothing to do.
But school days give me more anxiety about getting her out in the morning and constantly being on watch if the school will call.
I cannot wait for her to finish 6th form - even if she comes out with no qualification. I believe her healing will start next year.

How is everyone?
Is it better or worse now holidays are over?
Just catching up on the thread. Really interesting about ADHD .
My DD is autistic- several professionals ( tutors, SLT, OT) have said they think she also has ADHD but she didn't meet criteria of camhs screening forms- even the psychiatrist ( that has now left) was taken aback. Chaotic bedroom, impulsive behaviour, highs followed by lows ...
I did think about private diagnosis but yet more money and I've kinda lost the will....
Agree school forms are not great, DC mask and does any teacher see them for long enough to notice and observe behaviour to fill out forms accurately.

DD is in the middle of her Art GCSE-3 consecutive and last day tomorrow- so far so good fingers crossed!
Although re ADHD, every day she has forgotten something and I've had to email photos of practice work or drop off materials- despite me reminding her before she leaves and her swearing blind she has everything!
Anyhow just bloomin proud and amazed she's gone in!

Had PIP telephone assessment for DD2 on Monday- took over 90 mins.
We dont have a loads of evidence- she has asc diagnosis but that's about it. Anyway we will see.

Work is manic and I feel like I need a break- we had a lovely few days away over Easter but seems like a distant memory now.

LA have finally issued DDs EHCP as amended by tribunal- just took them nearly 7 weeks.
Now I'm trying to get the personal budget so it can be implemented.

Anyway thats a bit if a ramble! Hope everyone is OK.

@Theordinary the NHS can’t refuse to accept a private diagnosis. However, the GP doesn’t have to take on shared care of medication, so if affording private scripts on an ongoing basis is too much then be sure to speak to your GP first.

DS2 has recently been diagnosed with ADHD and is awaiting an ASD assessment. He is very impulsive and displays risky behaviour made worse by him being a huge sensory seeker. This seems to have come to the fore over the last 18months-ish which is what prompted use pursuing an assessment.

@Runnerduck34 I hope Art GCSE goes well. For PIP, did you send DD’s EHCP? That is significant evidence on its own. My LA hasn’t finalised DS3’s EHCP yet either. I have threatened JR. They are ignoring me.

Thanks Spin, Art GCSE did go well-Phew! Has boosted her confidence:)
PIP is for her older sister at uni so no EHCP, hopefully we have done enough.

So frustrating you havent got finalised EHCP- how many weeks is it? LAs just seem to stick 2 fingers up at the whole process and there is no accountability- I hope you get the finalised version soon.
Although we now have finalised version we are waiting for funding., apparently the manager did not complete the form to release the PB correctly and is now on holiday , no one else can fill it out and sign it .....
Hope everyone has a good week

We’ve had a peaceful few weeks mostly. Easter was okay and we even went out a few times and DD went to a friends even.

Struggled with going back to school and didn’t make it the first or second Monday. But today she went in for a long day which is amazing, hopwfully will do 5 days.

the main thing we struggle with is, is DD needs constant activity. She does a lot of different forms of art, it’s exhausting finding things to keep her going though. It’s actually worse when she is doing okay with school and is stimulated, it’s like she needs it even more.

enjoying my peaceful day anyway.

@Runnerduck34 oops, that’s my poor reading, I didn’t read DD2 and just read it as DD. Sorry. Does DD get DSA? If she does, she could use the support from that as evidence.

Hurrah for a good Art exam. That is amazing. I would be threatening JR for funding. There’s no way only one person in the whole LA can sign it off. What if they were on long term sick leave or left?

It is nearly 6 weeks now. I have threatened JR and have a pre-action letter ready to go tomorrow.

@MinionKevin I hope today goes well.

the main thing we struggle with is, is DD needs constant activity.

I have 2 DS’s who are like this. They need to be doing something constantly. We manage it via a huge amount of sport/exercise. DS2&3 do a lot of extra-curricular activities. We have some exercise equipment at home and trampolines (indoor and outdoor).

Yes a neighbours child spends hours on a trampoline. I can’t get DD into any sport though. It has to be art, creative stuff. Sometimes I just run out of ideas!

Hope you enjoyed your peaceful day Minion!
I am currently looking at a living room filled with Art stuff and really need to tidy it up. On the plus side your DD sounds really motivated so in a way thats good (if tiring)- we all struggle with motivation in this house😆

Good luck Spin- its absolutely ridiculous you have to do a JR letter. I hope LA respond.
Re our PB- I know I did ask if anyone else can sign it off and was told no- has to be our area manager- If its not signed by end of this week I will also be considering JR- I just am fed up with the constant excuses and delays- someone recommended a solicitor to me and I know sossen do it too but I think theres a wait to access their help- mind you I think there is a shortage of sen solicitors too.
Yes DD2 does get DSA- I did submit it as evidence but then was worried the fact she goes to uni could be held against her!

DD3 been down and didnt manage her all of her lessons today -I think the exam has left her burnt out- highs followed by lows- even after all this time I still yearn for everything to be "normal". CAMHS appt tomorrow, the meds shes on are making her sweat a lot but not sure if there is anything that can be done about that,

@Runnerduck34 I hope the appointment went OK.

The swings from high to low and back are exhausting, aren’t they? They must be even more exhausting for DC.

If DD2 has a F2F/phone/virtual assessment they often ask about education and her going to university would come up anyway, so don’t worry about sending the DSA evidence. DD2 manages university because of the support. If she didn’t have that support she wouldn’t be able to manage.

So your LA does have someone else who could do the PB sign off, they just don’t want to have someone else do it because they aren’t in your area. Tough luck! That isn’t a valid excuse.

@Runnerduck34 I am glad to hear that the art exam when well. Congrats to your dd. My house is also full of art stuff, every surface has something on it and no idea when it will ever be cleared up. Hope PB has been sorted now.

@1spinforward2back I hope LA have responded and things are moving forward.

To everyone, I hope this last week back at school has been ok and any exams/meetings/assessments have gone well.

Things are still going well on the medication, and I sometimes can't believe the difference. There is still a long way to go. However, decreases in anxiety, stress levels and emotional deregulation, means that my dc has been able to engage with counselling more. I am hoping this will help them incorporate other things like exercise and meditation into their life.

I am totally exhausted, after 8 plus years of being on high alert, I think my brain and body has pretty much gone into shutdown. Need to shake myself out of this though as exams are around the corner.

DD went in for 18 hours this week and no issues. It’s like a miracle. Only last year we might do a handful of hours over the week.
That’s not all class time, some of it is working with TAs. But it’s amazing. We’re trying to add a bit more time onto that as well.

I told DH and all he said was ‘how many hours is she meant to do’ not helpful.

@minionkevin
That is a fantastic progress- worth celebrating. I hope this week also goes well.
Sometimes they have a slump after a good week.

DD has had a good week too but even after all this time still needs time to recoup- today she had science at home then was meant to into the tuition centre for English and fell asleep - the EOTAS package is a bitty / disjointed which doesn't help.

I contacted a solicitor today re JR pre action letter. More money:(

Still waiting for LA to issue a complete EHCP following tribunal decision in February-second version they issued was still missing section E outcomes and part A was an old version from 2021- totally outdated. just don't know how they can be so incompetent!

Also no progress with my PB request so new provision still unimplemented. Just feel fobbed off.

To top it all LA have called an annual review!

Spin how are you getting on following your tribunal. Have you got it all implemented? Did you have to resort to pre action letter?

Hello all. Have found this thread after a gruelling few months with my DS, who is in Year 13. He had a bout of terrible anxiety and school refusal back in years 8&9, and on the school's recommendation we had him assessed for ASD but that came up negative. He seemed to recover after that though, reentered school at Y10 and went trough to Y12 fairly comfortably. The only niggling concern I had was that I could see he found it hard to get his work/revision done, but as he seemed fine I didn't sweat it.

Flash forward to the start of this school year and he's been struggling again. He actually attempted suicide before Christmas, which came out of the blue - we'd had no idea things were that bad. Since then he's been referred to Community MH because he's since turned 18, but because the NHS service is so overstretched he's has been sitting just with some anti depressants to help keep his mood stable and that's it - we're still no closer to understanding why he's struggling than we were the first time around a few years ago.

I am tempted to go private but I have no idea what he'd need! All the private options seem to expect you to have a suspected diagnosis in mind. He has depression, he's dyslexic, he doesn't have ASD, he might have inattentive ADHD - and I don't want to lose his NHS place. How do people find their way to getting their children the help they need? It's so dispiriting.

@TartrazineCustard
Hello, sorry you and your DS are going through this difficult journey.

We struggled to get help via CAMHS do initially went private.
We saw a Psychiatrist which was very helpful.
They should also be able to recommend looking at ADHD or even ASD again or other conditions if appropriate.
And make recommendations for correct type of therapy , and prescribe medication but sounds like DS has that - did GP prescribe or nhs Psychiatrist?
Anyway an appointment with a Psychiatrist would be my first call.
I think sounds like DS has been masking until suddenly he couldn't.
I hope he gets the help and support he needs, it's such a worrying and stressful time when your DC are so ill.

@TartrazineCustard, like @Runnerduck34, if you want to go private I would start with a general psychiatrist appointment.

@MinionKevin how is this week going? Don’t be disheartened if there’s a couple of steps backwards. As Runner posted, that can be normal.

@Okisenough I hope meds are still going well. For DS1, medication isn’t a magic cure but has been well worth it. It reduced the rapid swings from high to low and back again, and the lows weren’t quite so low. It improved DS’s engagement with life and therapies (prior to medication he couldn’t engage with life or therapies at all), his communication (he was verbal but struggled to communicate because of his anxiety and has SM, he still struggles but not to the same extent), physical health improved, self injurious behaviour reduced significantly.

@Runnerduck34 sorry you still haven’t got the EHCP sorted.

DS3’s package isn’t yet in place. We received the finalised EHCP yesterday following a pre-action letter sent last week. I’ve chased the PB agreement and some provision needs organising. DS3 needs closure, so his last day at school will be tomorrow (he’s at the AP today and Friday).

@TartrazineCustard hello and I am sorry to hear about you and your DS, I hope you get some comfort from knowing you are not alone. I would second the advice given by Spin and Runner. We also didn't get very far with CAHMS and our GP advised us to pay if we could afford it! We eventually went to see a psychiatrist about ADHD but in the initial meeting, she did also discuss other issues including anxiety, EDs and the possibility of ASD, from my experience, they won't just stick to what you might think it is. You also don't need a GP referral so you shouldn't lose your place on the NHS.

@1spinforward2back Yes, we are seeing similar progress on medication. It doesn't solve everything but I feel that now she is less exhausted and overwhelmed she can start taking little steps.

@Runnerduck34 I really hope you hear from the LA soon regarding EHCP

And hope everyone who is just reading this thread is doing ok.

Morning all, thanks for your kind words yesterday. I've been slowing reading back through the thread and looking at everyone's situation. It's so stressful looking after your child when their mental health is poor, isn't it? I've spent this morning wondering if I should contact the GP myself, as I'm starting to feel really worn down trying to fill in the gaps in the non-existent Community MH team care and DS's school needs.

Today DS has gone into school late. He's got some flexibility in his schedule so sometimes that's okay, but I've checked and today he's missed classes he should have been in (the ones he's been saying are going well!) and I have no idea why. He lied to me this morning about when he could go in. I am so miserable - he's changed so much in the past six months, it's like my conscientious boy has just given up and I don't think either of us knows why.