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"

@MinionKevin
Really glad things are better with attendance.
When they are able to, they will!
Until then, nothing we do will work.
I have seen that with my DD.
Hope things continue to progress.

Xx

@MinionKevin thats great news! Sounds really positive progress.

We received DD's autism diagnosis today.
I was a bit stumped to be honest. The inattentive ADD I was prepared as I noticed all the signs.
This one has taken me by surprise.
It was done by the intensive home treatment team who looked after us for the past few months.
Poor girl...just thinking how hard she must have found things and pretending she was normal like everyone else.

Xx

I had a similar reaction. I expected ADHD but was a bit more surprised about the ASD.

@1spinforward2back Thanks. Exams are going well so far, long may that continue. At the moment, things are relatively calm here, and I think overall she is in a better place, knowing that school is more or less over has been very therapeutic.
I have never looked into an EHCNA, partly because I didn't know anything about them and because DD has always been academically fine at school, so she flew under their radar.

DD will look into what help/adaptations she might be able to get at University but otherwise we are just going to carry on trying to sort things out on our own.

@DarkChocHolic
DDs Autism diagnosis also shook me up a bit.
Even though I was kinda expecting it ii still felt a bit tearful about it all.
It take time to process.
How does your DD feel about it?

@MinionKevin brilliant progress.

@DarkChocHolic it can be normal to be taken aback by diagnosis even if you were expecting it, so if it took you by surprise it isn’t surprising it has been a shock.

@Okisenough if DD is starting university in September has she applied for DSA?

Can I pick collective brains?
Has anyones DC been prescribed propranolol?
My middle DD who has just finished her first year at uni but is really anxious and struggled to settle has just been prescribed it by GP and told to take it daily. She does experience nausea etc when really anxious but doesnt really get panic attacks as such. What she really wanted was a medication to smooth the edges so to speak and improve her underlying anxiety on a daily basis so she can join societies, socialise, use the kitchen at uni when someone else is there, etc as she spends most, of the time in her room at uni apart when not at lectures, and also to help stop her overthinking and worrying. She has autism.
Anyway I guess I was thinking she would be prescribed something like Fluoxetine, sertaline, citropram etc as from my (limited!) experience Id heard Propranolol is used as and when experiencing a panic attack.
Has anyone elses DD been prescribed propranolol as a daily medication? DD hasnt been on medication before.
I guess Im just wondering why the GP prescribed this medication- Im probably overthinking lol. Any advice or experiences appreciated.DD is anxious about taking it.

@Runnerduck34 my daughter uses it and she was advised to take it as and when needed. She took one daily during term time but I think you can take it several times a day if required (check with GP). It works on the physical symptoms of anxiety so can take the edge off and make it easier to cope. From my conversations with the GP, it is like the first drug they try as it has less side effects and is pretty safe. My dd found it helpful but looking back it probably wasn't enough to make a significant difference. Her anxiety has improved with the adhd medication and we still use propranolol when she feels she needs it.

@Runnerduck34
The camhs psychiatrist would not prescribe propanalol for DD.
She said it was not a drug she likes to prescribe and I am not sure why.
We sometimes use rescue remedy for this. Not sure how effective it is but DD seems to think it helps.
This week DD was experiencing anxiety as its her mocks next week and was in tears. She said she didn't want her sertraline dose upped and instead used rescue remedy.
I hope you DD gets something to help.

I hope everyone is doing OK and had a restful week.
We are bobbing along with normals and downs.
Adhd medication is helping and we have had to add a small dose of anti psychotic for mood stabilisation too.
However, DD is struggling when the adhd meds wear off in the evening and would like something till about 10.30.
We would need to speak to the psychiatrist at the next review.
She is on 36mg extended release. Not sure if she will benefit from a split dose during the day or a small top up around 7.00 pm
School and friendships are still a big trigger. We may have to restart y12 based on how mocks go. She was very against it initially bit acceptance is slowly setting in
Next few weeks will be a test of my patience, kindness and positivity skills!!

Xx

@DarkChocHolic we are on the same dosage extended release, the only thing we do is take the medication as late as possible in the day if we know we need to be doing something in the evening. From those I know that have it split (more necessity due to med shortage rather than choice), they found the mid-day wear-off unhelpful, and the child then often forgets to take the next dosage. An evening top-up might be a better idea. Good luck with the next few weeks.

@1spinforward2back I need to do more reading about the dsa, as well as prod dd to look into what help is offered by her chosen university. Realistically that will probably mean I will look into it lol

@Okisenough
Mid day wear off at school maybe a nightmare!
You make a good point.
I think a top up may work better but I worry it will impact sleep and eating.
Also it's such a struggle to get hold of medication because of stock issues and it would be a faff to add one more.
Are u facing the same?
I am wandering from pharmacy to pharmacy hunting the meds in the weekends.

@DarkChocHolic It has not been too bad for us, I have had to use a different brand of adhd meds when concerta supplies were low but have not had the experience of going to different pharmacies. I am sorry that you have had to do that, it really is the last thing we need!

@Okisenough
DDs psychiatrist insists she is on either xaggitin or concerta and nothing else.
I have really found it hard and wished we had never started to be honest.
I have read stories of kids doing exams not having meds and I feel so sorry for them.
Dd forgot to take hers one day and said she could really tell the difference

Thank you @DarkChocHolic @okisenough

I thought it maybe the first port of call but not really sure if it's the right medication for her as she doesn't have panic attacks as such.
Anyway I'm not a doctor.

I hope your DDs meds settle down @DarkChocHolic it must be really stressful if you can't get hold of them. Sounds very tough I hope once exams are over everything improves.

Good luck to everyone going back to school tomorrow especially those sitting exams.
Such a stressful time and so much worse if you struggle with anxiety depression and neuro diversity.

Our LAs solicitor responded to our JR pre action letter, 20 days after it was sent, to say it had only just been forwarded to them and they would reply as soon as possible.
They are meant to respond in 14 days, never sure if it's deliberate incompetence.
However plus side is DDs package is now fully funded for first time ever!
And I've been told that Annual review will now be in April 2025.
But this is through caseworker and we need an official response- I don't trust them.
We are also arguing transport as our LA has said it will only provide transport to tuition not for therapies, enrichment etc and they also have a policy not to fund post 16 transport as there is no legal right to this but if we don't have transport she can't access her EOTAS package, which LA are responsible for implementing.

SPIN- we have been given the budget for a EOTAS programme coordinator. Do you have any recommendations for organisations that provide this service, or any advice?
Atm it just feels like something else I need to sort out.

Had this week off work but typically have gone down with covid- feels like a waste of my precious annual leave!

Hope you all have a relaxing Sunday.

@Runnerduck34 My 19yo DD is on propranolol and has been gor 4 years. Started with 3x40mg per day, and now is only on 1 at bedtime, plus before exams. Also on fluoxetine, that has reduced now too. Hoping to reduce something further this summer.

@Okisenough DSA has a backlog, so you might want to look into that soon if DD is starting this year.

@DarkChocHolic some take a small top up after school.

@Runnerduck34 what kind of co-ordinator are you looking for? What do you want/need them to do (sounds a daft question but what people want/need/expect varies e.g. Kite can sometimes offer support coordinating with the LA but some need more in-depth package co-ordination than they provide. Although, like many companies, I don’t think they have capacity for new clients for package oversight at the moment. Similar to Sammie Allen at Learn with SAT). Do you want/need an EP to do the role or a specialist teacher or ex-SENCO? Do you need a payroll company?

If you carry on having transport problems, contact SENTAS.

DS1 tried propranolol as a daily medication it addition to an antidepressant. He had to stop it quickly because it dropped his blood pressure too much.

@DarkChocHolic I spoke too soon. Tried to get a refill this last week and the shortages have returned, went or called every pharmacy in the area and absolutely nothing. One pharmacist advised me to go back to GP to talk about alternatives ie short-release as from what he's heard, the shortages will last for at least a few more months. Sigh.

@Okisenough
Sorry you are facing the same issue!
I went on a trek yesterday as well and no luck in a 20 mile radius of ours.
I am so fed up and DD took her 4th overdose this week. Of sertraline and xaggitin. So we are even more short of drugs :-(

@DarkChocHolic I am so sorry to hear this, I'm sending you a handhold. It must be so upsetting and overwhelming. How is your dd? I hope you have some support for yourself during this time. Feel free to share on here, we all understand and will listen.

@Okisenough
Thank you. She is home and is wasn't as bad this time, and she didn't need the antidote.
I had no clue that she was Suicidal. I thought she was stressed with y12 mocks. She says it wasn't the reason..she is very unhappy with her body and feels no one likes her including her family!
I will be honest and say that at the moment with her moods we are finding it very hard to be patient and loving with her all the time.
I guess this comes across as uncaring and unloving.

I am exhausted. Husband and I aren't coping and I am quite close to asking him to leave.
Worried about younger ds as I am ignoring him completely.
Just wishing the days, weeks and months away to be honest. Am grateful for every day that finishes.

Xx

@DarkChocHolic no it doesn't sound like that. You can only do what you can. You are exhausted and your emotional resources are low. It is relentless and when things are hard, they are hard. It's not your DD's fault but this doesn't make things any easier for any of you. Does CAHMs offer any family support or counselling you can access? Please take care of yourself.

@Okisenough
We were with Tier 4 services Intensive Home Treatment team since December.
DD had DBT with them and we also got family therapy.
They handed us back to camhs in April and camhs now claim DD has enough support and they cannot give more psychological input.
I don't know what else would help DD to be honest. Her triggers are body image, friendships and school. I can control school to an extent but I cannot help with body image or friendships. These take time and maturity. She also has an add and autism diagnosis now so things are certainly hard for her. Bless her. Being in Y12 and the stresses it adds doesn't help either.
I have dropped days at work to try and get some respite (or to sit and worry more!!)
This too shall pass...one day!
I must have hope.
Xx

This too shall pass....words that have helped us all get through difficult days.

It saddens me that our MH services especially for ND people are not up to scratch. They bang on about awareness all over social media but there are not the services to back this up. I gave up on CAHMs, I appreciate they are underfunded and understaffed but still their dismissive attitude cannot be helpful and probably result in even more despair for many families.

We have just switched to a therapist who is ND themselves and specialises in dealing with ND clients. I will let you know how that goes.

@DarkChocHolic so so sorry to hear your DD took an overdose. I hope things are more stable soon.
Caring for a young person with poor MH puts a huge strain on any relationship, my DH literally went running- finds it hard to cope when things have been really bad and I guess exercise is his release was very resentful because I dont get to ,run away- someone has to be here. It also imapcts siblings too, its very very hard, all you can do is take one moment at a time , do the best you can and be kind to yourself. Okisenough is right-better days will come.
@Okisenough you are also right about CAMHS, its ironic with all the improved awareness of mental health there is no support available.
I hope the new counsellor works out.
And I hope both of you track down those ADHD meds, as if you dont have enough to do..

Im feeling very frustrated with LA atm- whats new! They called an Annual Review before tribunal amended EHCP was even issued, then they changed their minds and told us next AR review would be April 2025 so cancelled the planned AR meeting date, but then less than 2 weeks later theyve just told me theyve commissioned at EP to do an assessment and AR is now due this July!!! So fed up just want to be left in peace! No doubt they will be seeking to remove provision only just awarded, like they did last time ... so here we go yet again...... so frustrating that no sooner is provision awarded by tribunal they seek to remove provision....and tribunal takes a year.
I am going through an LGO compliant at the moment, part of my complaint was LAs not adhering to the AR process as set out in SEN code of practice but LGO say they cant look at the AR process as part of my complaint as its linked too closely to the right of appeal to tribunal!! I know they cant look into period during tribunal process but I thought they could look at the process of AR preceding tribunal-but apparently not- there is no accountability or consequences for LA