Parents and carers of anxious kids/teens(part5)

[Stilllivinginazoo]

Hi guys
Just spotted we have filled another thread!
I started part 1 during the journey with my sons escalating anxiety
This thread is a non judgemental place to support each other
As parents and carers we recognise how hard,stressful,and often lonely,this unseen battle can be.others dismissing small wins as the norm for most etc
Please feel free to offload here,share your small wins,take the support and comfort this thread brings

@1leapforward2back thank you so much, I am still waiting for them to call, he has calmed down a bit for now. I will go to A&E if necessary- but I don't know how easy it will be to get him in the car.
If it gets to the point where I think he is going to self harm (he is talking about hanging himself) then I will call for an ambulance.

Crisis team finally phoned back. Absolutely useless. Said to hide all knives, medication, ropes etc and that it's just anxiety and intrusive thoughts and he needs to try distraction and sitting with the thoughts. I explained that he/we have been doing that but that it isn't helping.
She asked me what I wanted from the call and I said to get some help in keeping DS safe.
He was distraught that they wouldn't give him any help.
I've had to take his dressing gown belt away from him because he wrapped it around his neck.
I've managed to calm him down and he has agreed that if it gets too bad we will go to A&E.

So sorry MumofoneASD Hope your son gets all the support he needs.

Thank you @sandwiches77, I am taking it one minute/hour at a time

Sorry to hear this mumofoneasd

I am exactly where you are except we are in a&e

@TikTokCat I'm so sorry to hear you are in a similar situation - it's just so awful.
I hope your DC is getting the help and support they need in A&E

If you don't mind me asking, did you simply go to A&E and say DC is suicidal? Do they make you sit in the open waiting area? No need to answer those questions if you don't want to.

Last week the crisis line told me to come here if it got really bad. So I did. She was admitted for 2 days due to level of risk.
Tonight she has done something so will be admitted again.

Thinking of you @tiktokcat.
I hope you get some help tonight.
@MumofOne I was in your position in September with my 15 year old son. He also planned to hang himself, but his plan was thwarted after friends informed the local police and they came round. Several months later he is in a much better position after an ADHD diagnosis & treatment for depression & anxiety.
Go over your sons room & online deliveries for anything harmful. Lock doors at night & remove the keys. Check whether he's been self harming with anything sharp. Lock away medications & paracetamol. You are the person best able to keep your son safe.

Tiktokcat I hope DD has had a settled night, and this time you aren’t discharged you DD has had an assessment with a psychiatrist and a plan has been put in place.

MumofoneASD if DS is still the same as yesterday I would take him to A&E. When we have taken DS1 we didn’t wait in the main waiting area, but I don’t know if that is because of his medical needs.

@TikTokCat I hope your DD is being well looked after and that you are getting some rest?

Thank you @Fferny1 - I'm so glad to hear your DS's plans were thwarted. I am sleeping in the same bed as DS (his request) and he could not be quiet if he tried so night times are not too much of a worry. Everything is locked away and I'm just constantly with him. Not sure what I'll do next week when I have to go back to work though.

CAHMS seem to be intent on getting him an ADHD diagnosis rather than letting their psychiatrist see him, it's so frustrating because he has literally just been assessed for ADHD and not given the diagnosis. His psychologist is non diagnostic but she is talking about OCD in respect of his intrusive thoughts. It feels as though he is being passed from pillar to post and back again.

He also started talking yesterday about not deserving to eat or live. Add to all of that my DH just doesn't get it and seems to think that getting cross with DS will help. FGS!!

Thank you @1leapforward2back - he seems a bit calmer this morning but I definitely will head straight to A&E if things get bad again.

Dd was discharged on Friday after a thorough mental health assessment by a lovely mhp.
Her moods are up and down.
Today I have had calls from early help - they signposted me to lots of organisations I have already used and are not sure dd fits their criteria as it is all MH. And camhs - who made we wake her up so they could talk to her and assess her risk. She says 8/10 but she won't do anything. They have flagged as medium.
We have psychiatrist appointment tomorrow so hoping for some sort of progress.

MumofoneASD how is DS?

Tiktokcat I hope the psychiatrist appointment goes well. With 2 admissions so close together on top of her existing needs I am surprised DD has deemed to be medium risk if she is rating 8/10. Early Help can cover MH conditions, besides it is likely DD’s MH difficulties stem, at least in part, from her ASD. Did DD not have a social care assessment as part of the EHCNA? As part of your appeal to SENDIST have you asked them to look at social care?

1leap - early help sent an email with some organisation and confirmed they were discharging. They were very clear on the phone they were not mental health trained so could not help with that side of things.

Tiktokcat EH have many DC with MH difficulties on their caseload, they may not be HCPs but you aren’t asking them to be. If they feel DD is beyond the level of EH they should refer for a social care assessment by the disabled children’s team, which should have already happened as part of the EHCNA anyway. I think there are others on the thread who are/have had EH input.

We had psych appointment today. Dd adamant she won't go back on previous ads or melatonin. Psych doesn't want to prescribe new meds yet as she is about to embark on emdr.
They made me feel like shit about the fact dd got her hands on the meds last week as I had been told to take them away. This was in progress as I had taken sharps, paracetamol and nurofen, but not the melatonin and sertraline. So, my dad has been feeling pretty glum :(

Just catching up on this thread
@TikTokCat and @MumofoneASD -Im so sorry things have been so very difficult, please dont let anyone make you feel like shit or that you are failing , Its clear you are doing everything humanly possible. I think mum guilt is huge, I definitely suffer from it but we can't fix everything, we can do our best and from experience I think the professionals dont fully understand or grasp what its like living with DC with MH 24/7. I think you are both amazing and sending you both a virtual hug and hoping for better times
Here DD had a good half term, we went away for a couple of days and despite stress of car break down-coped well and joined in with holiday activities. Now we are back home Im desperate for her not to just retreat to her room but its hard when everyone else is working or at school. Her new medication seems to be helping but her TICs, which only really manifested in the past year or so seem to be getting more pronounced and on holiday she seemed to take up "chanting" when she was excited, I think partly because she enjoys it-maybe its a release. Its very hard to comes to terms and accept the situation we are now in compared to a couple of years ago.
Other than that we are still ploughing on with the tribunal for changes to the EHCP (placement is now agreed but wont start until Easter due to outreach staffing). The working document we returned to the LA 6 weeks ago seems to have got lost in a black hole and hasnt been returned to us.

Sorry I fell off thread
MN ate 2 posts
Will try again tom
Sorry some of you are struggling so much

Tiktokcat ignore anyone making you feel guilty, they have no right to do so. I agree with Runner, parenting a child with MH difficulties is different to caring for a child with MH difficulties in a professional capacity. Not all professionals realise that. It is exhausting and unrelenting. I would be interested to hear your experience of EMDR. DS1 still isn’t at a point where he could engage with it, one day I hope he can.

Runner I am glad you successfully managed a few days away. DS1 has a motor tic which is worse when his anxiety his high. Do you think DD’s anxiety around the holiday and school situation are manifesting in the tics? Could some of the tics be DD stimming (especially the chanting if you think DD enjoys it and does it when excited) rather than a tic?

runnerglad you had a few days away,and it went ok

Things here are hard

DS literally HATES school.if he had longer I'd be moving to get him out,but for a few months seems futile.every day is a battle.every day he gets more upset,confused and miserable.i accept doing emotional regulation and social skills is hard,but he says in class he just does it then feels different/feels upset once home and then gets very distressed.school maintain he's doing "amazing"
Dd2 has huge levels "startle" type tics(arms flail,head jerk etc) she continues to push herself to school but isn't sleeping and is becoming low
Lil zoo tummyaches are in full swing now we are back from half term

I am past tired

I instigated everyone in bed by 1030 last night.no idea how that went for them but I was out like a light.lately I've slept couple hours then been up all night.i actually woke once at 2,then straight back off again.i cannot remember last time I slept that much.literally years

Feeling very discombobulated today!!

How's everyone with news regarding Russia yesterday?
DS and dd2 very stressed over it all.i keep gently reminding we need cut off thoughts we cannot do anything about and no social media but instagram

Thank you runner and 1leap. I needed to hear that.

Runner - my dd used to sing in an operatic voice when she was happy. It was a stim. The chanting may be a regulatory activity.

1leap - the 1st emdr appointment was just a getting to know you. The lady was amazing. So kind and gentle. Dd was happy for me to leave the video cal while they talked and come back at the end (unheard of).
They start the process next session. They lady said it is brilliant for people with asd . But dd will need chocolate and tissues for next session. I think she has prepared her well and dd is keen to start the journey.

Since the appointment she actually got out of bed and made a snack for herself. I wonder if maybe their is a little bit of hope there.

Zoo - that beyond tired feeling is awful. I now leave dd at 10 and go to bed. Sometimes she can be awake until 4am but I have told her I can't do that and I can't help her if I have no sleep. She accepts this.

Leap and Tiktokcat I think you are both right , the chanting is stimming , sometimes you are too close to situation to see it.

Zoo I'm so sorry it is all so difficult now, so pleased you slept well last night, I think the 10.30 rule is a brilliant idea,you can't run on empty.
I know some parents deregister their DC from school in similar situations , it's something I used to struggle to understand as I've always believed education is so important and it is really important but sometimes there are other things that really do need to come first like MH and wellbeing.
I think DD being out of school since October had made a difference, I didn't deregister I got an psychologist letter to support it , like a sick note.
The relief of removing every day pressure of school attendance was enormous, but it took 2-3 months before we noticed a real change in her anxiety levels. Anyway I read your post and just thought why do we put ourselves through this,isn't there a better way??
No easy answers.

I have kept news off re Ukraine, hopefully DD isnt overly aware of it. It does sound very scary.

Tiktok EMDR sounds promising already. I have heard such good things about it. I hope it helps DD move forward.

Runner like you, I think mental health has to be the priority, if necessary education and qualifications can come later. One of my regrets is leaving DS1 in MS as long as we did. We are starting to think about how best to approach GCSEs for DS1 with EOTAS. Academically he is more than capable but I don’t think he is going to psychologically manage a full set in one go.

Zoo I am sorry things are so difficult at the moment. I hope the improved sleep and enforced bedtime helps even if DC are only in bed rather than asleep it does improve the routine and allows you to sleep more. Have you asked if there is space at the post 16 placement to move early? An early move wouldn’t necessarily be a bad thing. I wouldn’t deregister but if DS can’t attend the LA should provide alternative provision.

DS1 still sleeps in our bed and even when he struggles to fall &/or stay asleep we stick to the routine of a set bedtime, same with DS3 when he struggles to settle/sleep. With DS1’s MH and development he isn’t safe to be awake alone but we insist on staying in bed otherwise he would never settle to sleep or rest and it is exhausting enough as it is caring for him.


Re the Ukrainian situation, DS3 is dealing with it by reading a lot of reports and wanting to talk. Which is at odds with what’s best for DS1 - avoiding the news/discussion of it.




Follow up with psychiatrist today.
Anyone got experience of citilopram? Dd has opted to go on that. Cold turkey from sertraline isn't working too well. Anxiety increasing by the day.

Tiktokcat I was on citropram for a while when oldest DD had anorexia, as with all meds takes a month or so to kick in. I had awful mechanical style yawning that I couldn't control for a week or two it was very odd, that was my only side effect that settled fairly quickly after that it worked well I felt calm and serene!
Youngest DD has recently been weaned of setraline and gradually introduced to flurexotine ( not sure I'm spelling anything right!) . She was very gradually weaned off ( she was on high dose 175mg ) over 4-6 weeks a week of nothing then slowly introducing florexetine over about 3 weeks to dose she is on now. It took ages but very slow changeover meant it was a bit more manageable in terms of side effects , she was out of school and we expected nothing from her.
She is now doing really well and I'm so.pleased we want through the pain of changing meds.
I hope it works put well for your DD, good luck

Tiktokcat I hope the Citalopram works for DD. DS1 was on Citalopram for a very short time after he tried Fluoxetine and Sertraline. It was quickly stopped because of deranged bloods.

It has been a long day with DS1.