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

Tiktok as difficult as that is to hear it is positive CAMHS are recognising DD’s needs.

Runner trust your judgement. Whatever plans you had made, appeal or not, SS or MS, DD would be feeling the way she does right now. The thought of change and new people is overwhelming. DD has been out of education and right now everything feels daunting. As you say this doesn’t have to be a permanent placement. Do none of the pupils go outside at break? Or just not the ones she was with? It might be worth talking to the school about that to find out what happens day to day. Remember DD is taking it out on you because she feels safe with you and you are the one that is present who will love her unconditionally.

Just spoke with camhs and as discussed mood has lifted they are happy to discharge today. They are arranging an urgent psychiatrist appointment to review meds.

tiktok I'm do pleased they realise the impt of urgent care not fobbing you off with more waiting lists
Runner D's has reached point hating his placement,which I never thought I'd EVER hear him say I hate school.he had a full on meltdown on monday afternoon pacing,muttering,crying etc
He hates it there but can't fully verbalise the whys
He was up most of the night,so I didn't send him in tuesday.he was in OCD overdrive with his obsessive behaviours,couldn't concentrate and questions asked had to be asked again 6-8 X before he actually listened and understood responses.he was tearful,angry and not the D's I know at all.proper scared me he was having a breakdown
He didn't sleep again Tuesday night much and was not improved Wednesday morning and so fretful I made the decision to not send him in last couple days if term and start gently trying to unpick what on earth has happened
Head unit is adamant he had an amazing day on Monday and us doing great.what they say to what he does isn't even in same universe let alone page

tiktokcat how is DD now? Are you looking after yourself?

Zoo did DS make it into school today? If the school you want for next year offers a place and has a space now you could call an early review and ask for the EHCP to be amended.

DS1 has had a terrible afternoon and early evening triggered by next doors house alarm going off. They think they have a fault with it as it wouldn’t turn off to begin with.

Thank you zoo and leap. Urgent appointment is 2 weeks away :/
I am ok. Very tired, but seeing a friend today so looking forward to that.

Zoo - I would let him rest for a bit.
Leap - even I hate the burglar alarm noise.

Thanks Leap and zoo, I'm hoping school outreach will work out, it is the best and only option right now.
I know she's scared and kicking back at me, but I just double guess all the time- I'm trying to take it one day at a time.

Tiktokcat, hope you had a good day yesterday.
2 week wait for urgent appointment isn't great.
I hope immediate crisis has subsided. Take care of yourself .

Hope everyone has a relaxing weekend.

leap I got a message saying I'd put email in wrong and it had pinged back(my phone only notified me of this on wednesday☹️)I emailed asking any placements for post 16.nothjng.i need to put in my choice by Monday so think I shall have to say hoping for x(waiting to find out if they can place him) as have struggled to find appropriate placement
I didn't send him in again this week.school are adamant he's doing amazing,clearly he's not and they see nothing wrong.fruday school was closed anyway with staff shortages.he had email from his keyworker offering ideas for placement.2huge local colleges and a Sen support unit that will never take him as for non academic kids.if he wasn't in year 11 desperate to get at least one GCSE I'd be pulling him out of there.tjey don't seem to understand him at all and he hates it

This week dd2 has returned to sit year 13 friends(she's resitting year 12) at lunch and playing uno.shes v tired after school but the mixing seems to be doing her some good as moods a bit better when gets in,then fives as she comes down and feels exhausted
She's out today meeting someone for a walk and expected be gone an hour or so.shes been out 4HOURS❤️
Runner

Tiktok an appointment 2 weeks away isn’t acceptable when DD was discharged on the basis of an urgent appointment with a psychiatrist.

Zoo it is good you have the email. It has shown you the LA’s hand. They intend to name a MS college. Can you call the school? If that school is within travelling distance I will PM another which may be just about within travelling distance. Good reputation, can meet academic needs, ASD primary need rather than SEMH and a s.41 school so don’t need an offer of a place. If within travelling distance have you looked at the 4th on the list I PM’ed. Well regarded, again an ASD school rather than SEMH. Offers level 3 qualifications for when DS is ready. Or the 2nd school on the list. I think it was the first SS you visited and liked. No separate post 16 programme but their post 16 pupils do KS4 courses which would suit DS for now and it’s a s.41 school.

Would you consider weekly boarding as that opens up some brilliant schools/colleges?

Don’t deregister, if DS can’t attend ask for an early review, the LA should also be providing alternative provision and any provision specified and quantified in F.

Hugs runner

Good luck zoo

Leap, that's what I think. I am talking to our solicitor tomorrow about our case so will ask for advice.

Hi everyone,
Thank you for your welcome replies.Only posted once before. Know its not about me but been having panic attacks myself because of situation but have managed to control them by telling myself my ds isn't at risk of suicide as says he wouldn't do anything because of me and dad. Still hasn't told him and doesn't want me to. GP prescribed promethazine to help with sleep and said he has complex pstd which neither of us can understand as nothing traumatic has happened but GP said that he wouldn't know what it was but would've occurred when very young. Also suggested relaxation and yoga. Said would prescribe anti depressant if he wanted it. A couple of days after taking first medication, he felt very groggy and said he didn't need it for sleep. Now on sertraline and has stopped the promethazine. Tried the relaxation technique for a week and gave up even though I said it would take a while for it to start to work. Goes to sleep very late, 1.30am.He told me that has trouble sleeping but told the GP different. GP thought a couple of good nights sleep would do him good. Keeps saying he's just waiting to die and there's nothing to look forward to. He won't do anything I suggest, like come out for a walk in nearby woods and I feel at a loss as to what to do as everything is very negative. GP appt is in a weeks time. DH keeps asking if ds is OK and I can't say anything. None of it adds up. He went to bed at 7.30pm tonight. Won't have an evening meal but gets himself something small, thats been the last couple of nights. Seems to snack a lot during the day. So, hardly any exercise, not sleeping properly, eating erratically so no wonder he feels tired all the time but won't listen when I try to explain this. Sorry to go on, feel like screaming for some reason. Anyone who's dc have been on sertraline, can you tell me how long it took to work and if it helped at all?Thanks.

circle DD tried it,but it didn't work for her.others on here made progress on it.ADs usually take 6+ weeks to see improvement,sometime dose adjustment needs to happen as you go too

Stilllivinfinazoo.Thanks for that. Theres obviously not many people on his thread tonight.He has anxiety but won't talk to anyone else other than me and the GP who doesn't think counselling will help.

Tiktokcat if DD is admitted again refuse to take her home until she has been assessed by a psychiatrist.

Circle have you thought about some counselling for yourself? How old is DS? Has the GP referred him on? They aren’t qualified to diagnose cPTSD. Why do they think that, and why to do think the trauma occurred when very young? Rather than counselling EMDR or Trauma focused CBT are the gold standard treatments. If DS is under 18 antidepressants should not be used on their own, it should always be alongside therapy. Would DS listen to someone professional telling him about sleeping/eating/exercise? What time is DS getting up in the morning? It won’t help his sleep or mood if he is going to sleep late/getting up late.

As Zoo posted, Sertraline can take a few weeks to start working properly, things can get worse before they improve and DS may need an increase in dose. DS1 is now on Mirtazipine but has previously taken sertraline. If DS wants something to help with his sleep that doesn’t have the same hangover effect would he take melatonin if the you can get it prescribed?

Will DS take a multivitamin and VitD?

1leap-I don't need counselling thanks.

There hasnt been any trauma. I didn't realise he shouldn't be using ad's without therapy. Is there anything written on this anywhere or is this your speciality and thats why you know for sure? As I said, he won't talk to anyone so won't listen either. I tried explaining in a phone call to the GP when he initially rang that I was a bit concerned about his diet esp as he's a bit underweight but GP didn't take this on board, didn't weigh him/take blood pressure etc which I thought he might? Ds won't take anything for sleep now (that was what the promethazine was for as is a drowsy antihistamine) so it's difficult when it's all so conflicting!

It is in the NICE guidelines here. Children and young people should only be prescribed antidepressants following assessment by a child and adolescent psychiatrist and then only in conjunction with therapy. Fluoxetine should be the first line treatment, since the GP hasn’t followed that I would want to know their rationale. It is highly unusual for GPs to prescribe children and young people antidepressants without them being initiated by CAMHS. Has the GP started antidepressants without seeing DS and doing basic obs/bloods, in part to rule out a physical cause?

Did the GP explain why they think DS has cPTSD?

Promethazine is off license for sleep in children and young people other than when associated with urticaria and pruritus, again it is unusual for GPs to initiate this treatment. Melatonin isn’t the same with regard to grogginess and drowsiness as it is a natural hormone so doesn’t typically have the same effect - this is also often not initiated by GPs but since your GP has prescribed 2 other drugs like this they may prescribe this if DS would try it.

How underweight is DS?

I suggested counselling to help you cope and with the panic attacks. Many parents with DC with MH difficulties find it helpful.


Have you applied for an EHCNA?

DS1 has PTSD relating to a bereavement and is under a specialist tier 4 trauma CAMHS team.

1leap. Thanks for all of that. I'm quite concerned now. I'm not going to go into why GP has said this as its outing in that it can identify the GP and then lead onto us if that makes sense. I don't think the GP is correct. He's just out the symptoms together and come up with it. There hasn't been any trauma. He says its just the way my ds has interrupted something as a child?! When I looked on CAMHS it said that the first medication they give is Sertraline so I was happy that was what he prescribed first. I also thought that Melatonin wasn't always the best thing to take.
I think I need to get in touch with a child psychiatrist for a second opinion now or will CAMHS speak to me in the phone? My son said that he's heard at school that CAMHS isn't any good and so he wouldn't go there. Like everywhere else in the country, there's a v.long waiting list for it here anyway.
Thanks for the advice re panic attacks but I had them years ago and know how to manage them.

No EHCNA needs BTW.

Circle CAMHS are highly unlikely to discuss DS’s care and medication with you if DS isn’t under them. You will need a referral. Experiences with CAMHS vary, some receive better care than others. DS1 now receives excellent care from them.

Medication should not be routinely prescribed for children and young people with PTSD. Best practice is the only time Sertraline can be used as 1st line choice in children and young people is for OCD. For children and young people Sertraline is actually only licensed for OCD, although it is sometimes used by psychiatrists off label. Why do you think melatonin isn’t always the best thing to take? It is a naturally occurring hormone, some people, especially ND people, just don’t produce enough of the hormone. Melatonin wouldn’t be any less safe than sertraline and promethazine, in fact many would consider it safer.

There is a theory that for complex reasons a very small minority of DC perceive everyday life events as traumatic. There is a poster on MNSN (she isn’t as active now but is still around) whose DD with ASD and significant complex MH difficulties fell under this umbrella.

Your DS has SEMH needs which are a type of SEN, he would benefit from an EHCNA, which could include psychiatrist &/or clinical psychologist assessments. You can apply for an EHCNA yourself, IPSEA have a model letter.

Spoke to our lawyer tonight. It sounds like since dd hospital admission the LA are now planning to work on doing what they can to secure her placement and extra support. I imagine they don't want any negative pr.
She thinks we need to consider if this placement is best for her, but I don't think dd could cope with any change right now. What she needs is therapy, some decent meds, and consistent support. Easier said than done. Feeling a bit more hopeful of the process but sad we have had to get to where we have to get here.

1leap. My ds doesn't want to go to CAHMS and he hasn't had any trauma as I've already said.

Tiktok does the EHCP contain the therapies DD needs?

Circle I didn’t post DS had to go to CAMHS. What I posted, in response to your question, was they aren’t going to discuss DS with you if he isn’t under their care, he would need referring for that. Neither did I post DS has experienced trauma, how could I possibly know that? I posted medication shouldn’t routinely be used for PTSD because I wanted you to know even if the GP thinks DS has cPTSD it isn’t usual to be prescribed medication. I also explained there is the belief there is a small minority of the population interpret everyday events (so you and DS may not see the triggers as trauma) as traumatic because people often don’t realise that.

@Stilllivinginazoo - impressed with DD2's long walk yesterday, hope it didn't exhaust her too much.

I meant to post last weekend about Movicol/Laxido. DD1 (19) has been on a maintenance dose since she was 10/11 and hasn't had any loss of control/unpredictability issues. She didn't need to do a disimpaction regime at the beginning but I do recall it took a couple of weeks to find the right dose for maintenance and at first things became more frequent and looser than required so school holidays would be an ideal time to start from that point of view. DD1 has a sluggish bowel (due to her DCD diagnosis according to paediatric consultant) which pre-Movicol meant infrequent plumbing-destroying toilet visits! She generally uses 1 sachet every other day and it keeps things manageable and regular.

@Runnerduck34 congratulations on getting the placement you want named by the LA! As others have said I'm sure DD is taking her anxiety about such a huge change out on you but don't doubt yourself, you've got her best intentions at heart and this way she will get the support she needs. DC can't always make the best decisions and need parents to take control but it's hard when they take it out on you.

@CircleOfExhaustion DD2 (17) is on Sertraline (under CAMHS psychiatrist). She started on Fluoxetine in December 2020 for anxiety and low mood which seemed to help a little but then plateaued however contrary to the Nice guidelines she wasn't having therapy at the same time (CAMHS were fast with the psychiatric care and medication in her case but slow with allocating a care coordinator and therapy). Psychiatrist suggested switching to Sertraline last July as suggested it might be more helpful for DD's anxiety. As Zoo said regular medication reviews take place and medication is adjusted slowly if needed. DD's Sertraline is still being titrated to the most effective dose for her and her psychiatrist says there are other medications we can try if needed. I think Sertraline is helping DD as overall. She is managing to do more but it's likely a combination of medication along with other regular input from professionals. I expected AD's to make DD better evenly but in practice she seems to have more positive days in the scheme of things than previously (and some really bad ones still) - I don't know if this is typical. Other peoples experiences may be very different. It must be very difficult for you not to be able to share the load with your DH.

Sorry - that paragraph wasn't meant to be in bold!

Forgive me @MuddlingThroughWithoutAClue What is DCD??
Lol zoo is ment to be doing input output chart
She was saying yep.x amount pee at X o'clock
I was cleaning bathroom today and jug was bone dry.i challenged her and she swore black was white had pee in jug.i said I need to see next time please.lots sulking
Refused fluids til 5pm after finally going at 3pmthis will be a battle of wills I am not going to be able to win☹️

Zoo DCD is developmental co-ordination disorder, what used to be called dyspraxia. Your post made me laugh. Sorry, I know it’s not funny. At a population level self reported results from teens must be highly inaccurate. In the days before continuous glucose monitoring a friend’s DS was caught out making up his readings when his diary had results for the day after!

Muddling interesting DD1 has DCD, that makes DD2 more likely to have ASD. DS’s take (different) maintenance doses of Movicol due to a long term medical condition. DS1 has better days and poorer days, too. That’s to be expected. If you think about it even off medication there are good and bad days, so even if medication improves both some are still going to be better than others.