Parents of anxious kids/teens support thread(part three)

[Stilllivinginazoo]

Filling up a second thread,here's a new one to keep that support running!

This thread is a supportive,non judgemental space for those who have anxious children,or care for children with anxiety

You can pop in and just offload,or stick with us and share ideas etc

Caring for an anxious child can feel like it dominates your existence and drains every last drop of energy you have,and the sadness of watching your child's distress can be overwhelming.only those who have lived it truly understand that

We also love to hear successes.it can be hard in real life sharing something you are proud of your child achieving if others do it as standard.we get that and it's good to have somewhere where people are pleased for those little wins

You are no longer alone

CAMHS are primarily a medical service. They sometimes signpost to other services, but don't rely on them for advice on benefits, social care, education, charities etc. because that's not their primary remit. Most HCPs (not just MH HCPs) aren't experts on e.g. EHCPs and shouldn't be expected to be.

As I said, you should ask CAMHS to clarify. It's possible she meant that although DS has a low mood he doesn't meet the diagnostic criteria for clinical depression. The word depression is commonly used to mean low mood, but clinical depression is more than that. Or maybe she meant he has something like mixed anxiety depressive disorder rather than clinical depression/major depressive disorder.

day is he returning to his secondary school for sixth form or going to a new venue?
I ask as dd2 will be returning so to speak and we have an excellent rapport with head learning and they are ready and listening to work with whatever dd2 feels she can handle to try and make things easier.i need to write email today,but we are hoping for transition period of minimum time initially,just remote access to work and building up start coming in to see teachers and working towards amount time in lessons few times week/daily.its the only part our journey that's not been total nightmare.school for her have been very very helpful!

Had taf yesterday on zoom.dd2 anxiety counsellor sent apologies,after requesting moving from Thurs to Monday

Hi. Just spotted this thread. My DD is 14, has had social anxiety and Selective Mutism plus very restricted diet nearly all her life and now depression and extreme calorie counting. CAMHS support will start properly in mid August with cbt type support from a psychologist ad hopefully also eating disorder support. She will be on day 5 of Fluoxetine today. I really hope it will work. Feeling the enormity of it all this morning.

Day school have tried their best, their pastoral support is somewhat lacking. We have been in contact with somebody nice but ds is way beyond the school” do mindful activities and keep exercising “level of support iykwim. He needs proper professional therapy and maybe medication.

Ds now thinks nobody can help him. The longer this goes on the more entrenched it gets. I’ve emailed a few points I feel we need to discuss with the lady now dealing with him. Speaking this week. The main one being making him wait is going to cost more money in the long run. We could be getting him well for September during the holidays, then he’d drag himself into school and be out of the house with other people instead of a darkened room all day every day spiralling yet more. He could draw on the therapy and medication, be with people and hopefully it would all snowball a recovery. It feels this nurturing is just to keep him safe and zombie like so he doesn’t bother anybody until they fund him. He was “accidentally”case closed, paperwork has disappeared and I’m bloody angry both have potentially cost him earlier treatment and thus his A level courses.

Don’t know whether to beg, borrow or steal for private but anxious to keep with CAMHs due to the multi disciplinary aspect, their knowledge and the fact the lady who spoke to him last week is the longest conversation he’s had with anybody for quite some time.

It’s a bloody nightmare. I’m so stressed and trying not to let that turn into anger against ds who isn’t attempting to help himself. Failing. Will try the BACE thing. Weirdly it’s helpful to see somebody with similar dp issues to me. We had a very frank discussion at the weekend after my meltdown. I feel your pain.

Dave it must feel scary but it sounds like a comprehensive plan of action. I hope you start to see a shift.

davespecifico welcome
How's the meds going?
It's certainly normal to have days of feeling overwhelmed by it all.i do and I'm pretty sure others can testify to this also

Welcome Dave. SM is difficult, DS1&3 have it. Feel free to ignore, but with social anxiety, SM, an eating disorder and depression in a teen girl have you considered an ASD assessment? I hope the fluoxetine helps soon. Zoo's right, how you're feeling is completely normal.

I'm not surprised you're annoyed with the counsellor, Zoo. DD2's school are very supportive. Hopefully the GP is more likely to refer since it's come from the TAF. I wouldn't bother with mediation, get the certificate and go to tribunal. LAs use it as a delaying tactic and if they are going to concede they will with or without mediation. If you need help, SOSSEN and ISPSEA are good with tribunals as is the SN board.

Salad school are able to support more than that. Push them to help.

I'm going to share my good news because I know you will understand. DS1 has got an appointment at a sleep clinic! The referral had initially been refused by several. In desperation I emailed the clinical lead of one pleading explaining everything, asking if they would either reconsider, consult privately or recommend someone who would. I had a reply saying they would discuss with DS' psychiatrist, our CCG and their service provider before getting back to me.

1hop I’m pleased things moving forward for DS1 regarding sleep. Zoo I’m sorry you’re DC are struggling, it must be so difficult. My DD continues to make progress just now and we’re only 3 weeks into fluoxetine. I know it’s not a long term solution but it’s helping her push herself into situations she’s anxious about then realising that nothing scary happens. She is still very anxious but much calmer and is definitely moving forward. Sorry to hear of so many children/teens struggling just now.

Roxie I'm willing to accept long-term meds if it gives her a life back.we don't question insulin for diabetics,and it's still about hormones/chemicals that are lacking in use ADs
1hop that's AMAZING news.so pleased for you!!I hope this gives you back some decent rest and can better rested to face the days challenges

We are using the mediation as a delay tactic in order to get his ASD statement and see if that becomes his priority issue in which case there are 2very local excellent schools,which only take kids with statement.fingers X

I rang doc.hes more than happy to send letter adding weight for dd2 to see camhs medic.hes also refer lil zoo for asd initial assessment

Feeling quite deflated today.dd2 finds comfort/grounding walking barefoot over local nature reserve I'm evenings,but that's zapping me of 90 minutes walking time as it's a deserted spot we go to she couldn't go alone even if she could manage being out by herself.tonight it's failed to work and so I'm very tired and she's stressed and panicky

I've also email school asking for concessions about collection of exam results and for possible ways to modify her transition back into education in sept

Roxie sometimes medication is needed to enable DC to be able to engage with the therapy that will make a long term change.

Zoo DS' ADOS was a while ago now, wasn't it? Could you chase them up? Once the ASD diagnosis is confirmed the EHCP's primary need should change, so I can see why you're trying to delay. Even if it remains SEMH lots of ASD schools will admit with a diagnosis. Well done for finding a SS that can meet DS' academic needs and his MH needs. No easy feat!

I'm glad the GP was supportive, hopefully the school are similarly helpful. Sorry to hear DD2 is having a difficult night and you are so tired, I hope she settles soon. Have any of you got a Fitbit? That would show DS' sleep pattern.

I have my fingers crossed for the sleep clinic, otherwise DS1 will still be sleeping in our bed and needing someone with him to fall asleep as a teen given progress to date.

How old Is ds1 1hop
Sen support services spoke to asd team.we should hear within 2months,that was nearly 4 weeks ago,so anytime now really

He's 10, 11 in a couple of months.

Thats a lot of nights where you haven't got much sleep.i really hope they can help.x

Having exhausted all our ideas, and those of others, I really hope they can help. DS1 hasn't slept through the night since DD1 died over 5 years ago, and he wasn't a brilliant sleeper beforehand. We are lucky that we get some respite (although he hasn't been since the beginning of March) but it still takes its toll.

Day I too feel guilty DS1 misses out on things. I remind myself DS doesn't perceive it as him missing out. He is happier not going to the cinema/museum/shop or into the garden etc. It is also helpful to frame it as can't do something rather than won't. It really is can't - no one would chose to live life with an enduring MH condition.

In my opinion contacting sixth form was the correct thing to do. They are likely to be more accommodating if they have time to plan, rather than the need for adjustments being sprung on them in September. DS is likely to need to know what the plan is beforehand too.

Having plans in place but not needing them or needing to tweak them is better than scrambling around trying to put something in place last minute. At least that way the school are aware. I would still apply for an EHCP too. Better to apply now and DS improve than not apply but need one.

Its not so much that DS1 needs tiring out, he also has a medical condition which makes everyday living harder work than normal, it's DS finds going to bed anxiety provoking. DS has attachment problems relating to the death of DD1 - he thinks everyone is going to leave him, and separation anxiety. His PTSD flashbacks are worse at night as well. Which is why it isn't safe to just leave him to self settle. His self injurious behaviour goes through the roof if we try.

We have tried various lighting, dream pad pillow, ear plugs, a 2 way monitor, brushing, worry book, tents, doodle book/pillowcase, music, white noise, various apps, weighted blanket, audiobooks, teddy, relaxation. Going against all sleep hygiene advice as a last resort I tried letting him watch the Lego Movie in bed, but it didn't work. Medication - melatonin, and he takes Mirtazapine at night which makes him drowsy. We tried Clonazepam but it didn't help and he had side effects so we stopped it.

DS has poor insight and can't put the ideas we discuss into practice so talking during the day about nighttime doesn't help. He can't 'do' visualisation either. An adapted version of gradual retreat - we had to stop, it's not safe to ignore him, nor leave him to self settle. Oh and we have a bedtime routine that is the same every night.

I also considered bribery but decided if he 'failed' it would cause more harm than good - I'm not adverse to it in other situations, but don't think its appropriate here when I am not certain he can succeed.

I'm exhausted just listing everything we've tried.

That's a very comprehensive list 1hop
I've nothing I could add,and it definitely needs proffesional insight.i feel for you all

Day our school has actively asked what they can do to help so they aren't scrabbling at last minute try help dd2 transition into 6th form.its not set in stone,and of course if meds help her and she slides in without plan b that would be amazing,but it's a good idea to have a back up as she is calmer knowing what may be coming.she doesn't do ad hoc or surprises...

Day, Zoo posted what I was trying to say about sixth form.

Zoo I'm sure there's probably other things we've tried as well. I'm glad it's DH's turn to do bedtime tonight. DS1&3 hate anything impromptu too. Everything is planned in great detail. We have the weeks plans on a whiteboard in the kitchen so they can see who is doing what and when. Although NT this helps DS2 too.

Day nights are harder. They are dark, quieter, lonelier and often appear never ending. You are tired too which reduces everyone's ability to cope. Too much time to think.