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

She's saying engagement is only to please me1hop and I've been told as he's still under psychiatrist at camhs his file isn't closed,and should we need anything we can call the consultation line,and if he doesn't get ASD statemented he SHOULD get offered some kind of input but she feels it's all on the ASD team,even tho she cannot tell me what they do actually do!

Oh and Roxy we don't judge here.if meds are helping her move forward that's still a great achievement and one to be celebrated

Complain. CAMHS should be providing regular therapeutic input. Therapeutic psychological support should also be in section F of his EHCP, so if CAMHS can't or won't provide it the LA have to fund independent provider(s). Just to show you you can challenge this, there's a poster on the SN boards whose DC hasn't had any psychological support until recently. Their CAMHS and the LA have been appalling, including using won't engage as an excuse (when it's can't not won't), but the tribunal have ordered provision.

1hop I spoke to Sen support services today

Zoo is SEND support an LA service? They will tell you what they want you to know and whatever is cheaper, least work for them. By passing the buck CAMHS and the LA are failing you and DS.

The longer DS is left with little to no therapeutic support the harder it will be for him to engage with either education or psychological interventions. Confirmation of diagnosis shouldn't make much difference, the provision in the EHCP (which is where therapeutic support should be because it gives DS legal protection) should meet the needs he has now, which don't magically change when a name is attached to them. Really the only things ASD specific are ASD specialist schools/resource provisions and ASD specialist teachers.

There have been times DS1 hasn't made any progress, or regressed. It is not a reason to withdraw support. It signifies more support or a different type is necessary.

Sadly parents who can navigate the system, fight for provison and hold the LA and CAMHS to account are the ones whose DC get the best support. It shouldn't be like that, but it is.

I'm sorry DD2 is struggling still, and her frustration is being directed at you.

Welcome Day.

NICE guidelines, which are based on research, state CBT should be the first line treatment because evidence suggests that is most effective. The guidelines for depression in children and teens are here - the rationale and impact sections are interesting reads. Talking therapies don't work for everyone though.

CBT is a type of talking therapy. If it wasn't delivered by someone experienced last time hopefully it will help more this time. Or like you say he may need medication alongside talking therapy.

If you do go private many CAMHS will not allow you to mix the 2, so you may be discharged.

Make sure you look after yourself, you can't help anyone else otherwise.

Personally, if DS is 'only' going to be waiting 4-6 weeks I would see what CAMHS' offer is like first. Realistically by the time you've found an experienced private child and adolescent therapist, and actually got an appointment in the middle of a pandemic you wouldn't be much further on than if you waited for CAMHS.

Some CAMHS care is rubbish, but if you get someone experienced who you trust then the MDT nature of CAMHS compared to private can be helpful. Private child MH care can be rubbish at times too, so you would need to look carefully if you went privately.

Have you spoken to school/college?

MDT = Multidisciplinary team. i.e. a team made up of various professionals such as psychiatrist, clinical psychologist, specialist nurse, OT, dietician...

Are school being helpful?

I have had success in the past of ringing CAMHS' crisis team whenever DS1 reached crisis or had a severe meltdown. At the very least they gave advice and I reminded them we were still there, and sometimes it got us seen sooner. So, don't be afraid to call if you need.

If DS can't go to school in September you can apply for an EHCP, you may want to think about that anyway.

I will also mention in case you have changed DS' age slightly that if he is still compulsory school age the LA have a statutory duty to provide education if he is too unwell to attend school.

Welcome day I can't really add much as 1,hop is our expert on services)benefits as had many years experience
I would say use crisis number.cslls are logged and if it's noted he's having a lot of struggles it can help "prove" the need is great
Look after yourself we generally mean time doing something that relaxes or that you enjoy.i love the analogy we are like a phone battery,you always use it but remember to recharge it it won't work everyone is different past posters have included paint toenails,bubble baths,buying flowers,running by self,reading by self,eating chocolate licking in loo for privacy.it depends on your needs.and it's important to share worries her or in RL or that will take you over the edge too
Fwiw,I'd go with camhsgiven the wrap around care like medic support,loads school etc

embarrassing auto correct error there sorry!shouldve read locked in the loo

Day this explains what an EHCP is.

Have you considered applying for PIP? If DS can't manage the claim himself or deal with money you can do it for him by becoming his appointee.

Zoo gives some good advice on looking after yourself. I eat chocolate, way too much of the stuff. I've not heard the phone analogy before, it's good. I've heard you can't pour from an empty cup and you have to put on your own oxygen mask before helping others.

Just to give you my experience with going private. My 9 year old DD suffers from anxiety. If you look back on the thread you’ll find out more about our situation. CAMHS wouldn’t take her on so we had no choice. I found a private child psychologist online and met with her via zoom for an hour twice before I introduced my DD. She is lovely and DD has now had 5 sessions with her. I also consulted a child psychiatrist privately and used Psychiatry UK. It’s £200 for an initial half hour consultation which I had alone with her. We then had a consultation for one hour which resulted in a diagnosis and meds being prescribed. I know we are lucky to be in a position to afford to go private but I honestly feel we had no choice. It meant things moved quickly and we are currently in a far better place than we were even just a month ago. This is just our experience but I know others have had great help from CAMHS too. Good luck.

Welcome new posters.

Day my eldest DS turned 17 this year also. I have a difficult suggestion, but it may help take the edge off for you and DS. I’m not in the UK but it sounds very stressful worrying about September. What if it takes a little longer getting the right support? Could he take his A levels at a later time (worst case scenario)? I’m sorry if I’ve overstepped any boundaries but it seems to be adding to the anxiety.

Zoo I’m sorry to hear about recent struggles, esp for DD2. I don’t know what to say ... it’s so hard . (But thank you for the autocorrect laugh!)

Hello 1hop [waves]. I hope DS1 has had some good days recently.

I’ve had a couple of anxiety-ridden days after a pretty good week. Heatwave here is not helping. DS1’s psychiatrist called Wednesday for update since - reliving ups and downs is not fun. Certain painful memories trigger me, and can make simple things a real struggle.

Hoping you all have a lovely weekend xx

My daughter had psychodynamic and then psychoanalytic therapy under CAMHS which worked (till they messed up the discharge but that's another story) she is now having that sort of therapy privately. PM me if you want more details

Hi
Have not read the thread but wanted to pop on before it disappeared. I really hope someone might have some advice.

Our dd (14) has been off school with anxiety for ten months. There has been some self harm and suicidal feelings. She was assessed by CAMHS before Christmas and accessed the first level but her mental health nurse was dismayed at how bad she was and referred her on while continuing her 4 sessions. Unfortunately she didn't engage really.

She started a low starter dose of fluoxetine but then lockdown happened and a medication review has not happened. She is perhaps a bit brighter but she does not leave her room unless we are out or asleep at night. (
she deliberately sleeps during the day)

Her new CAMHS person rang last week and she has an appointment at the end of the month. Having spoken to her I am not hopeful that dd will engage with her either (she is picky. )

School were rubbish. If they had been more helpful earlier on, I think we could have prevented the complete retreat to her room. They were most interested in getting official paperwork to protect their attendance figures and once that was in place - little contact.

My own mental health is poor and I had just returned to work after a year having been through a bad episode. Dd became unwell just a few months later.

I think that's most of the relevant information apart from the fact that we are broken hearted... broken as a family and struggling to cope.
We don't know what to do and who to turn to.

Can anyone advise as to what to expect from CAMHS next and what, if anything, will happen if she won't go or it doesn't help.
She is supposed to start gcse's in September. It feels like she will never get back on track.