My daughter won't leave house - anxiety/panic attacks

[tigergoat]

I posted recently about my 14 year old daughter's emetophobia linked to her anxiety. She is under CAMHS but hasn't received consistent support since November for various unavoidable reasons. When she was seeing them regularly, she was making progress. We are waiting for contact from a new MH nurse trained in CBT- hopefully within next couple of weeks. However, now it is half term, she is refusing to leave the house at all because she's afraid of having a panic attack and barely leaves her bedroom despite me trying to coax her on short walks every day. Thankfully, she has lovely friends who do come over to see her. School is difficult for her because of her anxiety and panic attacks but she attends regularly. Hoping to hear from anyone who has been though similar and come out the other end and to hear experiences of CAMHS working or not in the long run. Also, if anyone did go down the road of anxiety medication and experiences of that please. Thank you!

[Runnerduck34]

Just didn't want to read and run so sending you a virtual hug.
My daughter has anxiety and panic attacks and was later diagnosed with autism- I never saw that coming, girls mask very well.
Anyway she wasn't even going to school as the environment was a big trigger for her, so pleased your DD is managing that, I would try and talk to school and ask if there are any adjustments they can make to help her- quiet safe space if overwhelmed etc.
Keeping up contact with friends is brilliant even at home, perhaps a small trip out even to a corner shop with a friend to get sweets and bring back home or similar would help .
Hopefully CAMHS will help ,we didnt have a lot of luck with them as they said my DD wasn't able to engage so they couldnt help. So thankfully sounds like your DD is getting some support.
Medication has really helped my daughter. But its trial and error finding correct medication and dose and takes a while it settle and work.
It's not forever and they can and will get better but it's a long bumpy road.
There is a thread on here called parents and carers of anxious teens that is a good source of support.
Also might be worth looking at the parenting mental health website and Facebook page

[tigergoat]

Thank you! She's on ND pathway for ADHD and she has an IDP (EHCP equivalent in Wales) and school have put so much in place. I need to hear it's not forever so that's reassuring- I'm fine with a bumpy road as long as there's light at the end of it. I'll definitely check out that thread

[JustKeepBuilding]

Does DD have therapies in her IDP? Then DD doesn’t need to sit on the normal waiting list.

[Twinedpeaks]

However, now it is half term, she is refusing to leave the house at all because she's afraid of having a panic attack

Sounds like agoraphobia which is not a fear of leaving home (as people often think) but a fear of having panic attacks which makes people limit the things they'll do (incase they panic) so severely that they can end up house bound.

I have had this since a teenager and it took me 10 years to go on medication . Solved within a few months. I wish I'd tried sooner and not just tried to cope with cbt or rationalising it. Sometimes your brain chemistry needs some help for a while. I was on the medication. For about 18 months and never looked back

[JamSandle]

This was me as a teenager. Antidepressants in my late 20s saved me.

[tigergoat]

@JustKeepBuilding

Does DD have therapies in her IDP? Then DD doesn’t need to sit on the normal waiting list.

She has behaviour support on her IDP. She has speech and language support but that's not on her IDP. Which waiting list do you mean? CAMHS? Or ND pathway? She's not on waiting list with CAMHS- just waiting for new nurse to pick her up and should be imminent. Thanks for your reply.

[tigergoat]

@Twinedpeaks

However, now it is half term, she is refusing to leave the house at all because she's afraid of having a panic attack

Sounds like agoraphobia which is not a fear of leaving home (as people often think) but a fear of having panic attacks which makes people limit the things they'll do (incase they panic) so severely that they can end up house bound.

I have had this since a teenager and it took me 10 years to go on medication . Solved within a few months. I wish I'd tried sooner and not just tried to cope with cbt or rationalising it. Sometimes your brain chemistry needs some help for a while. I was on the medication. For about 18 months and never looked back

At first, I was very hesitant to go down the road of medication but I think it might be the best solution right now or at least worth a try. It's what she keeps saying that she wants too. I just get the feeling that CAMHS are very reluctant to sanction it and want to pursue further therapy- should I push harder?

[JustKeepBuilding]

I meant the CAMHS waiting list. It applies equally to waiting for a new HCP rather than a waiting list.

The therapies should be in the IDP and therefore must be provided. If CAMHS can’t, or won’t, provide it the LA must commission independent provision.

SALT should be in the IDP. From your posts I would say OT as well and more MH therapy too.

[tigergoat]

@JustKeepBuilding

I meant the CAMHS waiting list. It applies equally to waiting for a new HCP rather than a waiting list.

The therapies should be in the IDP and therefore must be provided. If CAMHS can’t, or won’t, provide it the LA must commission independent provision.

SALT should be in the IDP. From your posts I would say OT as well and more MH therapy too.

Thank you! I'll look again at the IDP and talk to ALNCo about ensuring everything is on there that should be. I hadn't thought of OT- that's a great suggestion. Just a little wary of overloading her with input.

[JustKeepBuilding]

Have a look at SNAP Cymru too.

[FatGirlSwim]

@JustKeepBuilding

I meant the CAMHS waiting list. It applies equally to waiting for a new HCP rather than a waiting list.

The therapies should be in the IDP and therefore must be provided. If CAMHS can’t, or won’t, provide it the LA must commission independent provision.

SALT should be in the IDP. From your posts I would say OT as well and more MH therapy too.

my understanding is that this isn’t the case in wales unfortunately. An IDP doesn’t have the same legal status as an EHCP or take the same format. Provision in IDP isn’t statutory as it was when we had statements, as far as I’m aware.

i’d love to be wrong as my dd is similar!

[FatGirlSwim]

So IDP covers school based provision only and not healthcare.

[JustKeepBuilding]

An IDP is statutory and the provision must be provided. See here and here.

SALT, OT and other therapies such as CBT are educational provision, not health provision.

[FatGirlSwim]

My dd is similar but has improved massively over the past year. She isn’t attending school full time, she does an hour a day, but she is leaving the house and starting to speak to people outside the family now.

CAMHS didn’t really work for us as the person we saw alienated her (and us!) at the first assessment. Dd then refused to go back. So hasn’t had any formal therapy. They wouldn’t give a psychiatrist appointment so we never got to discuss medication. Which we would have liked to. They insisted on six months of therapy first, which she was unable to engage with.

A zero pressure approach worked best here, not pushing, not cajoling… and she started to push herself a bit more in her own time.

[FatGirlSwim]

@JustKeepBuilding

An IDP is statutory and the provision must be provided. See here and here.

SALT, OT and other therapies such as CBT are educational provision, not health provision.

Thank you. I’ll look at those links and hopefully I am wrong.

SALT and others are considered health provision by our LA. Is what we have been told anyway. With the new ALN bill nobody really knows what they’re doing it seems, and I don’t pretend that I understand it either! Our dd isn’t accessing education so if we can do something about that, great.

Sorry to hijack, op!

[JustKeepBuilding]

If DD is CSA and can’t attend school full time the LA have a duty to provide alternative provision.

Your LA can say what they like, but legally SALT, OT and other therapies such as CBT are educational provision. The LA may force you to appeal though.

[tigergoat]

No worries re hijacking- helpful for me to hear everyone's experiences. DD just came on a walk with me for a few blocks so that's a big win for today.

[Mysa74]

How is your DD doing @tigergoat?
I'm currently having similar issues with my DD11. It only started about 10 days ago when she was unable to leave the car to go into her favourite dance class... She's not been back to class since and had 2 days off of school when she wouldn't leave her room. On the 3rd day I spoke to the head and he sent her 2 favourite teachers round to speak to her and she eventually agreed to go back to school with them at about 1030. She's been every day since and went for a walk with a friend. I thought things were better but she has another wobble when she couldn't find her ballet shoes and she's back to hiding in her room... her dance teacher phoned but without any luck.
I'm going to start my own thread but was hoping you'd found some light at then end of the tunnel...

[tigergoat]

Hi, I think there is light but the tunnel is very long. Things got very concerning for a couple of months where she was barely eating due to her severe phobia of being sick and she lost a lot of weight very quickly. CAMHS stepped up their support and she was fast tracked into the therapy pathway. She's only had her initial meeting with her therapist and we have the second today. The eating issues have now improved thankfully. Things looked really hopeful a couple of weeks ago when her anxiety seemed to disappear overnight and she was doing nearly all the normal things she used to do, going out with friends, going to beach, no panic attacks in school etc. I told myself to expect a setback at some point but wasn't fully prepared for it when the anxiety crept back in last week. However, she's not as bad as she was when I first posted and I think this is how I need to accept that it's going to be moving forward- faltering steps.

[tigergoat]

Keep working closely with the school- they sound like they're supportive and doing the right things at the moment. Get her referred to CAMHS asap because the wait can be long. One of the biggest challenges I've found is navigating when to accept she needs a break from the anxiety of school and when to push her out of her comfort zone

[TeenDivided]

If they have a different illness you wouldn't rule out medication, so don't rule it out for this.

DD is on Fluoxetine (anti depressant, but has anxiety reducing impact too) and Propranolol (beta blocker). Getting on the meds (Propranolol at 15.5, AntiD at 16.5 approx) was a game changer for her, and allowed her to engage better in therapy and school/college work. We are 3 years in and still a work in progress, but so much better than before she started the antiDs 2 years ago.

We never did get to the top of CAMHS wait list before she turned 18. We went private for Consultant Psych and got therapy via another route.

[tigergoat]

I tried for Propanolol but she'd been prescribed an asthma pump a couple of months prior for tight chest and shortness of breath (which I think was more related to her anxiety) so they wouldn't prescribe it. I'm more open to medication now than when things started but she has to go through all the CAMHS therapy process first. And so many of the meds cause nausea which is her biggest fear

[Mysa74]

Thank you, tigergoat. School are brilliant. She's been okay over half-term, even managed a trip away to a familiar holiday place and she came down to the beach and went swimming every day, the rest of the time she stayed in her room writing. We didn't manage to tempt her in to the evening entertainment (had to drag her out every night last year as she wanted to stay to the end at approx 1130)...
Will have to see how it goes tomorrow with back to school.
It's so difficult knowing when to push and when to back off 😌

[Mysa74]

I'm glad some positive things are happening for your daughter, the weight loss must've been particularly worrying on top of everything else. How are you going? Waiting for the set back can't have been easy either. Xx

[tigergoat]

Hi Mysa, sounds like she got the most out of the holiday that she could- which is great, lots of positives to take from that. I wouldn't worry about the evening entertainment- not everyone's cup of tea anyway and those things can be loud and overwhelming. And writing is definitely good- I'm trying to encourage my daughter to keep a journal of sorts, just so she can look back at the positives when things are hard, to see that it's not all rubbish. And that very often, the things that she dreads, often aren't as bad as she thinks they're going to be. Today has been a bit fraught with pre school nerves so I'm dreading the morning and possibly being bombarded with messages when I'm in work. That's also very stressful. She wants to be in school and be with her friends and do well but the anxiety gets in the way of that. We also have the hurdle of her going to her first stadium concert with friends on Tuesday which she's also very anxious about. I'm going to have to hang around near the venue in case it becomes too much and she needs to leave. I really hope she goes and enjoys herself. Good luck with school tomorrow xx