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

Thanks Anne. I’m already paying for the psychologist so I’m happy to pay for whatever she needs. I’ll see if her current psychologist can refer us to someone.

Welcome Sex and Theodore.

Sex, in most (? All but can't be 100%) CCGs GPs can't prescribe antidepressants or antipsychotics to under 18's without them being initiated by a psychiatrist. I agree with Anne, if you can afford private you could go down that route. If you do I'd carry on with the CAMHS referral so when you get seen you have access to an MDT without having to pay ££££. Also, let CAMHS know what's going on. I and others on MN have have had success in ringing the crisis team whenever DC are in crisis. That way CAMHS know exactly what things are like, you may get an earlier appt. and also they'll give you tips on how to manage situations. This is one of the reasons DS1 was referred to tier 4 CAMHS.

EMDR is amazing for lots of people with PTSD. My DS1 has PTSD as his primary MH diagnosis. At the moment he isn't able to engage with EMDR or trauma focused CBT but the aim is to get him to a place where he can. DS1 takes Mirtazapine and Risperidone which have helped somewhat.

Theodore, that sounds tough. My DS1 has separation anxiety. Is DS1 on medication for his ADHD?

Anne, I'm sorry things are so difficult right now. The depression, anxiety and probably the eating disorder will be secondary the ASD. Trauma rates are also higher in people with autism. Also, someone on SN section has a DD a bit older than yours whose DD is in a subsection of people with autism who perceive things others wouldn't as traumatic. So they are probably all related. Did you ever apply for an EHCNA? Because MH support can be put in place there too. It sounds as though DD needs some intensive support week in week out at the moment.

Yesterday afternoon we found virtual appointments have a big downside. DS1 can end the call when things get emotionally difficult for him! I was not impressed.

Hello everyone and welcome Theodoreb and sexnotgender.

Can I ask a quick question, dd is 15, nearly 16, she has difficulties speaking to people she doesn’t know, especially in medical appointments, so up to now I’ve done a lot of speaking for her, however I’ve noticed more and more recently that the medical staff don’t want me to speak and push dd to answer, I think I probably just come across as someone who won’t let there child speak for themselves, I was considering just saying up front that dd has high anxiety and dislikes talking. Has anyone else got any experience of this? Thanks

Thank you for lovely welcome

Yes DS takes adhd medication and sleeping tablets, they are really helping we have high cahms input and Ds was expelled from high school no school will take him so he had a tutor before all this and will be going back to having a tutor after corona.

I have a psychiatrist support letter so may try again to get him in a school but being honest he copes so much better with his tutor there is another girl his age in the class, and he goes to boxing which I have to wait outside for otherwise he won't go.

@Stilllivinginazoo sadly we are having the same issue with chemicals.

Indispair it sounds like Selective Mutism, which is an anxiety disorder. DS1 has SM as part of his list of MH diagnoses. He is younger but some professionals often want to hear from him. When they want him to answer and I know he can't I say "DS1 has selective mutism and can not answer you." I also correct anyone saying/writing "won't" talk rather than "can't".

We don't pressure or bribe him to talk, but equally we don't praise him for speaking in public because that would draw other people's attention to it - something that would be harmful. However, I jump in if it is a MH appointment where the aim is the improve his ability to speak to others. Because your DD is 16 she will have to give HCP permission to speak to you.

Theodore, does DS have an EHCP? If not, you should apply.

Has he been permanently excluded from one or more school? For someone without an EHCP, if it is twice then for 2 years from the last exclusion a school can refuse to admit. However if it is longer or only once they can not. If DS doesn't have an EHCP read your LA's Fair Access Protocol, it will mention permanently excluded pupils. If he does have an EHCP there are only certain situations the school can refuse to admit.

Was the exclusion fair or did they not make reasonable adjustments? Depending on how long ago it was if they didn't you should consider a disability discrimination case.

You could also call IPSEA or SOSSEN. They have advice lines and useful info on their websites.

Do you get DLA? If not you should apply. You too Sex, but it will be PIP for your DD.

We have managed to get DS1 into the garden.

@1Hop he was expelled last October, a teacher was on his back and he basically made a fake police report about a teacher and hacked the school website and uploaded it there. It was a permanent exclusion. However somehow DS letter of support from Cahms saying that DS now understood the severity of his actions and would not do this again got lost the fax machine was broke and they wouldn't postpone the hearing till I could get another letter to them. Showing DS had shown much remorse and that his psychiatrist felt it was a result of being frustrated with his adhd and had increased his medication.

I don't know what a EHCP is would appreciate enlightenment I did ask school for a Ed psych but they refused and said there was nothing wrong then as soon as DS did that they were all saying there something seriously wrong. Police interviewed him without my permission or presence. School said that police were going to press charges but when I spoke to police they said they never said anything of the sort.

Tbh it was handled like a shambles I don't want him back in the same school as they did nothing to help DS mental health problems but I would like him in another school.

I have also changed DD1 comprehensive school as she has ASD with full 1:1 and if they ignored my DS needs don't feel confident in their ability to cope with DD1.

Welcome SNG as you can see onehop is brilliant at knowing rights,benefits and what to ask for help wise.i am among the many who are grateful for her extensive knowledge

Anne dd2 will only eat certain foods and I've heard various phrases bandied about regarding eating disorders.she also is very low currently.i dispair at camhs.ive been informed they aim to get girls her age to take control and manage themselves.all well and good but asking her what will help she's no idea unless they give her some ideas,and her capacity to down play is legendary.i swear they think I'm just an overanxious fretting mother...

DS also hates speaking in front strangers and I'm often given sharp words like I'm talking for him in interfering way.i think I'm going to find it very hard having interact all services again as they start open up
TAF are currently proffessionals only on zoom making me very very distrustful of them all

An EHCP is a legal document that sets out a child's needs and what provision they need in order to meet those needs. Here explains it well. If your DD has a full time 1:1 does she not have one? In Wales and NI it's a Statement of SEN and in Scotland a CSP.

An EP assessment would be part of a EHCNA.

It's too late to challenge the permanent exclusion or go down the disability discrimination tribunal route. But if he only been permanently excluded once schools can not refuse to admit because of it. If you can't find your LA's FAP and would like me to see if I can find it you can post or PM your LA if you want to.

CAMHS really should be helping you with this.

Zoo, why aren't you part of the zoom TAF's? Others have helped me over the years so I don't mind helping others. It just makes me annoyed professionals don't point people in the right direction.

@1hopforward2back I did sort out something like a statement for my DD1 however that was 7 years ago and I had a mental breakdown in between so can't remember the procedure anymore. I will start looking into one for DS1 and speak to Cahms and see if I can get him in a school for September just hard right now with everything going on.

Indespair I have a slightly older daughter who had severe selective mutism for over ten years. It was eventually cured with anti-depressants from CAMHS. If you would like to know more about what helped, how and when, please send me a PM as I don't want to go into details on a public forum.

If your DD has an EHCP you should have annual reviews that you are invited to, and the plan should be amended afterwards. If you are in England and it was a statement of SEN she should have transitioned over to an EHCP.

IPSEA have a model letter on their website you can use to request an EHCNA for DS1.

Sorry to hear you've had a difficult few years.

X posted with you Roseau18. I'm glad your DD has improved.

Best practice is medication should only be used in conjunction with other treatments. The preferred one being CBT, but gradual exposure and other therapies are also used.

These are the NICE guidelines for social anxiety disorder, which SM is associated with.

I don't think DD1 has a statement I'm not sure I know it's reviewed every year with Ed psych and her 1:1 I go to a meeting in school and they tell me what is going to change if anything, she has been given a few additional aids like a bumpy chair for sitting on during assembly or when she has to sit still and ear defenders and some sort of fidget device that she can use when in class.

1hopforward, she had already been having therapy for several months before she was given medication. The medication was for depression and it was an unexpected side-effect that it cured the selective-mutism, almost instantly (obviously not instantly as it takes about a month for the full effect to kick in but you get what I mean).

Unfortunately, although the selective mutism has disappeared, she still has other serious mental health problems.

Roseau, it's nice to hear a positive side effect. I was just pointing out for others that meds alone shouldn't be used for SM. I think we've spoken on other threads before. I'm sorry to hear that other aspects of DD's MH are still difficult.

You should have the paperwork from the annual reviews, Theodore, that will tell you whether it's a statement, an EHCP or neither. Afterwards you should receive an amended plan. It sounds like your DD1's school is supportive. You can ask for support to be added too. Has she seen an OT? Your posts suggest she would benefit from doing so.

Have you had social care assessments? Carer's assessment for you and assessments from the disabled children's team for DS1 and DD1.

Struggling to get DS1 into the garden this morning. He says the birds and DS2 (who isn't making a lot of noise) are too noisy even with his ear defenders on and the sun is too bright.

Hello to new posters - welcome.

Anne I’m beginning to think your DD’s issues are mirroring my own DS1. ASD, Anxiety, depression, possible ED right down to disliking any protein/hidden calorie shake I’m desperate to give him. I’m at breaking point and emailed his gp. He is underweight although managed to put on a couple of pounds since last gp appointment in February. Very worried these small gains will dissipate very soon. Hugs and chocolate to you

Zoo I have same problem re: your DD2. DS1 answers “I don’t know “ to everything. Hoping things are better on your end soon

1hop we are so lucky to receive the wealth of info that you so selflessly offer everyone on this thread. Hope today is a good day on your end.

Lack of sleep here from worrying so much these last few days. Praying the gp can offer some practical advice for time being.

@1hopforward2back when all this is over I will ask school and find out. Yes DD1 school is very supportive, DD1 has seen OT they also got a OT to come out and make modifications to the house like putting stop taps on my sink as DD1 likes to run them and boxed in my landing as DD1 liked to climb them. I have carers and DLA for both DS1 and DD2. However DS1 was only awarded middle rate care as dla said there was no evidence of night time needs however I know have a documented evidence that DS1 takes sleeping tablets and has trouble sleeping and as he has anxiety often requires support to go to sleep. But I don't really want to request a appeal as I got awarded till he's 16 so I am happy with that.

Oh and reason I am not sure about whether DD1 has a statement is because I gave up custody for a period of 18 months while I was mentally unwell. Then ex DH was discovered behaving really badly so I fought and re gained custody Last June so I am trying to catch up with everything and get on top of everything again.

Thanks for the advice everyone, I’ve now read up about selective mutism and the NICE guidelines from 1hop and it’s interesting, definitely something to keep in mind as quite a few of the pointers are relevant to dd, I’ll speak to her early help professional about it.

Viking, I hope you hear back from the GP soon. Eating problems are so difficult to deal with. Don't forget to look after yourself.

Thank you, I've had just as much support and advice on this thread and MN in general. Coping with children with additional needs is hard. Anything that can ease the burden somewhat should be more widely known.

I am glad DD1 has seen OT, Theodore. A good OT is worth their weight in gold. 'Just' help going to sleep and sleeping tablets won't be enough for HRC. Night needs are classed as when the house is sleeping, so getting a child to sleep would normally be day needs. It also needs to be repeated or prolonged. For example, if DS woke up multiple times a night needing your help or supervision then that would qualify for night time care. If you haven't already had assessments do ask social care for them.

I really should get on with some paperwork, but I'm lacking motivation today and have spent far too long on MN.

1hop thank you .
I have a phone appointment Monday with his gp. My self care tonight will consist of some good wine.
Hopefully DS1 spent some quality time out in the garden today.

Hello everyone, could I join please?

My DD is Y3 and has suffered increasing anxiety and panic attacks since being small. She was considered too young for cahms when we first asked GP for help so we’ve just carried on alone. We are now getting some support and advice from the family services team in our LA, as DD stopped being able to attend school altogether in Feb this year due to horrible extreme anxiety.

Just before lockdown we had a one to one meeting with one of the LA team who suggested we consider ASD. After reading some of the support material they sent, it has completely made sense to me. I also have a DS with very high anxiety although no problems with school.

It’s all been such a rollercoaster and then Covid on top. I haven’t been able to talk to anyone about it and have no idea what will happen now.

jollyyelkahumberella welcome
Viking hope wine was good.will be thinking of you over the weekend and I really hope gp can help monday

I hope your went down well, Viking.

Welcome, Jolly. Sorry to hear DD is struggling with anxiety and out of school. Are the LA providing education? Either home tutoring, online, at hospital or a small unit. They are legally obliged to educate those medically unfit for school - this includes anxiety. Also, if you haven't, apply for an EHCP.

Do push for a referral to CAMHS, she isn't too young, that will have been said to make you go away. Leaving you with no support is rubbish. When will services learn that early intervention saves them time and money and children's MH in the long run? However, it may be a developmental paediatrician that diagnoses ASD in your area.

After failing yesterday I am determined to get DS1 in the garden today.