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

I think you're right@Stilllivinginazoo but I just want to check. We have got DD into school for the last 2 days and will do the same tomorrow.

Thank you all for the welcome earlier this week and hugs all round. We are now at home with DD1 after the AAA battery she swallowed passed through yesterday. While she was bored I think she felt safe on the hospital ward.

Meeting yesterday with CAHMS and her school. I found it really difficult (like cried through half of it) but was helpful in that CAHMS emphasised how difficult the aftermath of bullying can be.

Really torn about her returning to school. Current plan is half days while we work our approach out.

I finally heard back from. CAMHs who were very pleasant but told me nothing I dont already know. She has high anxiety levels and low mood. They recommended CBT which has a 6 month waiting list so we will need to go private. They also said we should spend time with her , like we dont already.

Its her first full week at school next week which I am dreading as her entire friendship group have been asked to self isolate for 14 days as they have had close contact with someone who has covid in the school. That will mean DD has 2 week of break times without friends to look forward too. We have had 10 days of no self harming with only 2 half days and 1 full day of school in that time. I am really worried this will set her back but I also cant tell her she can stay at home.We are going to have a very tough time keeping her in school but I have told DH which must be strong and tell her 2 weeks isn't forever. It may actually force her to make new friends as she sticks to this group like glue.

@DayB1Day. Do you mind if I ask if your DD had any developmental delays like delayed speech etc or signs of autism as a young child ? I am convinced DD has ASD, she has loads of sensory issues, hates noise and crowds which is why she is finding school so hard, always had issues with friendships in terms of keeping them, says she doesnt understand people. But when they did the ADOS assessment she was diagnosed with 'traits' not actual ASD as we had said there were no early signs . She walked and talked at the right age and she didnt have any issues with how she interacted with other children. I just wonder if girls present differently in the early years.

Thank you. Yes we are under tier 3. She had a full ADOS assessment under tier 2 last year but this time even the psychologist who assessed her was hinting at ASD. He even asked what happened with the ADOS assessment last year which implied he thought it was odd she wasnt diagnosed then. They have a hospital team who see more complex cases and asked me to complete a screening form which asked 3srly developmental questionslikedid she share toys etc . Apparently the score was too low. But yet shes now at aged 15 a walking stereotype of ASD.

They do sound similar. I had no concerns in her early years , but she is our eldest so was our only reference to normal. I'd day her issues came out in primary school as she struggled to make friends. By year 6 she had none at all . She's now in year 10 and is on the periphery of a nice group of girls. She plays Roblox for hours , has loads of sensory issues with sounds and touch,she avoids social situations and gets so stressed if she sees her friends out of school she ends up with a headache, she has to know where we are going otherwise she won't leave the house.

She also can't understand abstract language such as poetry or when shes asked to describe things. She's just too literal. Like you, I dont want an ASD diagnosis but if it gives me answers then that's the way to go.

Sara and day D's had no "red flags" til primary as siblings close in age led play.he had no friends bar one all thru primary.he never got invited to parties.its only as he's got older is become noticeable he's "different".he has just received ASD diagnosis.we were about to start process youngest(DD) dd2 was the one I suspected of ASD,yet now she's least "obvious" .she has eating issues now
I believe it was step who said ados aren't recommended for girls as they can mask round it

Zoo I hope DD2 has recovered from the effects of the propranolol. I'm glad you've finally got a diagnosis. Does that help you with the EHCP? As DS' anxiety lessens some of the ASD traits will become less obvious, but that shouldn't mean the diagnosis is removed, just that the traits aren't overt because his environment is less anxiety provoking.

teelizzy I'm glad DD1 is home.

Sara DS1 has physical manifestations (jerky movements, twitches, intermittent functional limb weakness, tachycardia and ectopic beats, headaches) of anxiety. All were checked to rule out organic causes. The CP is working on getting DS to recognise the symptoms he feels are related to anxiety.

Girls with ASD do present differently. As a young child there were limited signs in DD2, and the signs that were present I didn't recognise for what they were until later. Although I didn't notice DS3's ASD until DS1's CAMHS' team pointed it out, but it's blatantly obvious now.

For high functioning females DISCO is more sensitive than ADOS. It effectively highlights the different, often subtler, presentation of females, whereas ADOS doesn't always. The ADOS does pick up things you may think it won't though, it is designed to elicit certain behaviours. The Lorna Wing use DISCO and are world leading at assessing girls and women. I would ask for a referral to someone specialising in girls. They will be well aware of excellent maskers and the ability to imitate social interactions.

Eating disorders are common in people with ASD, with an even higher prevalence in high functioning girls. ARFID is often linked to ASD. DS1 (who doesn't have ASD) and DS3 (who does) have EDNOS.

Day sorry to hear about DD. Sadly there are waiting lists at every level, including many waiting for tier 4 beds.

As a side note Asperger Syndrome is no longer diagnosed. It is now encompassed under the umbrella Autism Spectrum Disorder.

Exhausting week, including an initial sleep clinic telephone call to collect information before the main appointment. I will love them forever if they can help.

I am really dreading the next 2 weeks with her entire friendship group told to self isolate. Shes already making a fuss about being 'forced' into school and left to walk around on her own for 2 weeks. I really have no patience for this crap.

She was up at 3 this morning working herself into a state about being alone at school for 2 weeks. I cant give her 2 weeks off just because her friends arent there. I find looking after an anxious child so very exasperating.

@1skipforward2back
Thank you for all that information about ASD. I went and dug out DD'S nursery report earlier which confirmed she was developmentally typical at that age. That what I thought so it was good to check. She had no speech or walking delay and she had no concerns with her interactions with peers etc. The report even comments on how she takes turns with peers and plays with other children. I have had a look at the Lorna Wing and it looks interesting. I might email them to ask if it's still worth getting her assessed if she had no early signs and then if they say yes I will get her assessed once we have exhausted the CBT and measures to control anxiety. I have found some useful podcasts called flustere clux all about anxiety and depression I children and teens. Dd is definitely displaying more ASD traits at the moment but they could be anxiety based.

I meant Fluster Clux.

I wouldn't rely on nursery to spot signs of ASD in girls. Even now many nurseries and schools (and HCPs) are under the misguided impression ASD is only the stereotypical boy presentation. This view was even more prevalent 5-10+ years ago. They don't see the high anxiety, masking and social imitating girls typically present with.

DD2 didn't have a language delay or other delayed milestones, in fact she was rather precocious. She was, and still is, adept at copying others' behaviour.

To nursery she didn't have a problem with imagination. What they didn't recognise was her play mirrored real life events, and the same scenes would be played out repeatedly. This trait was magnified when taught creative writing. Her writing was excellent, however she struggled to begin because she lacked ideas.

Nursery saw DD2 as a shy, mature, compliant girl with advanced language skills. Her language skills were advanced, in that she could use and understand words beyond her years, but her social communication problems weren't recognised. As a 'people pleaser' she is compliant, with the anxiety that often goes hand in hand with that. Basically they didn't see a problem because DD2 was quiet and flew under the radar.

skip I think this has happened with all of mine tbh
Lil zoo is very shy/quiet but highly academically able
She's not been in school since last Tuesday as IBS pains are giving her so much trouble she not sleeping(doesn't sleep well anyway)
Anxiety fuels it all,plus refusing to go to looat school/anywhere but at home.she was refusing eat/drink on school days til she's home,which adds to her gut issues
She's also becoming very withdrawn/depressed which is a bigger worry to me than school.we areon a waiting list for camhs and school are ment be doing ASD application,but they haven't yet,saying there's been no flags with behaviour etc
I contacted head year thursday.hopefully at some point will get an email back

Zoo, I hope DD3's IBS symptoms and anxiety have eased.

The assumption you can't have any additional needs and be academically able is infuriating.

During a F2F appointment this morning DS1's CAMHS nurse joked they hadn't missed sitting under our table during home visits and it was much more comfortable being able to sit on a chair and be under our table via video. DS did not appreciate the joke and took it as a personal insult.

skip tbh that was rather un called for...I feel a bit insulted on both of your behalfs😞

Lil zoo isn't any better.school have insisted she returns,despite me explaining she WILL NOT go to loo at school,never has and she won't eat or drink before school,and rarely eats snack she takes in for lunchtime.refuses ti drink til gets home
They said bring her back we talk to her

Thank you for the invitation @1skipforward2back I very much need some support with my DD. If it’s ok with you I’m going to dump everything in this post and then read the thread so I can join properly.
DD is 17 in upper 6th taking A levels and applying to universities. Or she would be if school hadn’t excluded her.
She mentioned this summer that she may have ADD. Started looking into it and asking her about anxiety, depression, self harm. She said all 3 had been pretty much present for past 2-3 years. She was badly bullied a couple of years ago & was never fully resolved. Spoke to GP who suggested private psych referral as camhs long waitlist etc. She’s been ‘seeing’ private psychiatrist since August, started on fluoxetine. Assessed for ADHD and he’s not 100% sure but started methylphenidate last week. Is also on melatonin. 2 weeks ago she overdosed on paracetamol on the Thursday night but didn’t tell me until Friday afternoon. I collected from school & took straight to A&E despite it being over 12 hours later. They did bloods, ecg etc. She also disclosed that this was her 2nd attempt in 3 weeks. The A&E doctor said that she could stay overnight but may not be seen by the psych team until Monday or we could go home if I could keep her safe. We agreed to go home. A&E doc spoke to who I assume was a psychiatrist on the phone who agreed to let us go home. The A&E doc said someone from the ‘community team’ would call us on Monday.
I emailed our private psych to let him know what had happened and we saw him on the Monday after school. He upped her fluoxetine, started her on ADD methylphenidate low dose and melatonin for sleep. With a review 5 days later. We had no call from any ‘community team’. No one said anything about her not attending school.
A few days later DD received a call whilst with school friends walking to the train from someone from ‘community team’ they said something about referring her somewhere. She has no clue as wasn’t focused on the call .
I called camhs the following day to ask them about it. They said they can’t tell me anything as she’s 17. She was at school so I couldn’t get her permission. They’ve not called her since.
Meanwhile she’s in school, taking tests pretty much every lesson and not performing as well as she’d like. It’s a stressful year. A particular teacher was also quite rude & harsh which made her cry. Because of these 2 things we decided to tell school about her mental health. I told them on Monday and they said she mustn’t return on Tuesday and until they’ve had confirmation from her psych that she’s allowed in school.

So she’s currently excluded and at home whilst we chase the psych for this letter. Who is seriously busy and won’t be immediate.
She’s booked in with a private clinical psychologist for CBT/DBT - talking therapies or whatever they decide is best in 3 weeks time. She’s very open to do this. She’s also due an ASD assessment. It’s all private. Seriously £££ but I’m reluctant to wait for camhs given there’s huge waitlists and not telling us what’s going on.
We don’t know the usual processes. Feel very much in the dark. Plus incredibly let down by the school and whoever the ‘community health team’ are.
Any guidance very very much appreciated. I feel my head will explode.

She's excluded for having mental health issues?us that even legal?
I'm sorry things are so hard
Inclined to agree a wait for camhs is a long term position

Yes, she’s excluded until they get the letter from the psychiatrist. They’re saying ‘duty of care’ and ‘safe guarding’ but she’d been attending daily no problems after her overdoses. So it’s just them covering their backs. Had we not told them they wouldn’t have known. I’m sure in a state school the only reason to exclude is due to behaviour and this exclusion would be illegal. It’s ironic because I’ve another friend whose DD struggles to attend and they’ve been shocking with her. Because if their treatment I was loathed to inform them of our DD struggles. We only told them as we thought they’d be a bit more lenient with expectations. Didn’t think they’d exclude her. It’s made her so much worse!!
Anyway, the psych has written a report which I sent them last night. They also want her to sign a ‘contract’ before she’s allowed back in. So I’m pushing for that to be done today over zoom so 1) I can be present and ensure it’s not actually a ‘contract’ with consequences 2) it centres her wellbeing and not just them covering their backs and 3) she’s not pulled from a lesson with everyone querying why. She wants to keep this confidential. I get that.
Private psychiatrist & therapy & meds & assessments is going to add up to a stupid amount but we are incredibly fortunate that it is an option. Especially as there has been zero holidaying this year.
She’s ok ish this morning. Better than yesterday. School emailed her giving her a lower grade for her UCAS predictions. So she can’t apply to the universities that she wants. She was going to send her forms in this weekend. We’ll try to find other universities but we’ll also see if they’ll up the grade again. But that may take time, and she needs to get them in and off her mind! Tbh she isn’t performing at A grade in that subject at the moment so dropping it to B is a fair prediction but it rules out 4 of her 5 choices. If she was well she’d be likely to hit an A, if all went well. The pressure isn’t helping. I’m thinking a gap year would be good but she’s not interested. She wants a great course at a great uni and it’s a lot of pressure. It’s made me really look at how we’ve raised her. I don’t think we’re pushy but must have been.
Regarding my support, I’ve got a few friends locally who are understanding and supportive but going through their own crap too. I can’t tell many people as they’ve DDs who they may share with etc etc. I need to keep her confidence.
I was a mess yesterday. Today better.
I need a holiday. We all need a bloody holiday!!
I’m still trying to catch up on the 13 pages of this thread. There’s a lot to take in and a lot of abbreviations Im having to google.
What’s the 5 day review?