Parents and carers of anxious kids/teens(part5)

[Stilllivinginazoo]

Hi guys
Just spotted we have filled another thread!
I started part 1 during the journey with my sons escalating anxiety
This thread is a non judgemental place to support each other
As parents and carers we recognise how hard,stressful,and often lonely,this unseen battle can be.others dismissing small wins as the norm for most etc
Please feel free to offload here,share your small wins,take the support and comfort this thread brings

Get well soon Zoo.
Nice to hear from you Viking, this thread is definitely my tribe too! I hope DSs medication makes a difference.

DDs 15th birthday yesterday, she had a good day, had a friend round and they went to a pottery painting place. Was lovely to see her happy
Shes doing well atm, I mean not back to "normal" whatever that is-she was zoned out most of today today after socialising yesterday but she can now leave the house without trauma and is actively engaging with activities.
The hurdle we continue to have is getting the LA to provide her with an education, still no news, very frustrated by it all, worried she will end up with no GCSEs as she simply cant access her mainstream school and the LA have no regard to their statutory duty

Viking lovely to see you. How are you? I hope the sertraline helps. In England the local authority have to make provision for DC who can’t attend school, do you have something similar? I hope things have settled down with DS1 slightly.

Zoo fingers crossed you aren’t all too unwell.

Runner lovely to hear DD is managing more now even if she needs time afterwards to recover. Have you threaten Judicial Review? Apologies if I have asked previously.

Cantonet DS did brilliantly with his mocks. It’s really trial and error to find the right medication and the right dosage, isn’t it?

Runner if you would be interested SOSSEN have a webinar later this month about DC out of school and how to enforce DC’s rights.

Thank you Leap, yes I would be interested in the webinar, I will look for it.Thank you for thinking of me, I really appreciate all your advice, its a godsend.
Still no update on education for DD, have complained to LA again but not sure if they will do anything as we are currently appealing ( although they probably wouldnt do anything anyway!) I keep looking at judicial review, seems a daunting expensive process but maybe worth just threatening it even if I probably couldn't follow through, but from the brief reading Ive done it looks like we could have a case (if we could afford legal fees!) However do I have to wait for tribunal before threatening judicial review? We have just changed our appeal back to EOTAS as I cant find a school who can meet her needs and not sure how and if DD would fit back into her year group at school after missing so much education-she has had no meaningful education since start of year 8.but by age she should be over halfway into GCSE study/ year 10,

Her anxiety has really lessened and she is engaging so much more, yesterday she asked to go to a local cat cafe and ordered her own food, sounds really small but thats nothing short of miraculous to where we were . However its still a big jump from 45 mins in a cafe to full time at school.
I think her new medication is really helping, so pleased we changed it, wish Id pushed for a change sooner, the previous one did help somewhat but she was still too anxious to leave the house.
Cant, Canto, Viking, Tiktok, I really hope things are improving with your DCs medication.
How is everyone ? I hope you are feeling better zoo, It took me a good couple of weeks to feel back to normal after covid. I have now decided to try and get fit and have this exercise app on my phone, my idea being I can fit in short 10-15 mins blasts of exercise much easier than doing an hour all at once. However every bone in my body is now aching and Im hobbling around like Im 100 years old so actually feeling worse not fitter! Hope you all have some relaxation this Easter.

Runner You don’t have to wait for tribunal. JR doesn’t need to be expensive. You have to pay for the pre-action letter (SOSSEN are reasonably priced and can sometimes help with these). Often the threat of JR is enough, but if it’s not a pre-action letter mostly works. If it doesn’t proceedings themselves will be in DD’s name so she can apply for Legal Aid in her own right.

Was dd2 18th birthday yesterday
We went to town with birthday money(just the two of us) and she was quite anxious but had a nice time.
Very anxious about offer dd1 has made to go to dinner tonight with lil zoo(sister date).eating outside the home is very stressful for her
She's already having meltdowns over it,but I think having covid,then be very exhausted her world's shrunk so much her anxietys uncontrollable and she has to push herself forward

Thank you so much leap, I have also signed up the sossen course you suggested.
Tribunal have just ordered that LA either accept EOTAS or name a school ( with details of staffing, peer group etc) by 10th May ,so see what happens then. I'm hoping they will agree EOTAS but a bit scared they will name a unsuitable school. Of course they could also fail to comply with order ( have done this several times already!!)

Zoo- Happy belated birthday to DD2, so pleased she had a good day.
Did lilzoo make dinner with DD1? I hope she did, its lovely her sister wants to take her out.

Zoo Happy belated birthday to DD2. I hope she manages the meal out.

Runner SENDIST is a mess at the moment, lots of adjournments for lack of court time. Very frustrating.

We had a near disaster dd1 dh dropped with covid yesterday lunchtime tested + in lft they had kicking around
They still went as dd1 tested -
As requested I help dip dye her hair,and lil zoo was v excited to eat out and picked outfit first thing etc dd2 was bit anxious all day,but because we had some uncertainty if was go ahead never got fully revved up
Was very stressed after from "holding anxiety in' but did say it was a nice meal.they ate outside which helped and the country pubs lass 15 mins away by car both of which helped
She's off out with dad today spending some more ofbirthday money this morning

@Stilllivinginazoo I’m glad DD2 managed the meal out ☺️ and great new your DD is doing well on her medication @Runnerduck34. My DD has been doing really well on Sertraline. We switched from fluoxetine last summer. I just wanted to post a big step forward for my DD. After having a panic attack on our last flight 3 years ago, she managed to fly to Birmingham and back this week. I couldn’t get anyone to prescribe Promethazine but she managed without. I followed your advice @1leapforward2back and contacted the airline and they were fantastic, fast tracked through security and one of the first to board. Thanks again.

Thats fantastic news Roxie!
Leap, tribunal process has been a bit disappointing, hearing date rescheduled twice ,I thought they would be more on it.
Pleased dinner worked out Zoo , I know masking can be exhausting but she did it. Hopefully she can recharge . we went out to dinner yesterday for my birthday ,
of course new rules mean calories are now printed on menu . as an overweight middle aged woman this was helpful but totally triggered DD1 who was very ill with anorexia a few years ago it was very revealing at how it still impacts her . I thought she had completely recovered.

Roxie that is wonderful to hear, and such progress. We have always found airlines and airports helpful.

Runner Happy belated birthday. If it would help DD1 you can ask for menus without calorie information. SENDIST is overwhelmed at the moment, there’s not enough court time for the demand. The Legal Aid system for SENDIST appeals is in an even worse state.

Zoo It is good DD2 managed the meal out. I hope she enjoys shopping today.

Roxie oh lovely,I'm so pleased for you all.she did fantastic!
Runner my girls aren't impressed calories on everything.dd2 chose things based on guilt not flavour on her meal out,and today she had a voucher for a free cake for her birthday at Costa and chose not the delicious muffin she spotted,but a Bakewell tart based on calorie info/familiarity what might be in it.i really see no benefit to it all tbh.those that eat out all the time who it's targeted at won't care a fig,leaving those that are triggered by it all suffering

Today's trip was ok.dad put both feet in it complaining her purchases were boring(chose a weighted blanket and a duvet cover to put it in) which made her feel sad

Since we didn't see him much during covud pandemic he's become much less competent social skills- he doesn't listen properly,saying I know or talking over us/wants everything done his way/has no tact and is as blunt as a spoon

Well done roxie dd.

I have spent day on phone to cahs crisis line, then 111 when I couldn't get through again who put me on to ooo mental health nurse who has been amazing. He has called 3 times, assessed dd, very high risk but she doesn't want to go to a&e so he referred us back to crisis line with exactly what to say. They have referred to the next tier so we have someone coming to do a house visit in an hour to talk to her.
Hopefully it will help her. Only reason she hasn't hurt herself is because I have removed all means.

I'm so sorry tiktokcat, thank goodness the MH nurse was helpful and I really hope house visit is helpful and DD feels a bit better. Sounds beyond stressful for you. I hope its calmer tomorrow and DD improves, thinking of you both 💐

tiktok hope the visit helped,and thank goodness for a helpful nurse
Thinking of you

Thank you. We got through the worst. She is a little brighter today thankfully. Gone from a 0/10 to a 2.5/10

Glad there some improvement *tiktok"

We had bit more birthday shopping with dad
She's very overwhelmed

We live a few minutes walk a preserved natural area,so I took her there before sunset.she walked barefoot in the grass,got very excited over masses wild rabbits and the birds were singing.it was very grounding for her,then home for a shower and hopefully that will have bought her down a few notches!!

Happy Easter to all 🐰🐰

@Tiktok thinking of you & your DD & wishing calm & serenity.

@Zoo what a fabulous time your DD has had for her Birthday.

@leap I'm glad your Ds has done well in his mock exams too. Now all we need is to get through the real ones 😨. A frightening proposition for us, not helped by DS's first two exam days have morning & afternoon ones on two consecutive days.
Who did the timetable this year?

Tiktok I hope DD has continued to improve.

Cantonet apologies my post wasn't clear, I meant your DS did brilliant in his mocks, to even sit them was amazing. My DS's aren't GCSE or A level age yet. But I know what you mean about the timetable, both DD's had days with 2 exams.

Morning,for those returning to school today I hope it wasn't all tears and meltdowns

Lil zoo was up at 4,crippling tummyache,so she's not gone
DS was very stressed entire holiday fretting about returning to school,even when v poorly with covid he couldn't stop worrying over it☹️
Dd2 did better than I expected this morning.she was very stressed yesterday,so I think got some of the anxiety out in advance!I've just had a message got high c(2 points off a b) in assessment a level history sat 3hours before tested positive for covid and at time we assumed was a very nasty bout sinusitis

After extensive talks with D's over hols,we have agreed more GCSEs under his belt is prudent,rather than trying to jump to an a level given he has literally done a couple of months of GCSE coursework to reach levels expected to get a pass in English (only one he's sitting this year,along functional skills maths and English).I've emailed the school and am hopeful they will offer him placement for September.then I just need to convince local authority to pay for it!

Zoo, so sorry to hear lilzoo had such bad tummy cramps, poor thing I really feel for her- it sounds debilitating. How is she now?
Great news about DDs exam results though and really good she managed school. Sounds like a good plan with DS too, hope LA / school will agree to it .

We no longer have daily stress of school which is in many ways a relief but I'm am also increasingly concerned that DD isn't being offered any accessible education, still on role of mainstream grammar and LA still objecting to EOTAS even though no named school on ehcp . I am going to the training leap recommended tonight so hoping that will be useful and informative!

I finally had a call from CAMHS yesterday, DD offered a psychiatrist appointment next month after waiting for nearly 2 years and us having to pay privately for help. I asked about therapy and was basically advised to push harder.
Neurodevelopmental team have taken her off waiting list for tic assessment as they think her tics are functional so they won't offer her an assessment or diagnosis apparently I now have to ask the locality team , feel like I'm being pushed from pillar to post.

Anyway that's my update and I hope you are all enjoying the sunshine 🌞

Zoo I hope school has gone OK for DS and DD2, and DD3 is feeling better. I am glad DS has agreed to the special school, hope they offer a place. So you are ready to appeal if you need to, if you don’t already have a finalised EHCP you should complain and threaten Judicial Review. You don’t want to have to delay matters by needing to get a finalised EHCP so you can appeal.

Runner I hope SOSSEN’s webinar was helpful.

DS1 trialled another medication (Trazodone) to help with his sleep but had to stop it straight away due to side effects.

leap I'm sorry meds didn't help ds1,is sleep a major issue for him (and if so when do YOU get some rest?)
Runnerlil zoos been waiting camhs work best part two years.very frustrating..we have our meet continence team on Friday hopefully disempaction protocol will begin then

Zoo DS1’s sleep is better than it once was, but there’s still a way to go. Melatonin, mirtazapine and risperidone help and we have tried a few others unsuccessfully to help with nighttimes too. We had hoped we could make further improvements with the new medication. We have tried everything we can think of to help.

He still sleeps with us , and doesn’t sleep through the night. He can’t settle on his own, many say leave him but his self injurious behaviour means that isn’t possible. We tried an adapted version of gradual retreat and couldn’t continue because of it. And if he wakes and one of us isn’t there he becomes very distressed. Even when he does sleep he is restless.

I don’t get a huge amount of sleep but enough to cope and we get some overnight respite which is more than most.