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

Welcome elltee, I hope the CAMHS support helps. A month is still very early and DD may not have brilliant insight into her difficulties and progress. DS1 attended a CAMHS unit as a day patient for over 2 years because there was nowhere for him to move on to despite it being longer than they normally keep them. To begin with he didn’t make much progress and that he did make was less visible. Have you had a carer’s assessment and DD an assessment via the disabled children’s team? Do you get DLA for DD? Does she have an EHCP?

Runnerduck34 does DD need OT provision embedded throughout the day? If not, the LA could commission separate independent sessions, maybe via a personal budget. Whether the needs are in the EHCP or not DD she has those needs so it makes me think it is more about the provision required to meet those needs.

MmeMeursault getting support for yourself is a good idea. Have you looked at the Junior Marsipan criteria? You need HR, bp and bloods doing as well as height and weight. Are the school providing any support? As well as a carer’s assessment and assessments for DD via the disabled children’s team has your 5y/o had an assessment via the disabled children’s team? If you don’t get DLA it is well worth applying, for your 5y/o too.

Hi all. I've disappeared from the thread, so apologies, - it's been stressful.

So we had DD's EHCNA refused, and we accepted mediation. LA cancelled the mediation appointment on the morning of the meeting, saying that they had decided to assess after all. I had a fairly emotional conversation with the lead SEND officer, who was arrogant and fairly unhelpful.

We are waiting to be assigned a SEND officer, and I assume an EP appointment (god knows how long that will take). I have lined up a private psychiatrist appointment, and should also get a private psychology appointment in the next 4 weeks - I am asking both for a full written report for the EHCP assessment. I think she will probably have another couple of diagnoses to add to the list - GADS and ADD-inattentive at least.

DD has decided that she wants to go to a special school for A-levels from Sept (whether her anxiety will allow this is another question). There are only 3 in the country - she wants to board, although I think we would 'just' all move close to the school for the first year at least (both WFH, only 1 DC).

Our argument is that mainstream education is not suitable - as an autistic child it had a huge negative impact on DD's mental health. This resulted in a suicide attempt last year. So it is not safe for her to go back into any mainstream environment. She needs classes of

Hello Bubbles, it is good to see you. The EHCNA process is governed by statutory timescales. IPSEA page. Anyone approached for advice must respond within 6 weeks. If the LA EP cannot assess within the timescale the LA should commission an independent assessment.

Yes, an OT assessment would help, both from a sensory point of view and also a mental health and independence aspect.

As part of the EHCNA the LA must seek advice from:
a) the child’s parent or the young person;
b) educational advice (usually from the head teacher or principal);
c) medical advice and information from a health care professional;
d) psychological advice and information from an educational psychologist;
e) advice and information in relation to social care;
f) advice and information from any other person the local authority thinks appropriate;
g) where the child or young person is in or beyond year 9, advice and information in relation to provision to assist the child or young person in preparation for adulthood and independent living; and
h) advice and information from any person the child’s parent or young person reasonably requests that the local authority seek advice from.

H can include psychiatrist, clinical psychologist, SALT, OT.

Do you mean there are only 3 SS DD would consider? As there are more than 3 who offer A levels. Be aware if you move LA the new LA will review and potentially amend, reassess or cease to maintain the EHCP.


If you are wanting residential SS I suspect you will be heading towards tribunal, therefore I would be provisionally looking at booking in independent EP, SALT and OT assessments as they are booking well in advance at the moment. You don’t want them too soon either though otherwise SENDIST will consider them out of date. IPSEA used to advise reports over 2 years old were out of date but more recently SENDIST have considered ones much younger out of date.

If the LA are going to issue an EHCP in order to meet the 20 week deadline they should issue a draft by week 14. If they aren’t going to issue they must inform you by week 16.

Hi Bubbles
Just to let you know I am 14 months into the ehcp process and have submitted 2nd tribunal request.
Line all of your independent reports up and ensure the school work with you.

Dd did well this week and managed afternoons Mon to Thursday but then there was some girl drama on Thursday which really upset her and has sent her into major depressive state again. It's so hard...

tiktok the drama girls have in their lives is HARD ...D's never has such high dramas as the girls do.sending hugs
Bubbles lovely to hear from you.

Seems constantly manic here
DS was off wed-fri dizzy spells g.p saw him Friday and all stats were ok,thinks just sudden big growth spurt and body and brain need catch up eat other.offered bloods,but D's hates tests.ive made clear any more dizzy spells in school,he's to have them
Dd2 has a camhs review on thursday.sges 18 next month and has had no input in around 5months.shes getting worse by the day and recognises needs help and is going to ask try meds again
Lil zoo continues restrict food and fluid on school days and having at least one day a week of with acute pain/feeling like needs loo all the time(continence app 29 th march)

Thanks zoo. We picked up the new s ript yesterday but she is refusing to take as it will take time to kick in, wo what's the point :(

We are back at hospital due to risk level. Being admitted for assessment in the morning. Not quite sure what is meant to break this cycle...

Oh tiktok I'm so sorry lovely.no answers,but big hugs.please keep letting out your thought here.i can't help practically,but there's always support and someone to listen.xx

I am sorry to hear that Tiktokcat. CAMHS need to offer more intensive support.

Zoo I hope DS’s dizziness has eased and DD2’s review is helpful.

Leap* he's saying he's ok,but that's also because if ongoing he has to have blood test doesn't want...
Ddhas decided needs try ADs again she's got soo bad it's affecting everything from food to sleep to everyday life.a combo health anxiety,general panic and she's Extreme stressed all the.time
I'm hoping they will at least start her off before moving to adult services she's 18 next month

If CAMHS don’t start them the GP will be able to once DD’s 18.

For blood tests and injections have you tried a buzzy? Some children for it helps either instead of Emla cream or Ametop gel or as well as.

What is that?? He has the gel and the spray

These. Hospitals use them, but you can buy one. It vibrates and helps some cope with the needle by reducing/blocking the pain signals. It has scientific evidence and trials behind it.

We have had email cream and freezing spray for blood tests before. Both helpful.

Dd seems calmer now we are on the ward. I wonder if it is relief tbh.
I don't know what more intensive support would look like. I am worried camhs will just argue she isn't engaging by refusing meds

Tiktok more intensive support could look like more appointments, home visits, day patient care, referral onwards to a more specialist team, referral for help with ARFID, holding a CETR.

We find Ametop gel works better than Emla cream for DS’s.

Really helpful. Thank you 1leap.

She just told me her period started today. Last time we were in hospital she was on period. I am now thinking hormones may be having extreme impact

tiktok how's things today?I heard of a few cases where hormones really impact mental health,so deffo worth pointing out the correlation

Dd is home now.
Mental health nurse managed to get dd to agree to half dose of ads so I have to get new prescription later.
She also wants me to book appointment with gp to discuss periods as she agrees periods could be significant factor.
She thinks dd is absorbing others emotions too much so suggested strategies to help and talked through some tiger things.
She acknowledged that I am the best support for dd, rather than her or camhs etc given resources. :/

I have booked a meeting with school in a few weeks so we will take it from there I guess.

tiktok I'm not sure if I'd be flattered or disheartened I'm best source of support comment
Hope today's a quiet one for you

Hi all
Wow what a few days we've had! Fake accounts of dd have appeared online and the constant trolling is relentless!
Tonight she refused her meds but eventually relented and took them, I've tried to persuade her to have a break from social media but she flat out refuses.
My girl is broken and I am broken

Hi @cantthinkofabetterusername
I am so so sorry, no wonder you both feel broken, social media can be a nightmare, Im not tech savvy enough to offer any practical advice but can imagine the toll this would take on anyone let alone a vulnerable teen. Easy for us to say step away but I know my DDs wouldnt be able to, I hope her friends are there for her, Im not sure how you can get things taken down but I would be investigating and depending on content is it worth contacting the police for advice? I truly hope this blows over soon.

@TikTokCat I think Id be heartened by being the best source of support but sometimes you want to be a mum and have the professionals take the strain, I hope things are a bit better now DD is home.

Ive had a few tears today too, it sounds silly in comparison to what so many of you are going through but the specialist school that offered DD outreach after Easter has withdrawn its offer, I fought so hard for this through appeal and it was so bloody difficult to find any provision to have this taken away is such a blow, I dont know where we go from here, the whole process has been a stressful nightmare from start to finish. We were still appealing for content of EHCP , the LA was dragging its heals with working document, the hearing was postponed from February to March and last week was postponed again until June (lack of court time apparently) Wish Id just conceded last month when LA conceded to placement, but maybe result would be the same. SS said they have concerns over recommendations in her in OT report - sensory integration therapy , however we were arranging the OT sessions ourselves so dont understand why that was an issue, particularly as it was outreach provision. They also said they dont have the staff to do outreach , the HT that agreed the outreach is leaving so I think the real reason is the change of leadership. It was a private school so basically they can do what they want.
Feeling very deflated by it all.
On a positive note DD is doing rather well at the moment-she had even planned her desk for outreach-so was hard to tell her its not happening, she is engaging so much more with us, watched a film with me last night, chatting , smiling, showering, making eye contact, I think not being in school and the new medication has really helped, she said tonight she wants to go back to her keyboard lessons-she hasnt been for 2 years, the Art group she attends finishes this weekend, they had funding for 8 weeks , shes managed to go to all sessions so its a real shame that has ended as she definitely needs something. I dont know what to do, do I attempt to send her back to her mainstream grammar shes still on the roll of?? Im not sure that will end well, shes in year 10 and has pretty much missed 2 years of schooling, I suppose I will, have to beg, fight and cajole the LA for some sort of provision for her, but theyve manged to drag it out 14 months already and DD is 15 next month, I think the LA will prefer to delay for as long as possible to avoid providing DD with an accessible education. Do I /Can I continue to appeal provision content the EHCP but leave section I blank as we cant find a school (and nor can LA) , do I try EOTAS again but last EOTAS provider I found wouldnt support us at appeal as they said cant be seen to be in conflict with LA, and LA wouldnt agree to EOTAS. sorry Im rambling .... just venting really

Oh runner I'm so sorry.not silly to have shed tears.id be crushed after how hard you have fought for this place
I'm hoping leap will be able to offer advice on what to do next as she's our resident expert
How amazing DD has done the art group and has taken so many steps forward with things.i so love to hear the wins and gains here💖

Can't I'm not tech savvy enough to offer practical advice,but can't sympathize.dd has issues with a "friend" who was bullying her online- sending vile messages on insta and splitting up her friendship group/turning everyone bar one against her.was horrific.is it across all media or just one?DD did give up insta for a few weeks whilst things settled after the fallout.thus was 2 years ago and she still tries to limit time on SM a bit with locks,and deleted tiktok to stop with doomscrolling,but I know lil zoo would never consider these options,so appreciate its not necessary everyone's answer

Dd2has camhs review today.shes agreed to try meds and hoping they'll agree

Thank you zoo, this group offers such support I'm so grateful I've found it.
Good luck for CAMHS review today, I'll keep my fingers crossed for you

Runner - that's devastating. I would be shedding a tear!

Zoo good luck with the CAMHS review.

tiktok whilst it is good CAMHS recognise you are a protective factor, it isn’t good enough that they are using that as a way to avoid providing DD with more support. She needs specialist MH intervention. The timings don’t fit for DD, but to see how hormones can worsen MH have you looked at PMDD?

cantthinkofabetterusername that’s horrific.

Runnerduck34 It’s not silly, the whole system is relentlessly stressful. Wonderful DD is doing so much better.

I don’t think conceding would have changed anything, and in my opinion going back to MS isn’t an option. DD wouldn’t cope. You can continue appealing B&F, SENDIST may not accept you withdrawing anyway if they think not enough progress has been made. Leaving section I blank would be EOTAS. EOTAS doesn’t need to be via a provider the LA like to use. Your LA is notorious for wanting to pay companies to deliver packages, but it doesn’t need to be that way. Keyboard lessons and another art group could be part of the package. I would appeal for an EOTAS package, and in the meantime email the Director of Children’s Services threatening JR for provision under s.19 of the Education Act 1996. If you have already done this or it doesn’t work contact SOSSEN for help with a pre-action letter.

Do the OT recommendations need embedding throughout the day (which they may say they don’t not have the expertise or staff to do) or does it only cover set sessions? If the latter can the school be persuaded if the OT is specifically mentioned as something the LA will deliver separately to the school placement i.e. they won’t be responsible for ensuring it is provided. You don’t need to pay for OT sessions if it is in F the LA must fund it.