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

@Stilllivinginazoo thank you. Sorry to hear you have so many challenges too.

I do have some support in real life, in that DH and I talk freely about it. Although in reality, I do the vast majority of the practical and emotional labour and he likes to pretend things aren’t happening. I’m a fixer, he’s a denier. I have a friend undergoing similar issues with her DD so we do talk.

I have been getting quite angry about the whole situation and I need to get a handle on it. Neither of them will do anything to help themselves and it’s almost as if mental health issues are an identity.

I have DS’ beta blockers prescription anyway so hopefully they will help. DD has always had her challenges but it has come out of left field with DS who was always a genuine ray of sunshine.

@1leapforward2back I will check out mindjam, that sounds right up his street.

CAMHs are trying to stop Ds setraline. Some rubbish about possible interaction with adhd meds (he has been on both for years) strangely me saying I wanted it on record I didn’t agree soon made her change her mind.

I am sure we shouldn’t both come out of these appointments so much more anxious and angry than we go in. Ds spent the whole time curled in a ball in a corner and I wish I could have joined him!

Welcome Barry. You’re not failing. Are the school offering any support?

Tiktokcat I hope DD is feeling better.

Muddling If you haven’t heard of MindJam have you heard of Spectrum gaming? Not therapy related, but an online gaming community aimed at autistic teens.

Sirzy we have appointments where we feel worse afterwards too. Sounds like an excuse. Have you checked whether there is an interaction on the BNF? If there isn’t you can then point this out. Even if there is an interaction how can CAMHS think it is appropriate to withdraw medication and not replace it when DS is curled up in the corner of the room.

Yes I looked it up in the BNF as soon as we got home and couldn’t find anything!

welcome @MumofoneASD , DD also received an ASC diagnosis a few months ago at 14, you are making sense feel free to offload here, this thread has lots of sympathy as well as good advice.

welcome @BarryTheChopper- sounds like things are really tough, what you say resonates, I have an older DD who thankfully has now recovered from anorexia and depression was a very bumpy ride for a couple of years and now youngest DD who has anxiety, school refusal and recently diagnosed with ASC. I do sometimes feel a bit sad when friends talk about everyday things their DC do. But Oldest DD is now well and her life has completely turned around so I know they is light at the end of the tunnel. But god its tough getting there!

@ sirzy appointments can easily make you feel shell shocked , so pleased you stood your ground!!

Thank you leap for recommendations, how is taxi service zoo? It sounds just awful!! Hope its been better today.

Today we visited the new school that LA have named , HT very open , he says as DD is half way through year 10 , very anxious but academic its not ideal for her and will retract offer, he is filling school from year 7 so atm no year 10s and no outreach or even KS4. Will wait and see if he actually does it, I think he's been under pressure from LA. It all seems very political. LA responded to tribunal to say why they shouldnt be struck off, was an oversight they didnt supply all the information requested( requested twice by tribunal orders!!) and they need more time to put together info on their named school. Still no attendance form , honestly I think they are just sticking two fingers up at as all, I naively thought they would have to comply with tribunal , after failing to meet any statutory deadlines during EHCNA process, but actually they can still do what they want when they want whilst we run around like headless chickens trying to get everything in place and are highly stressed, more importantly its wasted a year of DDs education

Leap DD2 thought Mindjam sounded good as did we - she has been added to waiting list. Hadn't heard of Spectrum Gaming, will look thank you (having difficulty accessing the site at the moment - not sure if it's me or them). DD2 does not have ASC diagnosis though? (Referral done). I know she would consider herself to be breaking rules if she joined without a diagnosis!)

Muddling Spectrum Gaming allows you to join if you are awaiting an assessment. From your posts I would be surprised if DD wasn’t diagnosed following the assessment.

Runner have you sent a follow up email to the LA’s choice of school? Thanking them for their time and summarising what was said. Nothing will change while LAs are allowed to ride roughshod over the law without retribution.

Hi all, I have been reading but not posting recently - DD is showing some small signs of improvement, but I think I feel like I don't want to write about it in case it jinxes it!
Hello to the new people - I'm sure you will find loads of support here and an understanding space when you need it.
I had a quick question for Leap - we sent in an EHCNA request in November. Monday was 7 weeks since it was sent in (I gave them a week's grace for Xmas) and no response, so I sent the IPSEA template letter of complaint. I had a response that it had been forwarded to the SEND dept, but nothing since. How long should I leave it, and what are next steps to get them to respond? Thanks!!

Hello bubbles, so pleased you are seeing an improvement.

Leap - exactly my thoughts I naively thought LA would get its act together and comply with tribunal and their orders but instead they continue to follow their own pace with no consequences.
They responded to say that not complying fully with previous orders was an oversight and asked for more time.
The tribunal have now vacated the hearing , with no new date set to allow LA more time, so annoyed- I thought the end was in sight!
Yes did follow up with email and HT confirmed back to us he can't meet needs . LA are hopefully now considering our preferred choice now their's has been ruled out. I am losing the will.......

Bubbles Christmas is not an exception. Did you send the letter to the Director of Children’s services? If not, forward it to them informing them the lack of response leaves you with no option but to proceed with Judicial Review proceedings because they have breached the statutory timescales and are frustrating your right of appeal. If you don’t get a swift reply contact SOSSEN for help with a pre-action letter. Pre-action letters nearly always work. You will have to pay for the pre-action letter (SOSSEN are reasonably priced), but if the pre-action letter doesn’t work and you move forward with proceedings DD will be eligible for Legal Aid in her own right.

Runner how frustrating.

It has been an exhausting day with DS1.

Thanks all for the welcome. I have been re-reading through a lot of the posts with reference to CAHMS and various other resources. It’s early days for us but they are being ok so far. Although I’m not sure it’s them I’m dealing with, the email signature says education mental health practitioner.

@Runnerduck34 there are certainly a lot of parallels there, I’m glad things have turned around for your oldest DD and wishing your younger one well.

We actually had a good day yesterday, we went out to dinner for DDs birthday and she ate a decent amount and had a cocktail. DS came and seemed to be ok, (with his meds in my bag) but he is generally motivated by food!

Barry EMHPs are part of the CAMHS team. I wouldn’t have thought an EMHP was appropriate. They generally work with those with mild to moderate MH difficulties delivering low intensity interventions, normally CBT based. I would have thought DS needs more sustained intervention. As DS has been prescribed medication I presume he has seen a psychiatrist?

Have you applied for DLA for DS? And does DD get PIP?

Wow @1leapforward2back none of that. We haven’t seen a psychiatrist no, we didn’t for DD either and she is on fluoxetine, has been for about 6 months. They said they could prescribe for her as she was under CAHMS.

There has been no mention of anything stronger therapy wise for DS. I have regular chats with the school co-ordinator.

And no to the claims, I had no idea I could. It’s all been pretty sudden really, within the last 12 months for DD, 6 ish for DS.

Welcome mumofone and Barrythechopper

Thanks Runner

Dd is still very tired. I am hoping she improves so she can go to school next week. She has lost 2kg since start of year so we are back to square 1 weight wise. We are on 45% attendance for this term. Mediation certificate received so we can now submit appeal over the content of the draft ehcp.

Barry It is best practice for children and young people to be assessed by a psychiatrist before being prescribed medication, and medication should always be alongside therapy not instead of. DD is a little different as she is 18.

Do apply for DLA for DS and PIP for DD. If DD cannot manage a claim herself you can become her appointee. The Cerebra guide is helpful for completing DLA forms. The benefit and work website and this guide are helpful for PIP.

Have you applied for an EHCNA for DS, and potentially DD depending on her needs?

Tiktokcat I can’t believe no one is concerned about DD’s weight and providing you with more support.

Leap - I really don't have a clue if DD2 will be diagnosed with ASD or not. When I read diagnostic criteria I'm unsure. I wouldn't have said she displayed restrictive or repetitive behaviours behaviours when younger. She wasn't keen to move from purée to food with lumps in and was quite fussy about food generally. On the late side with potty training but got there before school started. She's had a love of computer gaming since she first discovered it (and she has a lot of knowledge) but she doesn't talk about it particularly (or not to us). She had friends at primary and at the start of secondary but always claimed it was by chance and down to them not her. She would happily play with anyone if they shared her interest in gaming. Interestingly when I re-read nursery report from when she was 2 1/2 - 3 1/2 they say that she tended to play alongside the other children rather than with them and that she cried to get adults to intervene. She never showed much interest or empathy towards others when younger (a bit better now). Always very strong willed and very tantrumous if thwarted. Never keen to stick with clubs like brownies dance etc and sometimes required proof from me that it was the correct day/time/uniform before going in!

She wasn't ever particularly keen to go to school as she always found it boring and a waste of her time (when she could have been gaming!) But academically she was always towards the top of her peer group.

Anxiety and friendship difficulties blew up at age 14 and now she's very withdrawn, eye contact becomes less as she's more uncomfortable, avoids social contact (finds it exhausting and anxiety inducing), has no friends, rarely leaves the house, seeks comfort from blankets, lights, sounds, certain foods, says she finds conversations very challenging. Seems very young for her age.

Based on now I think she might be but no one suspected when she was younger (including us) and it is a concern to me that diagnosis might be missed under ADOS.

In a slightly surreal moment this week DD2 brought a blanket in the car and wore it over her head while I drove her to her CAMHS appointment. He reason was so that she wouldn't know how near we were as she feels increasingly anxious the nearer we get. I suggested shutting her eyes would have had the same effect and have been a bit less stuffy but she preferred her way! We may have got a few glances.

Thanks for the welcome. DS is getting more and more anxious. We saw his psychologist yesterday and she is going to speak to the psychiatrist she works with today to see if they will see him. He just is in such a state with awful intrusive thoughts.
We are not sending him into school this week - on the psychologist's recommendation as it is just another stressor.
I wish I had a magic wand.

Thanks 1leap. I contacted the edc consultant who discharged us asking for advice given her appetite seems to have decreased. She suggested I ask for support with eating if dd was hospitalised over something else last week but she wasn't. She had a week off school. Back yesterday and did a full day but is now so exhausted I can't get her up.

I'm not sure where to go tbh.

She is having independent assessments with salt, ot, and cp in the next 2 weeks. Her biggest problem currently seems to be exhaustion...

@Mumofoneasd has your Ds tried propranolol? It can really help with anxiety and can be prescribed by the Gp. My Ds can take up to 3 a day when needed. He also suffered from severe anxiety & depression which initiated in lockdown. It took a very thorough psychiatrist to discover an underlying cause - ADHD precipitating all this. An antidepressant also helps minimally, but took some time to work. But he is now back at school and has attended every day this far ( a little late some days). He's still in recovery but he's so much better than 3 months ago. I'm just saying this to say there is hope and your son will get better with the right treatment.

@fferny1 interested to hear about propranolol, DD was prescribed setraline by private psychiatrist it only made a limited difference, so we are now just about to try florexotine . Our GP couldnt /wouldnt help just said need to be seen by CAMHS but we struggle to access any help from CAMHS let alone seeing a psychiatrist

@MumofoneASD, it sounds so difficult for DS , as a mum you feel so helpless when your child goes through something like this, Im glad you have professional support, I hope they come up with the right support and treatment.

@MuddlingThroughWithoutAClue DD was diagnosed with ASC at 14, we had no inkling it wasnt until puberty hit things went haywire.
Looking back she was always anxious, treble checked everything, could be a bit inflexible but she was sociable and happy and honestly we had no idea of any major issue until she started to barricade herself in her room,
We saw relatives recently who suggested we should get a second opinion as they dont believe DD does have ASC. It takes a while to adjust to the idea but I know she does have ASC, I think girls often present differently and are excellent at masking (and so are some boys tbf)

@TikTokCat exhaustion is a big thing for DD , any small outing or appointment can completely drain her and she needs to spend the next day or two or three quietly with no expectations . When her anxiety is really high she sleeps a lot, of course if they dont eat properly that will only make it worse.

Hang in there everyone

Muddling I think DD presents quite typically of high functioning girls.

MumofoneASD if DS cannot attend school the LA have a statutory duty to provide alternative education. In addition to this have you applied for an EHCP?

Fferny whether GPs will prescribe any medication for MH to children and young people varies CCG to CCG and even within an area depends on the individual GP. Many won’t without them being initiated by CAMHS, or if they will agree to take over prescribing, a private psychiatrist.

Tiktokcat personally, I would be taking DD to A&E. I know she will find that very difficult, but her weight is dangerously low and she wont be able to make a rational decision. There comes a point that regardless of the cause AN, ARFID, medical reasons the low weight is physically dangerous, I imagine DD is there, and her exhaustion is symptomatic of that. Alongside this I would push for a referral to Maudsley’s ARFID clinic.

@runnerduck Propranolol is a beta blocker that just reduces the physical symptoms of anxiety from an adrenaline surge like shakiness, racing heart, hot sweats etc. I asked DS's Psychiatrist to prescribe it for Ds's school return, as he was very nervous. It really helped him as I put 3 tablets in his bag and he could take one if needed. It gave him a measure of control over things. I used to have it when I was young for stressful situations - exams etc. He only used a few tablets I believe.
I'm assuming Gps would be able to prescribe these, as they seemed quite commonly used from what my pharmacist asked me. But I do know in my area GPS can't prescribe antidepressants to the under 18's. However ADHD drugs can be prescribed via a care share agreement with an ADHD assessor.

Many GPs won’t prescribe any medication for mental health conditions for children and young people without them being initiated by CAMHS, or a private psychiatrist if the GP is willing to taken over the prescriptions. Especially for propranolol as it isn’t licensed for use in anxiety in children and young people.

@Runnerduck my dd2 also started having issues at 14 & we blamed it on a late puberty. She went from being very bright, sporty & popular to being depressed, completely changing her friendship group & dropping right down in the class. It took two other brothers to be diagnosed with ADHD to discover she has it too - the inattentive form - only diagnosed last week at 17. But it's so subtle in girls and she masks so well. Plus as she says she just thought at the time she was thick & very slow at things ( it took 6 hours to write a GCSE essay but she achieved a level 6 sats in juniors). It's completely unrecognised by her teachers as she hands work in in time but spends half the night doing it. Her Art teacher said to her there's no way you have ADHD only last week - her hyperfocus on detail is a major advantage here.

@Runnerduck34dd had propranolol prescribed by g.p.it seemed like the answer to everything til it wasn't.she started getting breathless and blue fingernails which,whilst rare,is not good and had stop using them
Also be aware not suitable for asthmatics