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

He has now requested to be seen by the school counsellor so hopefully not too long to wait now. I’m just happy for him to speak to somebody that he can speak to of it helps him relax a bit

Hello friends old and new,
Just reading some of the recent posts - I’m so sorry to hear how difficult it’s been for many of us. My own situation can only be described as a roller coaster of emotions and situations. Taken a toll on my anxiety- health anxiety to be specific. It’s worrying how the pandemic has affected our mh.

Zoo and 1hop, how are you both? xx

I mean 1skip

Lovely to hear from you Viking I think everyone's found pandemic trying in different ways

Dd2 finally had camhs medic app.was due 1115,didn't ring til 430 blaming need for hospital admissions.i wonder how that would've pan out in face to face app?I'd spent all week coax her see a friend and typically it was at 2 pm so have cancelled.they agree tether on ADs(sertraline)script will hopefully be available from doc mid week

How's everyone coping now schools back?

Apologies for going AWOL. Several busy and stressful weeks - EP, OT and SALT reassessments for DS3, private EP assessment for DS2, hospital admissions for DS1&3, paperwork for 2 ARs, DS1's DLA, FIL's funeral, respite problems, numerous appointments... I am exhausted. Today is quieter, so I can finally catch my breath and stress over whether DS2&3 should really be in school. Most previously CEV children, including DS2&3, were removed from the shielding list in the summer due to updated evidence, but that hasn't eased my worry and DS1 remains on the list.

Viking I am sorry to hear you are struggling. It would be nice to be able to get off that roller coaster for a while wouldn't it?

Zoo lovely to hear DD2 is starting ADs. Fingers crossed they help. Experience tells me a F2F appointment would have been equally delayed, cancelled or taken by someone else. We have been the ones delaying others' appointments both at CAMHS and other medical appointments.

Welcome Julius. Push CAMHS for more input. A call a couple of times a month isn't enough if there is no improvement, especially when DD is having additional input privately. You are lucky to be able to mix CAMHS and private care, many CAMHS don't allow it. Is school helping?

Welcome Rose.

Complex how is school? Indies still have to follow their exclusion policy and comply with the Equality Act. They can't just do what they like. If DD is excluded again contact IPSEA or SOSSEN. Does DD have complex needs? If so, there is other support you/she can access. Apologies if your username is unrelated.

skipsounds extremely crazy at yours.arethe boys doing ok after being in hospital?I hope you have managed a few minutes to yourself and are feeling "recharged" enough to crack on

Not going too well here.dd started meds yesterday

Wondering if there's room for me to join?

Parent of several children with various diagnoses but my 7yr old DD is extremely anxious and her MH Is deteriorating fast. She has ASD (PDA profile) and selective mutism, sensory processing difficulties and is in specialist provision that perhaps isnt meeting her needs currently.

Several huge meltdowns recently reaching crisis point threatening serious self harm and harm to me. Now physically violent to herself and me when enraged :(

Camhs virtual appointment on Monday and we are hoping they will offer therapeutic input and potentially anxiety meds given the escalation in level of need / concern. If anyone has any pointers on what to ask for that would be fab as I have no.clue!

decisive there's always room for more here
1skip has become our goto for advice over legal matters,schooling and ehcp plans.im sure if she gets a minute to check in good advice will follow!
My "job" as it were is just checking in with everyone,checking we are all trying to keep our emotional /need batteries up high enough to manage everyone elses stresses.do you have much RL support?do you get time out/any time to yourself to do things for YOU.it can be very isolating as others can be highly judgemental of what are for us huge wins(what do you mean they went into a shop/ate dinner at the table/settled in own bed etc?my X has been fine with that for years)
Sending hugs

Welcome Decisively, sorry you have a need to post here.

Do you live in England? If so, I presume DD has an EHCP given she's in SS. Consider requesting a reassessment of needs. If the current assessments are up to date and comprehensive ask for an early review to get more provision in section F, including therapeutic MH provision and a change of placement if the current placement isn't meeting her needs.

IPSEA have model letters you can use to ask for both a reassessment of needs and early review.

For your CAMHS appointment some questions I would ask are
-What is your name and job role? Always helpful for if you need to ring them or when speaking to other professionals.
-How can I contact you if I have further questions?
-What's the crisis line number?
-When will the next appointment be?
-What therapies are they offering? Pro's/Cons of each. If there is a waiting list how long is it? What is the plan if it doesn't work?

If they do trial meds (and don't be surprised if they don't at first, especially as she is

Gosh how helpful are you guys! Thank you it's been a difficult day (isnt every day?!) And I needed kind words.

To answer some questions we have 0 real life support, I do have 2 long distance amazing best friends who keep me sane via whatsapp. My DH is fantastic but clearly exhausted too. School days are " my" time so when chores/ admin are done I.try and go for a walk however currently it's mostly catch up on sleep

The post above is amazing, I've screenshot it to use at the meeting! She does have an EHCP that I worked really hard on ( rewriting the local authorities vague rubbish) it just seems the school are having difficulty following it

We have melatonin which when she will take is helpful and gives us a chunk of about 6-7hrs it's just unfortunate it seems to be 10pm-4am mostly regardless of tweaking dosing times.

I am so wary of saying this because I know there is judgement around elsewhere, but I really think she needs some low level meds. I simply cannot see given the extensive intervention we are putting in place how she can engage in anything without " the edge off" as it were...

decisive totally get "the edge off" my dd2(16 years)is same.we fought a year to get something from camhs during which time she lost 21/2 stoneand went from struggling with basic function to not able to manage most things which has now triggered depression.
I find a strict 20 minute only nap keeps me upright and gives me precious time for myself but I HAVE to plan it or I never get any time.house,life and everything easily eat into time..
We are here to help hold you up.i don't have RL support which is why I started these threads
Do you have other children?

Skip I too wish fireworks would stop.ds nervous wreck
The school changed timetable AGAIN last night.he now has only one ks4 English a week and one maths despite them knowing we want options for GCSE.no art/geography.emailed to vent my disappointment.got told covid lockdown has riggered need tighten bubbles and no spare staff.still doesn't excuse lack "paper" work they'd promised to send.hes coasting on frankly piss easy stuff...
Also lil zoo been get calls camhs to check in on us.not sure what "Bradley" job title is but last night's call drove me to the edge.he declared lil zoo needs to tell us why won't use loos at school to help break not eat/drink.do you think we've not tried find out since she started school(she's 13ffs)she gets very upset saying doesn't know.itslike it's not something she has thoughts about she just WONT DO IT.add in shesnot good with understanding feelingsshe found whole call very stressful,twice switch off and bury face in lap and also start clenching and wringing hands-pre skin picking stress behaviours.i was all but told be quiet he needs hear her voice when I try help her understand what he was asking.hes alleging to send worksheets on thought processes to my emailand will talk again in 10 days.sbout what?she genuinely has no thoughts on it allso wound up wouldn't eat hot meal id planned and as had no breakfast in order to go to school I caved and gave her a sandwich later
Also she gets highly stressed if feels saying wrong thing or might be judged so he asks she ok and she says fine,no admitting had 3 very low days earlier in week and disputing it as currently feels ok

Decisively there is no judgement on this thread. Many of us have DC on antidepressants or anti-anxiety medication. DS1 is on Mirtazapine and Risperidone.

Have you had social care assessments? A carer's assessment for you and assessments via the Disabled Children's team for DC. If you haven't, earlier in the thread (11/7/20) I posted links to model letters. Or as part of DD's EHCNA - "Not known to the service" is not an acceptable response.

Do you get DLA for DD and your other DC?

Complain if the EHCP isn't being followed, both to the school and LA, who have ultimate responsibility for ensuring provision is delivered. IPSEA have a model letter you can use. If after having complained it still isn't followed threaten the LA with Judicial Review. This usually makes them pay attention, but if it doesn't you can send a pre-action letter - SOSSEN can often help with these. However, JR is only possible if section F is detailed, specific and quantified.

I have also had success asking CAMHS for advice on how to handle specific situations I was struggling with by saying "during a meltdown DS1 often does X what should I do when that happens?" Also, for any appointment I make notes of points I want to mention, otherwise afterwards I remember something I wanted to say.

I would love an afternoon nap. One can dream.

Posted too soon.

Sorry Zoo, I forgot to reply. DS1&3 are fine thank you, DS1 is still on oral treatment antibiotics but much improved and DS3 had a vomiting bug that caused him to become dehydrated. Running fluid through his PEG wasn't helping, just causing him to vomit more, so we went in for IV fluids.

If a professional doesn't introduce themselves I always ask their name and role. Otherwise, how do know whether they are a MH practitioner or psychiatrist or one of the many grades inbetween? Sometimes you can see their ID badge, but I still ask because they should be saying. I do the same in hospitals, although it's slightly easier due to many wearing uniform.

The same for phone calls to hospital admin/secretaries, the LA, Social Care etc. Once someone has told you their full name it focuses their mind on helping you/giving accurate information/being less obstructive because they may be held accountable.

It also means you can use their name - Thank you Rose. You've been very helpful Rose. Rose, X hasn't happened when I was assured it would. It builds relationship and they are more likely to help you do what you want them to. They are also likely to remember you next time you contact them especially if you can use their name again. The follow up email I always send after verbal communication with LA or Social Care can also be precise.

I always introduce myself too. I am not "mum" to anyone but DC. I don't mind "1skip" or "Mrs 2back", but I am not their mum.

Bradley doesn't sound helpful. When stressed DS1&3 won't appear on screen. They'll be off camera and speak or if really stressed DS3 will mouth answers or pass notes. DS1 will look pleadingly at me or try to end the call - although I'm wise to that one now. They are slightly younger than your DD3 and DS1 has SM but, when necessary, I do speak for them at both F2F and virtual appts.

Sorry for the long waffly post.

Not waffly at all lovely

Anyone got experience of sertraline side effects?dd2 is on day 5(yesterday) and is very low/unmotivated the most anxious she's ever been and instantly angered to levels of rage we've never seen before....

stilllivinginazoo hi long time lurker who rarely posts. I have 2 dc with mh problems. Dc1 was given Sertraline when he turned 17, he’s 20 now. He was on it for around a year and I genuinely think it ruined his life and put him on a path he’ll unlikely ever recover from. I don’t want to scare you and everyone reacts differently but, it’s truly the sorriest thing I have ever agreed to. At first, he had no side effects apart from a bit of insomnia and seemed to respond really well, that was on a dose of 50mg. Under duress, I agreed to let him increase the dose to 100mg and things went rapidly downhill, thoughts of suicide and the start of many missed periods of school, he then began to make himself vomit. 1 Psych left and another took over who increased the dose again, he was awake all night, refused school & exams, began bingeing and vomiting every night and started to self harm. I managed to get a private therapist who resolved the vomiting somehow. Ds then decided to go cold turkey from a dose of 150mg to nothing, he refused to taper down and was in bed for 3 weeks barely able to speak or lift his head. He vowed never to take it again as he felt emotionless and could feel nothing. He ended up dropping out of year 13 and was referred to adult services, we’re still waiting for an autism assessment 18 months later, suspected PDA. He tried 4 other drugs under adult services, none worked, he was on 3 different drugs at one point and was contemplating jumping from a bridge. After a year of adult services, 2 more psychs & 3 support workers, who were really unreliable, he refused to interact any more and got dismissed from the service and again stopped taking all meds. He repeated Y13 and got a couple of A Levels but the pandemic has hit him hard and he’s really struggling again, doing very little. He has extreme anxiety but none of the anxiety meds have touched it and all the side effects have been awful. As far as I’m aware the only med approved for under 18s with any proof of working, for depression is fluxotene but ds was never offered this. I’m not sure why. As bad as he is now, he was far worse each time he was given medication. I’m not sure what the solution will be long term as he won’t engage with anything now. I honestly believe, he came out of CAHMS 10 times worse than he went in, they were truly dreadful in our area.
I hope your dd improves, people do say it takes time but Sertraline was the only med that actually worked straight away for ds initially. I still think I made a huge mistake allowing him to have it and if I could go back in time, I’d refuse it. Although ds begged me for the medication and pleaded for my approval, he now blames me for allowing him to take it :(

balloons what a heart wrenching story my love.i do hope you have someone to turn to in all of this in real life
The risks of suicidal thoughts is significant,esp in boys,on many of the ssri drugs.that I do know, and hope you were made aware of before he started taking them.
As parents we can use hindsight as a stick to beat ourselves with forever more.please remember when you were desperate to help your son you took advice from proffesional sources and judged AT THAT TIME medication was the only option.
We can only ever do what we believe is the best in the right now.none of us can predict the future.we cannot change the choices we made.
I truly hope you can find the support you need for your son(I've long suspected dd2 has ASD,but as functions "adequately" no one will support the need for assessment despite her not being able to cope with sudden change and her exhaustion from dealing with groups of people and adjusting to cope with situations that are very uncomfortable for her)
I cannot make your lives return to where they were,but the thread is here for you should you wish to offload or seek companionship at any point of others doing there best to care for the ones they love

Dear stilllivinginazoo thank you for your lovely message and kind supportive words. My other dc also attempted suicide on the way to school one day, which shocked us to the core. I think he is likely autistic but high functioning and will not engage with anyone or anything, his school have managed some support but he won’t engage otherwise.This happened in the middle of my older son’s worst times and other illness in the family. The day dc1 had his appointment with adult services, dc2 was in hospital & he had to attend his appointment alone, within half an hour of seeing him they’d referred him for the autism assessment (the one we’re still waiting for), they promised to help him but repeatedly said they couldn’t really offer anything until after the assessment as they weren’t sure if he was autistic or not. At first I had a lot of hope that he’d finally get help but the service offered deteriorated due to budget cuts etc. I imagine, it’s even worse now. The psychiatrist did say I could call them and get him rereferred back to the service if he got worse, but without agreement, it’s unlikely they can do anything.
I think a lot depends on your local services and GP as to what service you receive. Our GPS were brilliant but all retired and now are quite poor. Our local CAHMS was overwhelmed and the staff kept leaving, their underlying policy seemed to be prescribe meds and increase them if they don’t work.

It took 2 years to get D's thru asd assessment to diagnosis due to a backlogs.g.ps can do little for MH in under 18s except offer very short term tranquilisers or propranolol for anxiety.everything is has to be signposted thru CAMHS.their hands are tied
My camhs is not particularly useful either.we always feel not listened to and talked at.i agree lack funding for mental health tends to encourage cheapest option- meds(although in under 18s I'm told this should be in conjunction with talking therapies)
Adult mental health follows same guidelines,but in reality budget tends to just be a drug prescription service
I'm currently wading thru self help books as I'm determined to try and engage dd2 with some ideas having had years experience with depression myself I have decent knowledge of self-care steps etc,my anxiety techniques aren't fully polished and with her thought processes it's a learning curve but one thing i have on my side is her dogged determination not to "surrender" and her capacity to push herself.
I've no idea if in a year's time where we will be,but I know(like you) I won't give up and will always do my best to support my children

That’s great that both yourself and your daughter are determined to beat it. She’s very lucky to have you!
My son really did try everything they suggested, he eventually got CBT from CAHMS alongside the Sertraline but it didn’t work for him and the week before his 18th birthday, they discharged him, in a worse state than he was before. They didn’t listen at all. The psychologist who was giving the CBT actually told me, in front of my son, to give him 3 meals a day and weigh him, if I was concerned over his eating. The psychiatrist referred him to the wrong Adult Services location and I had to repeatedly follow up, my GP spent hours trying to figure out what was going on and if I phoned CAHMS they said he was on holiday. Eventually, I called and said I’d be making a complaint with PALS that day if the Adult referral didn’t go through & the psychiatrist called me back, offered to send a team to the house (this is when ds was withdrawing from the Sertraline, unchecked) and offered me a prescription for diazepam. To be honest, I found the Reception staff far more caring and helpful than any of the professionals I encountered.
Our whole experience was awful with both services in the end. When my son refused to engage any longer, the psychiatrist finally admitted he needed talking therapy, not meds, which is what I’d been asking for for a whole year but I was told in the beginning they were only there to prescribe medication. My son, although an adult gave permission for me to be in all of his appointments.
Realistically, you have to be prepared to help yourself & do your own research. I have wanted to give up many times but nobody else cares as much as a parent & your dcs will know they can count on you. I’m hoping one day my dcs will realise this and come out the other side x

Things often get worse before they get better Zoo. DS tried a few antidepressants before Mirtazapine, some had side effects, some didn't. How is DD2 this evening?

Welcome Balloons. I am sorry to hear of your DS' struggles. MH support is too much of a postcode lottery, it shouldn't be that way.

You shouldn't blame yourself, it is not your fault. You couldn't foresee DS' side effects. For all you knew ADs could have been the 'thing' that transformed his wellbeing. Not to mention if DS was adamant about trying Sertraline, unless he lacked capacity, there was little you could do to stop him. He is taking it out on you now because he knows you love him unconditionally, whereas doing the same to others would push them away.

I too don't know why DS wasn't offered fluoxetine, poor practice. Unless contraindicated fluoxetine should be the first line medication in children and adolescents 8+. Other antidepressants are often used for under 18s who are unresponsive to other treatments, especially Sertraline and Citalopram, which are both supported by evidence and are within NICE guidelines. Despite not being licensed for depression some are licensed for children/teens for other conditions e.g. OCD. I think the difference between fluoxetine and others is it is only fluoxetine where there is substantial research showing the benefits outweigh the risks for depression.

I completely agree, no one will fight for DC like parents.

skip we were offered sertraline as first step.they also wanted ds to take it but he refused(and given how bad DD is at mo he would be etc have coped with the side effects,)
DD is still very low,I've had 6 confrontation today.all.over nothing.her anxiety was bad before but it's completely out of control now,as is her reflux.she fed up of feeling so sick in the mornings and at night

day WOW.Thats AMAZING about the job!you must be so proud of him!!
It's wonderful to hear he's actually up all day now,and is thinking about returning to school.
Sorry about your DD.i hope she can get the support she needs
And most of all,how are YOU?

Hang in there Zoo. Sertraline can take 4-6 weeks to start working fully. How much is she on? She may need a dose increase after being on it a while. And is she receiving therapy alongside?

DS1 was 6 when he tried Sertraline. He started on 25mg, went to 50mg and then 75mg with no side effects, but neither any benefits. If I didn't know better I would have wondered if he was taking them. Due to his weight and age that was the max so he tapered down that and stepped up Citalopram, which was very quickly stopped due to deranged bloods. Being older DD2 should be able to go to a higher dose if necessary.

This morning I received an email from the LA I'm not sure I was supposed to be copied in to. I am MN-ing whilst I calm down and plan our next move.