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

skip judging by your tone it wasn't complimentarily letter...dd2 on 25mg currently.now1weel in.we are ment be attending chilled anxiety group which is now via zoom and due to volume attending is a nightmare.she hates it,finding it exhausting and highly stressful.we couldn't attend last week dye to internet issues.j email one leaders I'm concerned due to her aggressive nature and lack of patience it will be better she's not on this week.theg disagree.i can guarantee it will end in tears and she will then be angry and down on herself for not complying and letting others down

I think it was supposed to be an internal email that someone has accidentally copied us in to. When they realise we know the sender is likely to be in trouble because I can see the whole email chain.

DS1's bespoke package is costing too much money. I already knew that, they remind me how unusual and expensive his package is every time I communicate with them. Too much provision is in section F where with other pupils it is in G or H, i.e. we won't allow them to do as they wish and pass the buck.

Reading between the lines they plan to name the local generic secondary SS. They plan on achieving this by removing needs and provision from his EHCP so that it looks like they can meet his needs. There's no way they would win a tribunal to place DS there. It's not even a SEMH school, let alone the right one.

Now I know the LA's hand I'm going to take my time and seek advice before letting on we received the email so as not to jeopardise any tribunal we may need to submit. Once we are open with the LA about receiving it I will submit a SAR to see what else is being discussed.

How odd they would even try to undermine that skip by trying to do something so underhand/foolhardy.theres no way they could achieve that,so why even try?

I contacted camhs worker.her tone was that were are avoiding group and should come(last week we had no internet for the zoom dye to a Maintenance issues in box at top of the road) I'm very annoyed she feels that's the case.if she even thought for a minute about dd2 she would know her desire to comply and meet others expectations of her is ridiculously high so to say she's not able really does mean that.so I intend not to sign us in/attend and face her wrath at another point.ive not got mental strength for those kind of arguements today.ds isn't coping with raft new faces on his inline lessons,or timetable changes that make no sense/cut his ks4 work to one English and one maths a week

We all need a break tbh

Lil zoo had her last call from Bradleynot happy as he email us homework far too complicated to help her-mood diary she isn't having anxiety as such so saw pointless,a CBT model to use for her thoughts regarding using loos outside of home-her body says can we go,brain says no have to wait end of...and a questionnaire about self care which had questions like -do you have stimulating conversations daily(she's 13,do any DC that age?) And highly I appropriate "have you had intimate time with your partner" .anyways,he's conceeded she has a physical not mental primary concern and defer to school nurse,whom is drowning in referrals so school have asked for priority for her and now we wait ...she now has palpitations of 132 BPM at nightso have g.p app online scheduled next friday
DS has been given an appointment online on "understanding ASD and how to manage for newly diagnosed children" for december.school still not providing consistent education(teachers changing/lessons online not happening)he's so stressed he's not settling til gone 1 every night
Dd2 has returned to school as finding home learning without class discussions hardgoing and is sleeping as soon as has showered as so exhausted.she having panic attacks that accelerate at twice the speed of pre meds and last twice as long.no longer able to cry to relieve bud up stress either

I find dark months hard going by after xmas.this years stresses im drowning already and findinggetting up very hardeach day.need get a plan sorted in my head or we all going tocrash n burn

Hi everyone, sorry I have been awol. I will try and catch up on thread this evening to see how you are all faring. In the meantime, has anyone had a CPA review with camhs. What can we expect?
Our school spoke to psychiatrist and they have agreed this is needed. I agree but would like a bit of a heads up.

We have Anne. I'm sorry you are at this stage. Our first one was when DS was on the brink of admission due to his self injurious behaviour, the only saving grace being his age (then 6).

I'm well used to professional meetings, but for some reason I found the first CPA meeting extremely difficult. It caught me off guard. Perhaps because we were at breaking point and didn't know how to help DS. I was terrified he was going to be admitted, with difficulties finding an appropriate bed for his needs, where realistically he would likely be the youngest and potentially pick up others unwanted behaviour. I had the last worry at the CAMHS day unit too. I was on my own, DH was at work and had already had lots of time off that year, but looking back I wish DH had been with me for the first one.

You should have regular MDT meetings. DS' is around every 6 months, sooner if necessary. Does DD already have a care coordinator? If not, she will be assigned one. DS1's is brilliant, as was his previous one.

With your input a care plan will be developed that sets out DD's needs (physical and mental) and what support and help (medication, therapies, social care, help with everyday tasks...) she requires. Her goals, strengths, education planning. And what the risks are and a risk assessment (for example there are a few specifics that are high risk for DS1 self harming in his - being left alone, nighttime, unlocked windows, stairs, stone walls).

It also covers family circumstances (DS1's mentions DS2&3's needs and DD1) and housing/finances if there's any concerns there. Finally there will be a plan of what to do in an emergency or crisis (for DS this includes physical health emergencies and unplanned admissions) and contingency planning.

As far as possible DD's views will be taken into account. DS1 is present for a tiny portion of his reviews and doesn't say anything. We and other professionals collect his views prior to each meeting. He has very poor insight into his difficulties and finds a room full of professionals overwhelming (unsurprising). You and everyone involved should receive a copy of the care plan afterwards.

If you are nearing the point of admission since DD has ASD has anyone mentioned a CETR? If so the outcome will be in the CPA too.

Happy to answer any other questions about it.

Zoo it is all about the money for the LA. DS1 costs them £££.

The questionnaire sounds like it hasn't been adapted for CAMHS use. Very inappropriate. Where are you with DS' EHCP?

skip we are still pending with EHCP.the LEA agreed the psyche report tightened and wanted the outcome of ASD assessment.ww are trying organise a TAF meet for Monday,currently waiting many to get back with availability.iass will be invited to add where we are at

I think you should cut your losses and submit the paperwork to SENDIST. DS' education and SEN provision is lacking and it's unlikely to improve without going to tribunal.

Absolutely exhausted today.

Sorry to see your ds and ds are both still struggling so much zoo

skip while that email must have been awful to read it is very good to have the information. Thank you for your information about the CPA. It's very helpful.

day good to see some progress. It takes time but those little steps....

Dd has had a very difficult couple of months. The new school is wonderful but her ptsd and anxiety is still meaning she is struggling attend. She gets in for an hour or two most days but sometimes not at all. She ditched the sertraline in the summer, went on to fluoxetine and the dose was increased but ended up with gastric pain so the gp brought her back down. It had felt like it was having a positive impact at the higher dose, but the lower dose was not good. She had terrible thoughts all the time. She has taken herself off it completely, and we are waiting for a medication review with camhs.

School gave her 121 support a couple of days ago and she managed two full days in. She didn't quite make all the lessons but she was there and even ate a bit of lunch with the teachers one day. We have dropped a lot of subjects so she isn't overwhelmed and the school are working on a plan to help her. The 121 won't continue past January as we are paying for it but also there is a risk dd will become completely dependent on the person and that won't help in the long run. She is dependent on me at home and it is hard.

Having someone dependent on you 24/7 is draining, physically and psychologically, I hope you are looking after yourself too. People with severe MH difficulties can be incredibly intense. Has DD been reviewed by a trauma specialist? There are other medications if she is open to trying something else.

The new school sounds supportive, a relief having them on board. Please apply for an EHCP. It is possible to name an independent mainstream school with the LA paying both the fees and extra support. Even if the LA think a state school can meet needs some LAs will come to an arrangement for you to pay the fees and them the provision. DD would benefit from the provision that could be written into the EHCP.

Don't be too concerned about the TA becoming a 'velcro TA'. A good TA promotes independence rather than dependency. Dependency is often used by LAs and schools in order to not provide adequate support or fob parents off.

If DD can't attend school the LA still have a statutory duty to provide education.

I agree, I would always rather know than not. It is getting harder and harder to get DS1 to do any exercise. Getting him out of the house even into the garden is a chore.

Dd2 having a horrible time these damn meds
Depressions increasing rapidly.hapily stay in bed all day,no motivation,exhausted but agitated.her anxiety was dreadful yesterday.despite stiff aching hips I was pounding streets in the dark with her as so distressed needed to get out.will be ringing g.p Monday requesting additional meds camhs have suggested for anxiety (phenergan)feel utterly wretched we agreed trail them and my own MH is not doing well.ds requiring a lot input.dd2 even more and lil zoo isn't fairing great either.much harder than taking toddlers ever was as they stay up longer hours and argue back way more...

*taming toddlers

Hi zoo really sorry to hear about your daughter not improving on the Sertraline. I’ve heard it works differently in teenagers as their hormones are so up and down. It might be worth pushing for a different medication all together, if she’s this bad.
My son was also prescribed phenergen, to counter the insomnia casused by the Sertraline. It’s basically an antihistamine that you can buy over the counter and you don’t even need a prescription but if you get it prescribed, you don’t have to pay. At first, it knocked him out cold when he took it, as he wasn’t used to it, but the sedative effect wears off after a while. He was taking 2/night but he got really frustrated when it stopped working & one night took quite a lot. He said although it made him sleep, he felt really groggy the next day & along with every other med he was ever prescribed, he stopped taking it. Every now and again, when he wants to reverse his sleep pattern, or if he needs to sleep and knows he can’t, he takes 2 and it does get him to sleep, I asked for melatonin, but for some reason they wouldn’t prescribe this for him.
It sounds like you have so much to deal with at the moment, I really hope you manage to get some help. I think with CAHMs being so overwhelmed you’ve really got to emphasise how bad your daughter is to get help. When my son told a teacher at school he was suicidal, I managed to get him bumped up the list for CBT but as with everything else, it didn’t work either. He currently has an abscessed tooth and refused to attend the dental appointment I managed to book, so I’m not sure what we’ll do now.

balloons ouch!I've had those.excruciatingly painful.can you see the lump of pus?rinsing with water hot as CA take with bit salt helps draw them.if he's got a lump on gum apply heat and salt direct to that.once it ruptures be much better.however(experience speaking) they often return on same site after periods of stress as you start to feel better...
Am going to try getting script from gp today,also got some books to work through see if we can implement strategies by ourselves as I've no faith in camhs whatsoever anymore.only positive is she is on board to try anything and will work at it to improve

Thanks zoo unlike your daughter my son is no longer willing to try. I did get him a prescription for antibiotics which has helped a lot but I’m not sure if all of the infection has gone or if it will return? The dentist is going to refer him to hospital but I don’t know if he will go? Until yesterday, he hadn’t eaten for a week due to the pain.
I’m hoping this week will be better than last week. Good luck with the phenergen. I totally agree about CAHMS, I think it’s largely dependent on the branch but personally, I’ve never encountered such incompetence.

balloons agreed on the incompetence.ive ring g.p who haven't been given any info they may prescribe that on top.it requires camhs to have added it to list for g.p.as I already pay £15 a month for advance gaviscon for her reflux as it's no longer under drugs they will give us I cannot afford buy it on top of that.i now awaiting camhs(could be up to 3days) to chase up [name redacted]/her secretary and get letter go to get bloody script.why do they have to make everything so unnecessarily complicated

[Note from MNHQ - we have removed RL names]

zoo that’s awful. Are you within a reasonable distance of CAHMS so you could pick up a script from them today? They always have a Duty psych who can write scripts. I have called in the past and if they say the psych isn’t in, I’ve asked for the Duty/On call psych to write the script. Also not sure if this is relevant but once a young person no longer qualifies for free prescriptions, you can complete a HC1 form and get them a HC2 certificate so they can still get free prescriptions etc. I had to so this when my son repeated Y13 and was over 18, he ha sone now too.
If they aren’t being helpful you can also ask to speak to the manager or get advice from PALS. It’s really unacceptable to leave your daughter in this state and put you under additional stress. X

She's 16 but we are told won't perscribe gaviscon anymore😞

I hope CAMHS reply quickly and phenergan helps Zoo. I enquired about it but DS can't take it due to a medical condition/medication. I have reported your penultimate post because you have named DD2's consultant.

GPs can still prescribe gaviscon advance, they may not want to due to cost, but it is still possible for them to do so.

Are you getting everything you are entitled to? UC or CTC/IS/Housing Benefit. Council tax benefit (with additional single adult discount), carer's allowance and DS' DLA (perhaps think about DLA for DD3 &/or PIP for DD2).

Balloons does DS see the special care community dental service? If not, ask for a referral to them. They specialise in those with additional needs and nervous patients. They would go at DS' pace and wouldn't bat an eyelid at any quirks etc. DS1&3 see them. DS1 is still to even sit in the chair or speak.

Lots of services won't prescribe melatonin without a neurodevelopmental disorder, especially for older DC and adults. If the insomnia was induced by Sertraline, rather than because his own hormone level being low, melatonin may not help anyway. However, if DS did want to try it many buy online, including some on this thread if I remember rightly - maybe Anne or Blue?

Exhausting day.

Melatonin really helped us. Dd takes 6mg circadin 3 × 2mg tablets) which is slow release.
Psychiatrist told me if ever I had problems with paed prescribing it just to buy online.

Melatonin really helped us. Dd takes 6mg circadin 3 × 2mg tablets) which is slow release.
Psychiatrist told me if ever I had problems with paed prescribing it just to buy online.

Sorry Anne, I thought it was you who bought it online. I'm glad the melatonin helps DD. DS3 takes it (circadian) and it really made a difference for him. Not so much of an improvement for DS1 - immediate and prolonged released.

Dear 1skip thank you for the info Re: dentist. DS has been seeing this dentist for many years and will usually go but after several years of eating at night/period of repeated vomiting and not brushing his teeth, his teeth are obviously not in a good way. He had refused to go to a previous appointment and due to his age I can’t make him go but in the summer he was in extreme pain and had to have 6 fillings in one go and I think the dentist scared him. When the pain started last week and he was unable to eat, I think he got himself into such a state that he just refused to go, he didn’t say he wouldn’t go until half an hour before the appointment :( The dentist is supposed to call today and refer him, they are so busy at the moment, I hope they do call.
It’s really difficult as we haven’t had a proper diagnosis, I didn’t personally think he was autistic but I have seen a lot of recent behaviours of PDA, though I’m still not sure. The psychiatrist who was seeing him in Adult Services was a highly experienced consultant with 20+ years experience and even he wasn’t sure in the end. Ds refused to engage further and they simply dismissed him from the service. The psych finally admitted that none of the meds were working and he needed talking therapy, which I’d been asking them for for a year. Within weeks of being dismissed, lockdown happened and all the pressure to attend school disappeared overnight, ds actually improved massively when this happened but I’m not sure what he will do now, at the moment, he won’t do anything.
We do actually have some melatonin from the US and occasionally, I take one myself, though I don’t find it really works on me. DS tried it once when taking meds and it didn’t work, it would be good if he’d try it again now that he isn’t taking anything else but he’s adamant he won’t take anything now, not even a vitamin & he lives in darkness, usually sleeping in the day and up all night. He can reverse this when he wants to but otherwise, he p prefers this. The second the recent lockdown was announced, he stayed up all night and has slept in the day since. It’s really worrying but I have to try and accept it. He used to go out cycling in the middle of the night dressed all in black and there’s nothing we could do except hope he came back.
zoo did you have any luck with the phernegen? They has ds on 50mg/night which I now realise is a really high dose, he quickly got used to that though and I think it stopped working within a month.

I hope you hear back from the dentist quickly. The special care community dentist should still see DS despite not having a diagnosis. He is clearly anxious and has some form of additional needs - whether they are mental health needs, a neurodevelopmental condition or a mixture. DS1 is on the waiting list for a baby tooth removal under GA. If necessary they can offer sedation or GA to special care adult patients too.

It's a shame your DS won't take any supplements, he is likely to be Vit D deficient at least which won't be helping.

If DS isn't in receipt of PIP you should apply. And depending on savings etc. UC.

Does DS have an EHCP? If not, you should request an EHCNA. It can last until 25 and covers things like supported apprenticeships as well as college courses, although it ceases if at university where DSA is available. EHCPs can include things like CBT as well as support in school/college and independence skills.

1skip thank you for the advice, I will look into this. The problem is getting him to agree to anything. I’m certain he’s deficient in many vitamins and I’ve bought and offered multivits as a start but he won’t take them. When he first was seen by Adult Services, they said he would be eligible for disability benefits but he wouldn’t hear of it. I managed to persuade him to sign up for Universal Credit this summer, in the hope that a Job Coach could support him & so he’d be eligible for the kickstart scheme, he did want to do apprenticeship but he won’t apply & he won’t engage with the UC and so far they’ve kept paying despite him not looking for jobs. When he first completed the application, he did tick he would need help to look for job. The Job Coach tried to call once, while he was asleep & he never heard from him again. It’s hard to describe the level of avoidance, it’s driven by anxiety, I’m hoping the ASD assessment comes through one day so we can get a definite ruling on whether he has this or not.