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

Sorry I've not been around much
Things aren't great here-everyones struggling and 3dc all kicking off in different directions at once by myself Is HARD
on plus lil zoo was off yesterday with a bad cold/gut pain and I had attendance meet booked for today so I said no matter what she had go today or I'd get eaten alive.sent her,feeling awful as she wasn't great.they had call me before 9 to collect as white and bent double.think lack sleep with the cold ment couldn't just suck up her usual levels pain and keep going.they have now decided support for her refusing to go loo at school(causing knock on effects to eat and drink and severe pain is constipation back up,but won't take laxatives as expected to go school because attendance merry go round) and she's now no long primary urgent attendance problem
DS taxis are a joke.yesterday we had a lunatic conspiracy driver who told all kids not wear masks,covid doesn't exist and pcrs are to take your DNA I was HOPPING MAD.cant get hold anyone at council to complain as low staff offerings and all WFH(been constant prob with EHCP team too).he's not in today,but terrified I do complain they will get him as knows where he lives
Time to talk have taken up working dd2 yesterday.hopeful that will help before she has a full breakdown

Thank you all - I did think of propranolol as a possibility to help with the physical symptoms DS is experiencing.
His psychologist spoke to the psychiatrist today but unfortunately there was a bit of confusion and the psychologist was under the impression DS had both ASD and ADHD diagnosis - he was referred for both but only diagnosed with ASD, anyway the psychiatrist suggested that ADHD medication would be the first thing to try and asked the psychologist to contact paediatrics to ask them to prescribe.
DS was discharged from paediatrics after his ASD diagnosis and obviously they won't prescribe drugs for a condition he doesn't have.

Psychologist will speak to someone again tomorrow. In the meantime I phoned my GP who said to get urgent appointment before tomorrow to phone 111.
111 won't provide mental health help for under 18's.

I'm just going to phone the GP surgery again first thing in the morning to try to get an appointment tomorrow, I will ask about propranolol then.

I just hate the way there isn't any real help for these kids. Schools just aren't set up to be able to deal with mental ill health and seem to end up making everything worse.

I haven't applied for an EHCP - I will look into doing that though.

We have had a (late) response from the LA to our EHCNA application - they have turned it down. The application went in with letters from GP, CAMHS worker, school and psychiatrist, saying that school was a huge trigger for her suicide attempt and she cannot attend. LA have responded that school can meet her needs from the existing budget.

I am so fucking angry. And the prospect of dealing with the process whilst providing 24 hour care for a child with massively complex mental health needs, plus working full time feels like it might break me.

@Bubbleswithsqueak - I'm sorry to hear that - it's so unfair and frustrating. I have been there with the refusal to assess. Someone with far more knowledge than me will be along shortly but I think it's fair to say that many LA's refuse automatically in the hope that parents won't appeal and that most appeals for refusal to assess are won.

bubbles I'm so sorry,like muddling I agree they are relying on you not bothering to appeal
Hopefully @1leapforward2back will be able to clarify this for you as she's our longtime experienced advisor in this department
Please reach out to us if you need a place to vent,for the sake of your own MH
Caring for children with extra needs is HARD

@Bubbles I'm so sorry with this result. I can understand your anger. But the system isn't working if the L.As can play this game again & again.

Bubbles do appeal, the vast majority of refusal to assess appeals are upheld. Don’t bother with mediation, just get the certificate and submit to SENDIST. You only have to consider mediation, not actually actively partake. Many LAs use mediation as a delaying tactic, and if they are going to concede they will do so regardless. Some LAs concede as soon as they see the parents are serious about appealing.

MumofoneASD IPSEA have a model letter you can use to apply for an EHCNA. They and SOSSEN have a lot of useful advice on their websites, both have helplines as well. The SN boards on here have knowledgeable posters too. 111 would direct an under 18 (or under 16 in some areas as in some areas the adult on call crisis team will see 16-18y/o’s in crisis OOH) in crisis to A&E. Even if the psychiatrist thought DS had ADHD nothing like passing the buck asking the psychologist to contact paeds instead of prescribing themselves.

Zoo sorry things are so difficult at the moment. At least school are mor3 onboard now with DD3. I would complain to the Director of Children’s Services about transport. Do you have their email address? If not I will find it for you if you want. DS1 can’t take propranolol either due to a medical condition.

Sorry to hear that bubbles. We had exactly that but appealed and after a lot of wrangling finally the LA conceded. Now we are appealng over content.

1leap - thanks for the advice. DD has asked me to order some scandishakes so she obviously realises she isn't in the best place. I'm going to see if she will take them. If not i will contact camhs again and ask what i am meant to do....
We have a camhs Psychologist assessment (for her ptsd) in about a month so that may be helpful.

Zoo ,I'm so sorry things are so difficult, do take up leaps offer of an email address and complain about taxi service. I hope DD2 finds the support helpful and it averts a crisis and hope lilzoo is better soon, of course she won't want to take laxatives on a school day, bless her,it's terrible you were in the position of having to send her in at least school saw how ill she was and the impact of having to attend.
Try and take care of yourself.

Bubbles -do appeal,I know you will anyway but honestly I think LA just try and put people off, from what you said and the documents submitted its outrageous they won't assess.
We are battling with an appeal atm.
I was told by specialist school headteacher that our LA loses 95%of appeals ,ffs why do LA put parents and children through it? It's outrageous clearly LA aren't meeting needs or abiding by their statutory obligations.
I'm hoping we will be in the 95% not the 5%!
By hook or by crook you will manage it somehow and it wont break you although it may feel like it sometimes! so sorry it's been made so unnecessarily hard.

@Zoo good luck for a better day tomorrow and a healing nights sleep for you all. Hopefully a good day without you having to sort out several different issues at once 💚 💜

I took propranolol years ago for migraine prevention. Loved it. It made me calm and actually helped all make aching joints too :)
I had to come off due to needing to go in a different med with would office with it.

Hi all, not been on for a while as we have been having a really bad time.

Has anyone paid for a private psychiatrist for their child? I’ve just spoken to the crisis team at CAMHS and they have said he’s still on the waiting list, and the wait for a psychiatrist is 9 months. I hate to say this but I think he needs meds to calm his mind down enough so he can at least function and eat.

Hi @alwaysscared
So sorry it's been tough.
Yes we paid for a private psychiatrist out of desperation as 18 months later still on waiting list to see CAMHS psychiatrist, they seem to have a recruitment problem.
Anyway I would recommend going private if you can whilst staying on waiting list for CAMHS.
We are lucky that there is a private clinic for children's MH and ASC diagnosis etc in a nearby town so found one quite easily.
Unfortunately they are expensive, I think initial assessment was around £350 and subsequent appointments have just gone up to £200 ( was £175) .if possible they can send prescription to GP to prescribe so you dont need to psychiatrist for private prescription. Setraline is around £30 but Circadian ( melatonin) is around £75.
The one DD sees is patient and kind and asks mainly practical/ factual questions so not probing personal type questions like a counseller iyswim so DD prefers it.
It has been helpful although medication hasn't had as much impact as expected so just in process of changing medication.
Also should say the environment of a private practice is very calming and tranquil, unlike camhs!
Don't feel bad if you feel he needs medication, it will only be prescribed if it's necessary and if it is necessary treat it like medication for any other medical condition, there should be no shame.

@Runnerduck34 thank you. I'm worried about meds because of the side effects. He is so conscious of everything in his body so wouldn't react well to adverse effects

When DD went on setraline she did have nausea, it took about 6-8 weeks to adjust, she definitely needed to take it on a full stomach ( not just with a biscuit !)
unfortunately sometimes they do feel worse before they feel better, luckily when she changed medication she didn't have side effects with new one.
So it is a worry I know but of they can cope with it , it pays off .

Sorry everyone is having such a tough time.

Thanks for the guidance re EHCNA, PIP etc. I have no clue about any of this and have a lot of research to do. I’d like to understand the benefits of having PIP, DLA so will do some reading. I don’t need the money and feel guilty taking it because of that.

Mixed week here. DS refused school on Monday and every day has been a battle getting him up and out. Apparently it’s one of his biggest sources of stress but I can’t just leave him. He’d never go. He had an inset day today though and did get up and go out with friends into town which I’m pleased about.

DD has got herself a part time job at a fast food place (ironically) and seems to be struggling a bit with it. Let’s see how that goes. She is loving the freedom of the money that comes with it but it’s stressful apparently.

@alwaysscared not the same but we paid for private counselling for DD when we were waiting for CAHMS and it was worth it.

Barry we get DLA for 3 DSs, we could afford not to claim it and my carer's allowance but we claim it for several reasons. DSs are entitled to the money, it is theirs not ours. It is not means tested for a reason. David Cameron claimed for his son. For us it doesn't cover the additional costs, but it helps. You should claim, you having nothing to feel guilty about.

It allows us to randomly spend £££ without thinking on all the things that might help but don't - Privacy Pop, dream pad pillow, SAD lamp to name but a few. And the vast amounts spent on assessment, reports and treatment and equipment not available on the NHS - dental treatment costing £10k that would normally be free for children if only DS1 didn’t have additional needs, specialist SN buggy, specialist SN car seat, specialist bike trailer. We can indulge in DS’s special interests a bit more than we otherwise would too. And give them many experiences to a greater extent than we otherwise would.

We have also found it acts as evidence of need e.g. access passes for e.g. theme parks, carer's tickets for museums etc., respite clubs, charities, blue badge (it is possible to get a BB without DLA/PIP but certain DLA/PIP awards bring with it an entitlement to a BB), CEA card for free carer's tickets at cinemas, disabled railcard, disabled bus pass, it is a gateway benefit for claiming UC when a full time student, 2y/o nursery funding...

Care in adulthood costs a fortune, anything you can save would be beneficial just be careful of saving in DC’s name due to means testing of benefits and care.

alwaysscared I’m sorry things continue to be difficult. Did you apply for an EHCNA? A psychiatrist assessment can be part of the needs assessment.

if possible they can send prescription to GP to prescribe so you dont need to psychiatrist for private prescription.

Be aware not all GPs will take over prescribing from private HCPs. This is becoming more common. So if paying privately long term would be an issue check beforehand.

@BarryTheChopper I felt the same about claiming

Posted too soon! About claiming PIP for DD2 (17) but I decided to last summer when EHCNA request had just been turned down and things were feeling uncertain. I am DD2's appointee. The booklet you have to complete is quite daunting and I completed it in a few sittings using CAB guidance and also discussing questions with DD. If awarded DLA/PIP payment is backdated to when you applied.

DD2 was awarded PIP and I'm ok with it. I completed the forms honestly and provided as much evidence as I could - someone else has assessed the claim and awarded PIP. It's DD2's money and she is entitled to it. Mine and DH's financial situation could change in the future meaning we might not be able to support her financially as much as we are able to now. I don't know how long she will need additional support for but this money could help her now and in the future. She may always struggle - I simply don't know. If there's something that could enhance her life day to day or encourage her to engage more, then she will now be able to afford it within reason.

Always - private psychiatrist was best thing we ever did. We got autism and diagnosis, and medication. Tye camhs waiting list took another 12 months. I dread to think where we would have been otherwise.
We did switch to camhs as I thought we would benefit from multidisciplinary approach but it's not really working out like that tbh so we may switch back to private soon.
I'm going to see what our independent ehcp private assessments say she need. Costing me a fortune but I think will give us a great baseline.

Sorry, me again! DS is having constant anxiety, all the time now. With this he feels extremely nauseous which brings on panic attacks. We have been using antihistamine to help, in small doses, but it isn’t working. Has anyone experienced this? Is there anything we can try? We were up until 3am with him panicking with a bucket. The nausea just makes him 10x worse.

@always I think you need to take your Ds to see the gp.
The slightly sedating effect of the antihistamines is probably wearing off if you're using it often. I've looked up the use of propranolol but it's not used in under 12's. Have you asked for an urgent Camhs referral? Other than that book a private psychiatrists appointment as soon as possible if you can. I'm sorry you're going through such a tough time.

I can't even get him out the house, he can only just function in the house.
Antihistamine also have slight antiemetic qualities but they don't seem to work. Was thinking maybe kwells or something to take away his nausea

Tiktokcat you can get MH therapies/interventions written into the EHCP in section F so if CAMHS won’t/can’t provide it the LA must seek independent provision. More general CAMHS reviews can be included in G but aren’t enforceable in the same way.

Always CBT, grounding and deep breathing relaxation techniques are likely to help. As is helping DS recognise the physical effects of anxiety are because of anxiety and not because of an organic cause.

Many GP appointments are still via the phone so DS wouldn’t need to leave the house. However, DS is a child and medical appointments have to be none negotiable, he cannot make a rational decision otherwise. If DS was physically ill you would force him to seek medical advice even if he was anxious about going.

Fferny propranolol can be used in under 12s, although its use for anxiety is off license and it is unlikely a GP would prescribe without CAMHS, or private psychiatrist if they agree to take over prescribing, initiating it.