Parents of anxious kids/teen support thread(part 4)

[Stilllivinginazoo]

Hi everyone
I cannot believe we are moving onto a fourth thread!
This is open to anyone looking for support or advice with a child or teen who suffers from anxiety
This is a long running thread and we have some popping in and out,some long term and some who just dip in for advice- all of these are just fine!
We understand the challenges of raising anxious children and how small wins matter(to others they're nothing special,and many are rude enough to say so!)and the sheer exhausting all consuming efforts that parenting very anxious children can entail
Only thing we ask is that others are respectful and kind.all situations are unique ,and there's no judgement allowed

Hey Roxie good to "see" you
How are things now with dd lovely?are you managing ok?

@Roxie55 how old was your DC? I'm starting to look at private. A family friend has recommended a Ed psych who she works with (friend is head of special school)
The Ed psych works privately as well

@1jumpforward2back after giving LA a little nudge we have had contact from Ed psych today.
I do wonder if they would have bothered if I hadn't

@alwaysscared my daughter was nearly 9 when it got to crisis, at the start of the pandemic however had been showing signs of anxiety for a few years. She is now 10.

@Stilllivinginazoo thanks for asking, it’s been up and down. Originally DD coped very well post pandemic and had a successful return to school after summer but by December things were starting to become stressful again. She had intrusive thoughts about dying again and we had some attempts at school refusal following the second lockdown. She started to find school incredibly stressful because of her ‘worries’ and her medication (fluoxetine) was increased. This didn’t help abs in fact increased her anxiety. The psychiatrist advised a switch to sertraline and so DD was weaned slowly off fluoxetine and started sertraline at the end of June which is the beginning of our summer holidays (Scotland). She is doing very well on this and has weekly therapy planned from this Friday. Fingers crossed it helps with coping strategies 🤞🏻🤞🏻🤞🏻

@Roxie55 yes, DS has been showing signs for years, but I think lockdown really made things a lot worse.
I'm so worried about medicine for him but can't see another way out at the moment, although we can't actually get to see a paediatrician to even start down that road

@alwaysscared it will need to be a child psychiatrist that prescribes medication. It’s a daunting thought but if anxiety is affecting the quality of our DCs day to day life the medication might be necessary to help them access therapy. When it became clear we were getting nowhere with GP (except a CAMHS referral) I found psychiatry UK online and managed to book an appointment within 3 days (secure video call). This resulted in DD being prescribed medication. We had the prescription within a week. The psychiatrist sends all communication to our GP to keep them in the loop and when a CAMHS appointment is made available we hope to switch to them.

Is it possible even to get DS out a walk?

@Roxie55 sounds like going private worked well for you
No, he won't leave the house at all, except the back garden

@alwaysscared It must be so difficult for DS and for you. My DD was like that for a short period too. We had to come home from a few walks during lockdown but it did get better. Could you try and encourage him to stand outside the front door with you for 5 minutes and try to build it up each day? Even if he sat outside the front of the house for a few minutes but on his tablet? Might help him see that nothing bad happens. Just a suggestion, I know how challenging it can be.

@Roxie55 that's the plan, we have a drive so I'm going to try and get him to the end of the drive soon
I'm glad your DD is doing better now

Always - asd, anxiety and arfid is a very difficult combination.

We are under edc. Advice is to let them eat whatever they want, whenever they want. No pressure to extend range of foods, just get more calories in from safe foods. If they need to eat in another room or with ipad, that's ok.
When they aren't losing or not gaining, then try to address the anxiety. Use facts. Evidence. Gradual exposure. It can take a very, very long time to introduce new foods

@AnneOfAvonlea thank you. Yes, we do let him have his safe foods. He eats away from us because he can't stand to see our food

Roxie its brilliant to hear of your progress.

Zoo It's not something that gives quick results, it requires persevering with and constant reminders. Then you start to get to a point where when DC irrationally build up a worry you can bring it round to how big a problem it actually is and is their reaction in proportion.

always you don't just want an EP assessment, you need to make a formal EHCNA request. An EHCNA consists of more than an EP assessment and also means things have to be done within statutory timescales. An EHCP legally guarantees DS support that you can not guarantee any other way. If the EP just assesses without getting an EHCP you can not force the school and LA to provide the recommended provision. Also, it is common for LAs to make promises but not deliver. Does the friend teach in the same LA you live in? If so, and the EP works for the LA they won't be able to assess DS privately. When looking for an independent EP make sure they are willing to act as a tribunal witness if necessary. There's quite a wait for independent EPs at the minute.

Left to it DS1 would never leave the house, but it is one of the things we insist on doing each day. Once DC with MH problems get out of the habit of doing something it is 10 times harder to get them to restart.

Hello everyone, haven't posted for a while but keep my eye on the thread. Can't believe it's August already! Hope you and your DC are managing to enjoy the holidays although I appreciate for some it's a temporary relief before term-time stress sets in.

I'm currently working on EHCNA refusal appeal and to be honest I am finding it a daunting process and worry about not making the case well enough - feels like I need to become some kind of legal expert to succeed. Following good advice from here I've got copies of information submitted by school/CAMHS/EOTAS provider etc along with additional information from school and EOTAS to support appeal. Managed to find a lovely Ed Psych who fitted DD2 assessment in this week and will write report. Waiting to hear back from mediation so I can get the certificate. Have printed out IPSEA info and keep referring to it to make my arguments. Basically paperwork everywhere and not sure my arguments are succinct enough (not my forte).

DD2 medication changed from Fluoxetine to Sertraline to see if it helps with her anxiety. Only a week in and anxiety and low mood currently worse than usual but it's early days. CAMHS "homework" of getting DD2 outside every day and building up to going for a walk has gone backwards and currently struggling to get her out of her own bedroom. ASD referral was done at last CAMHS appointment.

Finally received PIP forms to complete for DD2 as well just to add to he paperwork pile!

DD1 off to university in September and qualifies for Disabled Student Allowance which helps with cost of laptop, printer, assistive software and 1:1 study support. I'm struck by the contrast accessing help for DD1 at university with relative ease and the battle to try and get help for DD2 to allow her to carry on with her education.

muddlinggosh,that sounds stressful.i hope your appeal successful.it must be extremely frustrating having such a contrast for your children.goos luck for D's in sept!

Thanks Zoo. I'm scared of messing up the appeal to be honest.

DD1 has worked hard to earn a place on the course she's going to study at university - I am excited for her and nervous about her going away. Thank goodness for modern technology and video chat to make keeping in touch easier.

Hi just want to pop on and mention a medication we are trying for mood disorders but also OCD and mainly the low of a mood disorder called Lamotrigine.
The Psychiatrist gave it us off label because it’s used more in USA than here for bi polar and depression but he has found it to be a very good low side effect medication for many disorders.
You have to start low and move up the dosage but it has been excellent for my DD. She is on 50mg daily and it has worked way better than the fluoxetine.
She said her racing thoughts have slowed and the OCD has faded a lot and she is generally so much more chilled and sociable.
The Psychiatrist said that sometimes so many issues present at the same time it can be counterproductive to label one but we are probably closer to a mild form of bi polar than say just OCD or anxiety.
Anyway just wanted to say how helpful it has been and it’s only £6 on the private prescription so not a massive cost either. One to look at if various anti depressants don’t seem to be helping.

Bagpuss, thats helpful to know, DD is on setraline 175mg so high dose but still struggling ,she says it's helping and it has made a difference but still can't manage school and rarely leaves the house. But the holidays have bought a welcome release from all the pressure ☺️ I have a couple of weeks off too so am trying to get her out of the house ,even briefly , every day ,which is much easier when Im off work. Dont know if its worth asking about trying another medication, clearly medication isnt a magic wand.
Muddling, sending you lots of luck with appeal. Thankfully our LA agreed to issue a draft but recommended mainstream which DD isnt coping with so will have to go.through tribunal to get specialist but its soo stressful and hard to navigate the system and find out if a school is right for DD, don't want to apeal for something that turns out not to right! such a lot riding on it, particularly as she is going into year 10 ,cant afford to muck it up, feels like it is taking over my life.

Muddling- just to add is there any local support groups that can help you through the process? In my area there is one funded by LA and also a charity support group set up by parents, there is also SOSSEN but I have never managed to get through to them on the phone, just recorded message to try again later. The local support groups have been really helpful so worth investigating if you haven't already

Thanks Runner - I will have a look the local support groups as I hadn't thought of that. I keep referring back to the IPSEA "refusal to assess pack", have been in SOSSEN website and local SENDIASS have also been extremely helpful. I have the mediation certificate now too.

Sorry to hear you are still battling for the provision your DD needs and hope you enjoy your time off and manage to motivate her to go outside. I know how challenging it can be when you are supposed to be working at the same time. DD has had a shower and hair wash today so I'm pleased!

ilove that's brilliant to hear. We saw an improvement when we added an antipsychotic in as well as the antidepressant.

Runner don't forget about IPSEA's helpline, too.

Muddling SOSSEN's helpline doesn't run over the summer but you can fill in the form on their website to see if they have capacity to help. If not, IPSEA have a tribunal helpline and can sometimes offer volunteer caseworkers. You're not alone in finding the contrast between school support and DSA startling, it's a common theme. DD2 gets DSA and the process is the complete opposite. Ask to become DD2's appointee for PIP.

How is everyone getting on? We've had a mixed week. I took DS's to a quiet trampolining session which went really well, the following day didn't go so well as during a meltdown DS1 cut his head and needed it gluing.

Mixed bag herejump
DS highly stressed as lil zoo was "weird" when saw him at firnightly sleep over at dd1.hyper then crying all evening and wanting reassurance dd1.really upset him and he came home early low and agitated on Sunday
Made a card for dd1 wedding(3 weeks today) and one for dad's birthday(later in the month) at wellbeing at church which was really good
He also made a banana loaf with minimal verbal help(I did do the oven stuff,but weigh and mix by himself for first time).it's just a simple vegan BBC food recipe,but he was very rightly proud of himself(and house smelled fantastic!)
Dd2 not had great week.ed team clear she hasn't got one,purely anxiety driven eating issues they've batted her back to camhs.knowledge her friendships aren't very equal came out during call and she's felt low and isolated this week.shes also been found to be both anaemic and low thyroid,so hoping meds for those make her feel bit better(picked up at pharmacy today)
Head year in office next week,so hopefully will hear if they will allow repeat year 12(deffo not allowed progress year 13 as missed to much coursework and assessments) given camhs have sent email of the initial findings of panic disorder and depression we are hopeful if a medical grounds exception to rule

Still no contact bar daily "snap" she sends me D's and DD.they occasionally get texts,D's tries get her talk a bit now and then.im blanked

Had a chat family therapist at camhs Friday.our family "has complex needs" so we going have another meet next week then decide if it's something to persue.he seems really nice
I'm just tired living in a goldfish bowl.childrens first did star assessment.only flags were school and social isolation,which will hopefully pick up sept.that just leaves try sort lil zoo who refuses to talk or come home
I'm very low,tired and tearful.everythjngs getting on top of me.hoping once term time starts structure will help,even if life here will be much more stressful trying to deal to highly anxious DC and school ..

Mediation tomorrow. Wish me luck

Had our appointment with school doctor today, couldn't actually go there as DS to anxious, so they did a video call. She is referring him for ASD assessment which I guess is a good thing.
He's slipped back to just staying at home all the time and constantly anxious. CAHMS can't help, still on waiting list which is currently 30 weeks, we are on about week 12. What the hell do we do? Mum says force him out, but I can't do that, it's too distressing for him. Feel so trapped

always given his acute distress I any help but think medication,even for a short while would be beneficial.he cannot engage in helpful learning strategies to manage himself whilst his anxiety levels are so high.
How are you coping?I can't remember what your family/support network is like
Anne good luck lovely🍀🍀🍀🍀🍀🍀

@Stilllivinginazoo thanks, yes we have a good support network, although sometimes judgemental!
We don't want to go down the medication route unless we really have to but I guess we will see what happens