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

Bigbus sorry to hear DD2 is struggling - I hope things will improve for her soon. Otherwise it sounds like you are managing well. And you are an NHS employee- thank you 🙏 .

Zoo always nice to catch up with you! Things sound stable at the Zoo residence -lovely to hear. Has your daughter’s wedding been postponed?

We’ve had ups and downs. My MH isn’t doing as well as I’d hoped during lockdown. I’ve always struggled with anxiety and depression but has largely been under control for a while. When it does come it’s usually due to DS1 or health anxiety. And then I struggle as to whether it’s rational or irrational. This morning was very hard to get up. Hoping for a good weekend for us all! Still a bit chilly here for May.

Zoo, it's brilliant DS is managing school work. All that time you were left with no provision. What a shame it took a pandemic for the school to help. I hope the sleep consultation was helpful. DS1 still struggles with nights.

Big, sorry DD2 is struggling.

Viking, I also struggle with where the line between rational and irrational lies. Counselling has helped somewhat.

DS1 is loving not going out. Although virtual therapy sessions and tutoring are a challenge for him. He's needs face to face, which is why online schooling isn't suitable. Apart from missing clubs DS3 is OK. DS2 is hating it. It is lovely to have DD2 home from university, but I will need to go on a diet with all the baking and cooking she is doing.

I'm concerned about what happens when the rest of society starts to resume 'normal life' and about the changes to EHCP provision.

Viking yes it has.reset for a years time with venue,no money lost thankfully

Onehop sleep consultant was "interesting" she was shocked we don't have Alexa or blue tooth speakers and is adamant no blue light tech in his room so soundscapes with his colouring has to stop,as does podcasts.forst night settled ok,looked exhausted when I woke him+apparently many wake ups in night.last night much harder and much more stressed in day.his "big worries"(so big to him he can't tell us about them)are escalating as he's go no distractions at bedtime.i forsee some tough days ahead.next call will be end of week coming....

Dd2 happy in lockdown,said yesterday be happy to stay like this forevershe chat online to people and being at home full time is starting to focus on self-care,as am I,which is new to us both and strange as has always felt a waste precious time or unworthy

I hope DS is settling into a new routine, Zoo. Can he write his worries down? We don't allow DS' blue light tech at night either. Although in desperation I tried letting DS1 watch the Lego movie, it didn't work so stopped. What about a CD or MP3 player or iPod shuffle?

I'm with your DD2 on how stressful shopping has become, and I'm not even going to a supermarket. Prior to this we had a weekly Tesco delivery, meat and a few bits from the local farm shop and did a top up shop. We've had to swap supermarket deliveries because it's not possible to stick to Tesco's 80 item limit. We spent £££ on food anyway (no idea how many on MN feed 5/6 for as little as some say) but now it's even more.

Viking, I think it's Mother's Day where you are? I hope you have a relaxing day today.

This article from special needs jungle is interesting reading for those with EHCPs, those thinking about applying and those who have been turned down previously.

Hi everyone,

Sorry I have been AWOL. I havent read the thread so I will go away and catch up but I thought I would come back and let 1step we I got DLA awarded at middle tier for personal care. I was expecting low tier so it was a surprise.

AoA

Well done Anne. I am glad you applied. Do you think no mobility is accurate? From your posts I would have hoped for LRM.

When you are ready please do apply for an EHCNA.

She needs taking to and from school as doesnt have energy or stamina due to selective eating. But now that school is not on she is riding her bike short distances each day and building that up. I'm not sure how far we would get if we challenged.

LRM is not about physically being able to walk. It covers needing "guidance and supervision" when outdoors. For example, will DD not go out alone, does she need encouragement or reassurance, would she place herself at risk with strangers, has she poor road sense, could she ask for directions, follow directions, is she likely to become overwhelmed with anxiety or have a panic attack?

I would expect someone with DD's level of anxiety along with ASD to get LRM. However, do be aware if you ask for a MR they will re look at the whole award, so there's a possibility the care component could decrease. Though you would have a strong case for tribunal if that happened.

Yes it is 1hop - thank you .

Ah yes 1hop, she is terrible with direction and does not go out alone due to this plus anxiety. Not sure I want to resubmit though :(

Psychiatrist appointment today and he has confirmed PTSD due to the incident that happened at school in autumn term. She is having more and more flashbacks. He gently explained the solution was cbt or emdr but as she isnt keen on talking and confronting things he says she has to be ready for treatment. We also discussed changing medication from sertraline to fluoxetine - does anyone have any experience? We arent sure the sertraline is doing much for the anxiety tbh.

Anne we get LRM. DLA for D's as he couldn't ask for directions,isn't safe with roads/traffic and if stressed tends to bolt/run away without thought of where he's going!

Bad day with dd2.shes been increasingly irritable this last week.todat she actually retreated to be virtually in tears all pm

One hop we don't have any tech we can sub out.hes so overwhelmed by his worried he cannot communicate almost all of them to us.we do know he's afraid of death and of anything happening to me...

Anne, personally I would ask for a MR because you have clear evidence DD meets the MRC criteria. However, others wouldn't risk the possibility of having to go to tribunal for 'just' LRM given MRC is the qualifying award for other things.

Flashbacks are horrendous. The treatment problems you are having is where we have been for years. DS has PTSD as his primary mental health diagnosis, but can not engage with EMDR or trauma focused CBT. We plug away at what he can access in the hope of getting to a point where he can. He has tried a couple of antidepressants to find one that works for him, he takes mirtazapine now which is often used for PTSD.

Zoo, if an Alexa, speakers or iPod shuffle/MP3 player may help then I am going to prod you to apply for a Family Fund grant. You should apply anyway but something to help at bedtime would be something they would grant. DS1 has the same worries as your DS. Sorry DD has had a difficult day.

Anne so nice to hear from you. I’ve been having the same conversation with myself about sertraline. DS1 started it in January. How has her selective eating been lately? This is an issue in my home as well.

Zoo I’m so sorry to hear about DD2. I realize now I had meant to inquire about her in my previous post but apparently didn’t .

Bad couple of days here too which has taken toll on me. Trying some self care today if/when things calm down.

Little morning rant here

NDN allowing her 12 year old granddaughter who lives with her to have a friend visit and play together in back garden on trampoline etc.ds can see/hear them and has heard them saying can't stay away from each other forever.last night after start get dark they retreated her bedroomwith loud music on you tube and lots squealing /laughter..
He HATES music at best of times and when super anxious

I am sorry to hear you are having a bad time, Viking. I hope you have managed some time to yourself this week.

Zoo, it is good of the school to buy an echo dot. I hope it arrives quickly and helps.

People like your NDN annoy me, I wouldn't be able to bite my tongue. Especially as she is putting extremely vulnerable people at risk without their knowledge. Those with CF who have had CV appear to have coped OK. Although not a big enough group to draw major conclusions from, too early to say what irreversible damage it's causing and those that are well with good lung function and BMI are generally going to fare better than those further along disease progression.

I am terrified of DS' getting it. They won't be going anywhere for the foreseeable. I'm trying not to think too far ahead.

Not surprised you were cross zoo. Good the school are supporting now and fingers crossed for the dot.

Not sure I have the energy for a tribunal onehop so I think I will leave it. Dealing with dd every day is very challenging. Her lack of social understanding plus the flashbacks brought on by her anxiety are becoming all encompassing.

Her selective eating is as bad as ever viking and she eats cereal and pasta. However we have accepted this now and no longer battle against it. We had dietician recently and she has put on weight but has grown 5cm so her bmi has actually gone down. Her joints ache because her muscles arent keeping up with her bones.

She has decided she doesnt want to change meds but she wants to increase the dose of the sertraline so we will see if that helps.

DH and I are both trying to wfh and it is a challenge.

Anne that sounds hard.ds has gained but also shot up to near my height so the BMI has gone down he eats like a horse tho,so I've no idea how to improve things.dd2 ok not eats her safe foods most of the timeshe has been pushing herself and yesterday she had nut butter rather than Marmite on toast and has developed a serious live affair with blueberries eating a punnet a day
Lil zoo has started to pick her fingers badly and we watch call the midwife together daily on netflix(watch a seasons them start again) she never cries at sad things and has start question why they respond in a certain way.i mention to senco yesterday during D's weekday care call and she's adviced me keep it a written and present to camhs if it starts stacking up quite rapidly as there are concerns high functioning ASD..
OnehopD's and dd2 couldn't cope as both super body aware if they are poorly so we are extra careful

I've heard that outreach are probably go reopen 1st June as 10 pupils,not all in all the time,20staff and 3largeish classrooms.ds won't be returning as I don't feel it will be beneficial at this point.hes achieving 2hrs of work a day,engaging via email with English teacher there,and with old key workers from senco at roll school as doing some the work set from them too.he was in early stages of visiting outreach so doing more volume of work here and cannot express if feels I'll making him a liability plus I'd have walk him90 mins there and back for a 90 Minute lesson....

Anne, can you fortify what DD will eat? Or will she notice? DS' need a high calorie, fat and protein diet so I sneak calories and fat into lots of things. Same for your DS Zoo. If you can't fortify what they will eat you could add in drink supplements either OTC ones or getting them prescribed by dietician.

Zoo, DS is entitled to transport. Did DD3 get accepted on to the ASD assessment waiting list?

DS' are in the shielding group so won't be going back to school or having tutors/therapists here until at least September and then we will see.

Anne, it is exhausting looking after a child with additional needs. People don't understand unless they've lived it. Living with a child with anxiety saps your energy. I understand not wanting to risk going to tribunal. Some of Beacon house's resources can be good reading for trauma - and associated anxiety and sensory problems.

1hop - dd had milkshakes prescribed by the dietician but she is refusing those now. She would notice if we tried to add anything to her food and then it would stop her eating the one food she will eat.
I will look into bacon house.
She has started saying she wants to be locked up during her meltdowns as she is stupid and will never get better. It is breaking my heart

That's a shame Anne. Does DD not want the milkshakes because she doesn't like them or she just doesn't want them? You probably already know there are plenty of different ones if it's because she doesn't like them, including juices and more concentrated high calorie, low volume ones. We tried a few with DS' to find the right ones, though there isn't many for DS1 with his milk allergy.

I add cream, butter, cheese &/or olive oil to most things. I started small and gradually built up. But you don't want to lose a safe food.

Don't be put off Beacon House's resources by lots being about developmental trauma.

onehop we are adding skim milk powder to D's full fat milk to enrich it.he has full fat dairy and add butter to stuff and he loves avocadoes and some nuts
Until I have banked up enough evidence I think dd3 has ASD concerns we going no where fast as she's "high functioning"
No one's bothered about dd2 despite her MH swinging up and down like a yo-yocamhs utter waste of time currently.they just tell her to keep doing what she's doing!!(trying give herself routine/structure) she's so fed up with them agreed to a fortnightly check in rather than weekly now as she gets upset in days run up to it and very low couple days after as it's not doing anything to help or support her at all

I hope you can convince them to assess DD3 soon. The good thing with the swap to ASD is the move away from "high functioning." I don't think it's helpful. People assume fewer needs and that leads to poor support, especially for girls. Sorry to hear DD2 isn't finding them helpful.

We added skimmed milk powder for DS2&3 in the past, but stopped once DS3 put on weight after starting overnight tube feeds. They prefer adding cream &/or cheese. They have jersey milk, which I add cream to for some things. Unfortunately oat cream and oatly barista don't mix well, so can't do it for DS1. DS' are allergic to peanuts and tree nuts but would your DS eat a nut butter?

It's going to be a long day. DS2 has way too much energy.

Sorry, not been on for a while, I'm sorry to hear everyone’s problems, we’ve been having problems here too. DD has been ill for three weeks now with intense headaches, dizziness and nausea which we have put down to stress migraine, she’s been so ill and then on Friday she had such intense stomach pains I had to phone 111 to ask for advice, they sent a paramedic who gave her codine I’m taking her to the doctor next week(if I can get an appointment), I think it’s all anxiety related but I obviously can’t be sure and she is so ill she can’t do anything.

Has anyone accessed a doctors appointment recently, will they consider anxiety to be a reason for an appointment at the moment?

I am sorry to hear DD is unwell, Dispair. I hope you get an appointment, and you aren't dealing with something else on top of her anxiety. The physical manifestations are just as exhausting as the psychological ones. I think you'll get an appt, if only to confirm it's anxiety and rule out a physical cause. We've had a few GP appts - a couple of phone calls checking we are OK and a video call for DS1's infected eczema, they went better than some of the other appointments we've had during all this.