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

Hey bigbus, disordered eating here too, amongst other things. Nice to see you back.

I finally sent off my Ehcna request today. Lets see what happens. Do is vulnerable so will still be be going to school of I can get her there.

Hope everyone manages to find some joy in the start of the new year

Wishing everyone a Happy 2021 (setting a low bar after 2020, I know).

DS1 just turned 18.... low bmi here as well. DS2, 12, having his own ups and downs re: behaviour. Continue to be grateful for this little corner of MN, where I don’t feel all alone on the bad days.
Nice to see you again Big xx

Lovely to hear from you Viking

Same zoo. Miss you, and I’m sorry to hear how things have been lately. I visit the thread more often than I post so I do think of you all fairly regularly. xx

@bigbus,just read your recent thread. My eldest DD had anorexia and what you said sounds very familiar, our GP was also completely useless, but keep taking her and try a different GP within the surgery. Ours was also hung up on charts , at the time she had lost weight rapidly ,period stopped but GP said she was just within normal bmi, they weighed her with her coat and doc martins on!- So make sure that doesnt happen!
But my DD was eventually seen by school nurse,who referred her to early help,who referred her to cahms by which time she weighed 5.5 stone and hadn't had a period for 8 months .
So i would recommend asking the school for her to be seen by school nurse and also ask if they can also refer to early help for eating issues.
Try to ensure she eats breakfast and dinner with you and if possible lunch , Beware of her saying she's not hungry/already eaten/ becoming picky and faddy about foods. Just keep.pushing for help, i took my DD at least once a month to GPs sadly they often dont want to help until the the young person is seriously ill, its heartbreaking and i really hope you get better luck , do try another GP and take it seriously, periods stopping is a big red flag

Dear All thank you for the welcome back - sorry to hear things have been up and down for most. Thanks @Stilllivinginazoo for keeping this going and not minding the big gaps in contact!

@Runnerduck34 thank you so much. It’s so hard to get help when the child is a normal weight and won’t accept help anyway. I work in Mental Health and sadly I suspect it’s the latter issue that will cause the most problems. As long as DD1 doesn’t have a life-threateningly low BMI, has capacity and refuses help then I guess there is little realistically they can do. I have to watch her like a hawk and she eats 500 calories a day currently. This makes her very grumpy but it’s better than nothing I guess.

DD2 who is 12 is a real struggle at the moment - although showing some signs of recovery. I got myself into a really bad situation where she was refusing to get up and go to school and I ended up spending an hour + each morning begging her to go - sometimes she would still be in her PJs 10 mins before she had to leave. She would be screaming at me, lashing out, turning her back under the covers. I’d be dreading the mornings even the night before. Eventually I was late taking DS (9) to school one day and he was really upset so I knew something had to change. I don’t honestly know how it started - she did have to go to ‘keyworker’ school for a bit in the summer term and things weren’t great then either but they got really bad in September. After autumn half term I told her no more shouting and begging. I’ll wake her up and leave her to get dressed and then we can have breakfast together. I also did a large amount of love-bombing. In the end there was a day when she didn’t go to school but I guess she was pushing to see if I meant it. I did talk to the school at that point - there was some sympathy but also threats of me being hauled in front of an attendance panel. Anyway, mornings were better before Christmas and now this lockdown again! The problems have transferred to night time where she gets upset that she can’t sleep then wants me to sit with her but then just shouts at me. A lot of it seems to be related to getting my time and attention and I have been giving lots of extra time when I can - she likes baking for example but then she ends up angry and yelling when things don’t go her way. She does apologise later sometimes. She’s rude, grumpy, shouts and throws things and is also mostly agoraphobic - so tier 4 doesn’t help. She doesn’t seem to have any interests except baking which makes her angry, colouring which also makes her angry if she doesn’t get it exactly right, and screens. I do remember DD1 was v difficult at this age and is much better now and I’ve got the book ‘Get out of my life but first take me and Alex into town’ which reminds me that teenagers/preteens can be a nightmare but it doesn’t mean they’ll stay that way.

Sorry for the long ramble - I think the thing I find most difficult is that she just seems unhappy all the time. Maybe that is just part if the transition from child to teen?

Thanks for listening! I hope we all have a better 2021!

bigbus it's definitely familiar of all of mine,so may well be a transitional behaviour!!I found taking them for adecent length walk and chat worked as was burning out the aggressive tendancies and giving us "quality" time.lil zoo hates walking on its own,so she bought her phone to take photos,D's likes to look for specific things(bird species etc) dd2 is learning mindfulness and likes look anything that pleases her asthetically or offers sensory opportunity (in summer was barefoot in grass,dip toes in cold running water.now it's touching ice covered leaves,feel of moss,rough wood bark,smell of damp earth etc).just an idea?
On weight issue if you are able to find a weight chart(in red book?) And you can record weight occasionally dietetics will intervene if she drops two of the lines(when D's struggled gain weight I was told this is enough to be a red flag)
Capacity makes everything harder,esp as camhs won't offer support if they don't want it.like going round in bloody circles..lil zoo refusal to eat on school days is seen as "willful" if we can get her ASD assessment underway(school are dragging heels)I wonder a statement will make any difference
Viking you know the score,post when you like,visit as often as you feel the need.i think of you often and your boys
Runner I'm sorry things are so difficult.i always felt like I was being too pushy as I kept pushing at doctors,it's hard trying to secure support.have you other DC?do you have any real life support for you as it's incredibly draining being the sounding board of a distressed child and clawing desperately for SOMEONE to listen and help

Hoping skip is doing ok.i Denver her saying one of her DC might be in hospital.if you see this lovely and can't reply,we are thinking of you all

bigbus, sounds like we have similar DC.
DD1 had anoerxia from age of 15-18, but she is now well and at uni but it was a really rough ride and her anorexia life threatening at one point, but thankfully is now well and happy. When my youngest DD now 13 is having a very bad day with anxiety I cling onto the fact her elder sister did eventually become well and that she will too.
DD13 has no problems with food but has always been an anxious child and it got dramatically worse about a year ago around puberty. she started to refuse to attend school. barricading herself in her room etc, she became very withdrawn didnt want to see friends or go out with us. Since September she has been attending school for the afternoons only , usually 3 times a week but staying in learning base/sen area rather than attend lessons, its been really hard, the morning stress of coaxing/pleading and sometimes shouting to get her up and dressed is awful and I also go to bed with that sinking feeling of what the morning will bring. She is on waiting list for ASC diagnosis and for help with anxiety with CAHMS. After our experience with DD1 who became very seriously ill before any help was offered we paid for DD13 to see private child psychiatrist who prescribed setraline to see if will bring any relief and provide enough of a chink in her armour to work with as at the moment she is stonewalling any help or suggestions.
Christmas has bought a welcome relief with the pressure off but its all about to ramp up again, online learning is a disaster she does nothing, gets stressed and anxious about doing it wrong, procrastinates, gets behind which then makes her more anxious,and of course she hasnt been in lessons since september so has had no teaching to support any online lessons set anyway.
I am going to look at applying for dsa and echp which another poster suggested earlier, looking back I should have applied for these for her elder sister too but it never occurred to me.
Happy new year everyone, lets hope its better than last year

Viking lovely to 'see' you.

Anne fingers crossed the LA agree to assess.

Runner if DD2 can't attend school full time the LA should provide education. Part time timetables are illegal unless it's short term working towards reintegration, whether or not parents agree. They are often used instead of providing adequate support. DD certainly meets the EHCNA criteria. It is DLA you want, DSA is for university students.

Online tutoring doesn't work well for DS1 either, he can't cope with it.

Big it's good to hear from you. Don't worry about the threat of fines for DD2. IME as long as you are working with them EWOs are supportive. There's a thread in Eating Disorders for teens with EDs. I lurk as preteen DS1&3 have EDNOS. Some posters have DDs with normal BMIs but deranged bloods, abnormal obs or rapid weight loss. Can you approach the GP with the Marsipan checklist and push for referral?

Food concerns seem to be a common factor on here. Despite 3 meals/3 snacks and overnight feeds DS1&3 bumble along at or off the bottom of the charts. DS2 isn't much heavier. Some days seem to revolve around planning, preparing food and clearing up. I've become adept at hiding calories.

Thanks Zoo. DS1 was in hospital overnight prior to Christmas then finished treatment at home. It's relatively calm here, but there's been very few demands on DS1 which is always easier. The biggest battle is getting him out of the house daily even if it's only the garden. Always ends in meltdown.

skip is this covid induced or was getting him out a problem before too?sounds very hard
We crashed and burned at xmas.lil zoo has to SI from 21st.dd2 freaked out and left bedroom to sleep downstairs with me.fs kept nervous checking on her so had to SI too.both he and dd2 have severe health anxietyonly blessing is lil zoo likes own company and we discovered Google meet easier than any other virtual set up and kahoot was highly entertaining!9 girls dropped that we know of in her class,all her friendship group of 6,most found out when adults dropped in family as had a runny nose or no symptoms at all.only one had a classic symptom-loss smell.one mum we know had child tested with just runny nose as she has hodgkinsons.tested positive.mum followed 3dats later along with dad (Xmas Eve).she's had hospital check and now slowly on mend..
We did Xmas on 30th after both lil zoo and dd2(at own insistance) did covid postal tests.both negative
Dd2 MH deteriorated considerably.angry, argumentative etc on top usual stuff.could start Prozac yesterday but can't cope prospect gut pain etc again at mo.constantly already saying tummy hurts.i think highly focussing on it and can't stop iyswim.refused engage last chilled before Xmas at camhs.arguing won't attend this week.arguing won't attend online school today.im beyond exhausted.slep pretty much first 3dats lil zoo SI.my energy and motivation are gone

New year's resolutions aren't big for me,but I recognise this year I have to look after myself better so self care is my mantra.sliwing down and having a rests ok

Sorry for the essay
.hope news of lockdown isn't freaking everyone too much

@Stilllivinginazoo that all sounds pretty overwhelming, you must be exhausted! I find that the relentlessness of it all can be suffocating at times. There’s no way out. I referred myself to local IAPT and am having some counselling which is helping but it’s online of course - video calls - and now the house will be full up again so it’s hard to feel like it’s a safe space with little ears all over the place! I do take myself off to my room and tell the kids it’s a work call and DH knows to protect the time for me but it’s still tricky but I do think it’s helping. (It’s mostly focused on issues with my mum and my childhood but it has a knock on effect)

DD2 is happy with lockdown but there’s likely to be some live lessons which freak her out. I think she’s going to have to try them tbh. She’s managed to go to sleep last two nights without me in the room so that’s a massive improvement and at least gives me an hour or two of grown up time in the evening. Sometimes evenings just feel like such chaos with DD1 refusing to eat and screaming at me, DD2 screaming and throwing things at me whilst not wanting me to leave and DS just can’t sleep. We’ve tried talking books, sleep stories, meditation and now a weighted blanket but he just never sleeps before midnight. He’s back to school today with a keyworker place so that might help.

Wouldn’t it be nice just to have one day off!

I like you’re New Years resolution Zoo please try to make time for yourself. Mine is to stop worrying about what other people think of me.

bigbus it's hard isn't it?
We have sleep issues too.ds doesn't settle this side of midnight
Dd2 panics in evening,so settles eventually(could be 11,might be 3am)
Lil zoo awake til at least midnight.at least one or two X a month doesn't sleep at all at night and is up 7am till 11pm the following night!
Lil zoo and dd2 both hate live lessons idea.ive spoken to our link at school.theyre allowed camera off as and when nec.could this be an option for you?

Big have you considered melatonin for DS?

Zoo that sounds difficult. I hope you do manage to look after yourself this year.

DS1 has hated leaving the house since his MH problems started. We have always insisted he gets out of he house daily otherwise if he falls out of the routine he would never leave the house. However, with shielding and naturally going out less it has become more difficult.

As well as eating, sleep problems seem to a common factor on this thread. DS1 is as bad as ever. I'm praying the sleep clinic will be able to help.

Having the camera off and on mute is how DS3 copes best with video calls. DS1 struggles with them full stop, he needs F2F teaching. Prior to Covid it was already in his EHCP, and why he normally has F2F tutoring rather than internet school. He also learnt he could disconnect when things were emotionally difficult.

skip D's has a tendancy to claim battery has died in laptop when he's had enough online...
I've had a call that they are having to clump all learners together online for lear ing.ds will not tolerate this,he didn't last time as most opt to mute each other it mess around...will need a plan b as I've no confidence they can meet his needs,they aren't currently tbh..he had school report end of Xmas term all glowing engages well tries hard etc...I asked teacher yesterday(when they were still expecting in person teaching with 2x lateral tests a week for majority) how he would be ever able sit GCSE when only gets a couple key stage 4lessons a week....

Zoo why on earth are teachers allowing pupils to mess around muting each other! What does DS' EHCP state - does it specify class size/what he should be taught and how frequently? And are GCSEs specified in the outcomes section? Depending on the answers you may be able to force them to provide more/smaller class size. Where are you with appealing?

I wasn't impressed the first time DS1 disconnected. We had words.

It's still in progress now ed psyche has been asked tighten her vague recommendations and the results of ASD are being added
Today is painfully shambolic
We have had pe,with no other attendees(9were ment be there)
Maths(just talking,teacher said loves circles)
English reading skellig(9-12 yr old book)
Science- rubbing hands together to show friction
He's now ment to be doing literacy.
I'm losing will to live.i understand it's got to be accessible to all learners but it's boring me to tears,and he's fed up too

If class size and content/level/frequency of teaching are specified you can threaten the LA with Judicial Review. It is the LA who are responsible for the provision in the EHCP and they would approach the school.

I agree, Skellig isn't suitable for a Y10 pupil capable of passing GCSE English. DS' are primary age and have all read it.

I really think you should forget mediation and just appeal. If you had submitted an appeal when the EHCP was finalised you would have had the tribunal by now.

Sorry to hear of the sleep issues. Melatonin really helps us but when she is highly anxious she can refuse to take it. Either way she is frightened to sleep because of the ptsd so I have to stay with her at least an hour, often more to help her settle.

Dd is going into school. Only one in her year. She has her full time TA now. She was so anxious on Thursday we had to get the TA to call her and encourage her in. On Friday she did a couple of hours but was so exhausted they called me to collect.

She is about to try sertraline again. I am really hopeful it will help as she is in such a dark place

AnneI cannot get dd2 to engage with chilled group at camhs(2nd week running) she so out of it won't consider Prozac that's available at pharmacy she cannot make any decisions about anything,just yells at me even basic stuff like do you want a or b to eat...
I'm no longer on top of things.exhausted,tearful and depressed I've no motivation and haven't step foot outside since Monday,I've no desire to either and am actually quite anxious about needing to go food shopping tomorrow

Sorry to hear this zoo
I have recently increased my own ADs so I know how you feel. Dd takes up almost all of my time.
Make sure you are taking care of yourself and doing one thing for you every day.

How's homeschooling going for everyone?

Youngest is fine
Dd2 having huge panic attacks,but trying to get some done
DS finding it very tough going

@Stilllivinginazoo sorry the home schooling isn't going well.

It's not too bad here but I'm wish we knew for certain how they're going to grade GSCEs as the uncertainty is causing some anxiousness in DD. She actually likes home schooling as she doesn't have the anxiety triggers that actually being in school provides. However, the longer she is out the harder it is to get her in.
We're up for a review with the psychiatrist and CAMHS but our CAMHS lady is off sick. Her meds have really helped her mood but she says her anxiety is a bit worse. But I don't know if that stems from corona.

Five it's quite likely.ds and dd2 health anxiety is through the roof!
Dd2 hasn't attended camhs chilled anxiety group for 2 session.i haven't either as she will stress if I do and she doesn't,I'm learning nothing new and I've not got the mental resources currently for the effort for no return.she has heard nothing from alleged keyworker,despite there being no contact sine before Xmas.i suspect they will offload her as not engaging leaving us up the proverbial creek without a paddle

Five hopefully more information about GCSEs and A levels will be released soon to relieve some the uncertainty. Anxiety surrounding it is understandable and is bound to exacerbate existing MH problems.

Zoo I hope you are looking after yourself. You too, Anne.

Not too bad here. DS3 prefers home to going to school - quieter, less need to communicate. DS2 is, quite frankly, lazy when it comes to school work. Does just enough to get by, but there's always a distraction - I've had to limit the hot chocolates, it was getting ridiculous. He misses physically seeing friends and clubs again. Despite DS1 growling a lot today he engaged pretty well.

As part of DS3's ELSA he is making a worry tree. DH suggested DS1 could make one too, until I reminded him last time I thought DS1 could join in DS3's emotions bingo game it ended in tears all round.

Hello. I am glad I found this thread, but sad so many children and families are going through tough times. I think my daughter, almost age 11, is high functioning ASD. I have read recently that there is a history of late diagnosis for this. We are just starting CAMHS support for overall anxiety but would love your thoughts on whether her behaviour is familiar to you guys with other high functioning ASD girls. She has suffered from massive seperation anxiety until recently e.g. no sleepovers, camp etc, prone to mood swings e.g. almost manic to very sad, finds it difficult socialising (though has made friends), very fussy about textures of foods, particularly fruit, the feel of certain clothing and particularly footwear, obsessive about computer gaming. Also until recently fear of water so that had to wear goggles in the shower. More recently she says she feels depressed, and has developed a complete horror of loud noises such as the hoover and has started wetting the bed. All this and she has won a place at a prestigious grammar school. What do you wise women think of all this? Thanks so much for reading. CCx