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

Thanks 1hop, she got worse yesterday so we went to the walk in, I think the bulk of her problem was anxiety, she started out feeling ill and in pain and then got so anxious she stopped eating and drinking so she spiralled downwards, they gave her medication for the pain and suggested she needs to look after herself and today she is starting to feel better, we followed up today with a GP phone consultation which was really good.

dispair youngest here gets stress migraines and guy pain that's had here sent hospital in past with suspected appendicitis..horrid to watch them going through.we try get her doing relaxation/breathing etc.not always works.shes been picking skin around fingers pretty badly so plan put gloves on her today and plenty antiseptic as don't want infected fingers adding to the fun and games
Onehop he loves cashew butter and avocadoes.he will eat cashew,hazelnuts,almonds.dd1(different dad) has peanut and tree nut allergys and sesame too so it's been long haul get him try nuts at all.hes afraid peanuts even though dd1 never had attack since had epi pensI've heard coconut oil can be used to sub in some things for nut butter and sunflower seed butters nice and can be swapped in too

Dd only liked 1 milkshake flavour 1hop. We tried loads. And now she has gone off that.
Sorry dd is unwell indispair

Slightly better day today as I didnt push schoolwork. She is very needy at the moment though

Indispair, sorry to hear DD deteriorated, but I am glad she was seen and you've had a GP appt as well. I hope she's feeling a little better today.

Wow Zoo, I wish I could say the same about not needing the epipens. DS' have needed them a few times, especially DS1 who has a long list of allergies. With coconut not being a nut I tried DS' with coconut oil and DS1 tried coconut yogurt but none of them like the flavour. We tend to stay away from seeds because DS1&3 are allergic to sesame and poppy seeds and DS1 to mustard seeds. DS1 picks his skin too. Make sure you tell CAMHS about it because DS1's team view it as self harming.

Anne, she could try the juice based ones. They aren't as good because with not being milk based they don't have the fat content but do have calories, protein, vitamins. She could also try a low volume concentrated supplement. Some are milk based but not the same as the milkshakes, and obviously there's less to drink for the same calories/fat.

DS' are just finishing Joe Wicks' PE lesson. DS1 needs a lot of encouragement.

Just given an email with the selection of school they've chosen for D's EHCP.not even on radar as an option.out of county.know nothing of it,not sure how to proceed forwards so will contact Sen support services tomorrow

Onehop interesting picking seen as self harm.will flag that up

Zoo, sorry to hear that. Did the LA consult with the school you requested?

If you disagree with the school named, appeal. Don't bother with mediation, just get the certificate and go to tribunal.

Look at IPSEA and SOSSEN's tribunal advice and get a phone appointment. If you do go to tribunal SOS SEN may be able to help with preparing some of the evidence and the working document. If they can't help you IPSEA have a tribunal phone line, and sometimes have volunteers that can help with the tribunal process.

What are the assessment reports like? Depending on what they are like, if you plan to go to tribunal you may need your own doing. If you need IPSEA will be able to tell you who does tribunal work near you or post a thread in SN section.

You probably also want legal representation. Again, IPSEA will be able to help or post a thread on here for a recommendation.

You need to appeal section B and F as well because they will be written to support a placement in the school they've named.

If you plan to appeal whatever you do don't miss the deadline - 2 months from date on the decision letter or 1 month from when you get the mediation certificate, whichever is later.

DS does it when stressed, it doesn't help his eczema. Skin picking can also be related to OCD.

It's been a good day here. Once started on tasks DS' have worked fairly independently today.

Sorry about the school Zoo.
My dd picks skin around fingers too. As well as leg scratching and during meltdown she has started punching herself in the head which is very distressing to witness.
She has had a good day, so I am grateful.

I tookine out for a walk yesterday.firsf time managed get D's out door in two weeks!we walk old unused railway line that's now nature reserve.lots fields and near river.we saw DUCKLINGS which was lovely,D's missing see lambs this year,so that cheer him.sadly he overheard Sen from roll school talking of school and has been freaking out since yesterday.hes convinced can no longer swallow melatonin,and that's now a self prophecy...
He's fought everything today,schoolwork,routine.exhausting
Talking to sen support services tom

Thanks for your help everyone, dd is feeling much better now, I think just the fact someone was listening and offering advice helped her, the doctor was really good, plus the fact that all her GCSE work has finished is helping. She has spent today making masks and we’ve had a really nice walk, and she has said she’s feeling much more relaxed.

It’s interesting about the finger picking as this is something I’ve done for as long as I can remember, sometimes (like recently ) my thumb is constantly bleeding, as dd self harms it is good for me to remember this and I will try to stop it.

Anne, I hope today was also a good day. I find DS1's self injurious behaviour one of the hardest parts of his MH problems, I also find it hard not to show DS my feelings about it.

Indispair, I am glad DD feels better.

Zoo, ducklings sound brilliant. Sorry DS is having a rubbish day. I hope he can be coaxed into taking melatonin again, but if not there are liquid preparations.

DS1 skin picks when stressed but it's much worse if he's also got sensory overload at the same time.

I am very glad next week is half term, we all need a break from school work. I'm just hoping the weather stays OK so we can be in the garden.

Any advice for dd2...
Isn't settling to sleep easilynow night waking after vivid/scary dreams at least two or three times a night.shes exhausted,tearful and fearful of going to sleep as it's start trigger panic in the night

Hi zoo, sorry to hear your dd’s sleeping problems, how old is your dd. My dd (who is now 15) has always been a shocking sleeper and due to CFS got much worse, even now it’s not brilliant but I can pass on the tips we were given.

Have a really firm bedtime routine, we always did all tv and screens off an hour before bed, then we had a 20 minute chat which helped her get anything off her mind, followed by getting ready for bed and then I read to her, it made a really long bedtime but seemed to help calm her down (and yes I am still reading to her occasionally even though she’s nearly 16 ).

If they can’t get to sleep after say about half an hour then get up and do something, we always read again. If she woke in the night I also read to her, it was exhausting though and I spent many a day struggling to keep going.

Because dd was older they advised a later bedtime rather than trying to force an early one.

But saying all that she still ended up in with me nearly every night for months.

DD’s sleep has been up and down recently, because of lockdown it worsened again due to lack of routine , being able to sleep in and increased anxiety, dd bought herself a ‘healing bracelet’ ( don’t judge, she was desperate), and whether it coincidence or just her anxiety levels have reduced in the last four or five days she’s been sleeping better than she has for about four years.

Zoo, sorry DD2 is struggling. My advice would be to not let her sleep in, even if she's had little sleep, otherwise you get into a vicious circle. Also, is she eating late in the evening? Some foods can make people have vivid dreams. Is the sleep support you are receiving family based or just for DS? I hope you managed to talk to the LA re school placement.

Indispair, no one on this thread will judge you. Sleep deprivation is torture, and sometimes when desperate you will try anything. I certainly have with DS1's sleep problems. Whether it's coincidence or a placebo effect it doesn't matter. And if it is a placebo effect sometimes that is what it takes.

I'm having a down day today. I'm worried about what happens after June. I'm worried how we are going to get DS1 leaving the house again - he's going to have regressed hugely in that area, getting him into the garden is proving hard enough. DS2 descended into a teary mess last night because he is missing not going out. To top it off we should have gone on holiday today. I need to pull myself together.

Pulling yourself together says you feel you arefailing yourself onehop and you most deffo aren't.you are allowed feel low,have regrets and be sad when events pass without fruition times are unprecedented and our thought need reflect thatdd1 should've been having gen party this weekend..

Indispairno judging here lovely,if it holds you together for a while who cares what others think/say they aren't in your shoes

Thank tips ladies,we have firm routines no phone etc.iget her up by 8 everyday at latest.she likes dinner at 8 so might try earlier see that helps.
We were told referral was for D's only with sleep solutions

1hop I’m so sorry you are having a down day, the unknown is so scary and at the moment it feels that everything is unknown. I’m also sorry you are missing your holiday, these things can really get you down, we’re coming up to some theatre performances we’d booked , not huge but quite depressing nether the less.

In a way I’m lucky that dd has finished school and won’t go back until she starts college in September, but by then she’ll be going into a new environment so no idea what that will do to her, I’m just trying to be optimistic with her about the whole situation.

When dd was reluctant to leave the house earlier in lockdown we went later in the evening at first, when there was less people around, it can be quite magical later, although that was obviously before summer and light evenings.

Zoo, it's a shame the sleep help isn't for all the family. I suppose you've no chance of getting DD2 referred.

I know in the grand scheme of things the holiday doesn't matter. It will happen just later than planned, it's just the little things all add up, so I'm not surprised missing theatre dates are the same for you Indispair.

DS' are shielding so we won't be going anywhere for the foreseeable.

Sorry about the sleeping zoo. Has she tried melatonin? Might help her settle and stop her waking. You can buy online.
Although it seems to have stopped working on dd for some reason and we are faffing about until past 11 each night at the moment.

We have a long awaited initial camhs appointment tomorrow. Our gp told us not to talk about our private psychiatrist or they won't help us. But he is managing her medication so I need to. I'm not sure how to handle the appointment.

Camhs psychiatrist rang yesterday for a catch up.hes decided as D's convinced self can't swallow pills to try sedative anti Justine
I've been told trial it and after 4weeks he will ring and can sort script for it if necessary as it's over counter med...spoke to pharmacist and it's go cost £17.50 a week.....

Had camhs assessment today over the phone. The lady was lovely. She was considering anxiety, depression, trauma and eating disorder ☹
She is going to talk to her team and see about referrals for cbt or emdr and eating disorder clinic (but she wasnt sure about that one until she spoke to colleagues). She thinks dd is increasingly isolated and wants me to het her to reach out to friends. Not sure how that will go but will try....
Still not sure if/how this might work with our private psych bit I really liked this lady.

Anne I'm glad the CAMHS appointment went OK. If you go down the CBT route make sure the HCP is experienced in CBT in those with ASD. Many CAMHS won't keep a child on their books if you also go down the private route. Not being able to mix the two was one of the reasons I pushed for the level of CAMHS support we have.

Is DD taking melatonin every night? Or has she had breaks? I ask because some paeds/psychiatrists recommend breaks for those taking melatonin long term. Despite research suggesting you don't build tolerance levels some people find that they need breaks otherwise it stops working.

Zoo, won't they prescribe liquid melatonin?

It's all quiet here. I've been getting some emotional literacy/OT work that the school sent ready for DS3. It highlights how delayed DS1 is in emotional literacy because DS3 is delayed and DS1 couldn't begin to access some of the material sent.

Hi can I join please. DS 14 has anxiety and adhd he is most anxious when I'm not with him, if he goes with his dad he texts me every 15 minutes. At first I had to stay on phone to him constantly if I popped to shop for ten minutes and when I would go out once a week he would constantly be on the phone to me.

He is better now as in I can go to the shop for half hour before I have to go get him, when I am out he just texts me once a hour and stays up till I get home as he won't sleep without me here. He doesn't really see his dad so dk what's changed there. He doesn't get anxious for me he worries about his own safety when I'm not there I am trying to slowly get him used to being safe when I'm not there, but at least he feels less anxious when I'm there.

He also has severe anxiety around chemicals if I use bleach to clean he gets very anxious I have to reassure him that I have cleaned it off effectively.

He also gets anxious about germs he washes his hands too much and his skin can get sore he also bites his lips.

He went to shop with my mum yesterday and bought a few things for us but was anxious I would not want the things he bought my mother had to reassure him that I wouldn't mind him buying extra hay and black bags I never shout at him though so don't really get why he was anxious he had bought things I didn't want but I guess anxiety isn't always logical.

He gets anxious over his appearance as well.
But he is doing so much better and I'm so proud of him.

Gonna go back and read some of the thread to catch up.

Theodorebwelcome
That sounds very hard for you both
Do you get much rl support?
Has he had any professional input?
My D's is also 14 he has acute anxiety and being tested ASD.he clings to me.fearful of me dying,or not be able to care for him.he also fearful of chemicals.during this pandemic that's caused a LOT issues regarding cleaning and disinfecting things....

Can I join?
DD is 16 and really struggling. She’s been seeing a psychologist for the past few months who thinks she has PTSD and possibly bipolar 🙁
Psychologist thinks she needs some sort of medication so phoned the GP yesterday who won’t do anything other than refer her to CAMHS which he said isn’t really working right now and has an enormous waiting list. I don’t know what else to do.

Welcome Theodoreb and Sexnotgender.

Sng if you can afford it find a private psychiatrist who can assess, diagnose, decide treatment options and can prescribe medication if necessary. If not then go on camhs waiting list, and keep looking at support options

Thanks for the advice 1hop. We will see what camhs say in their letter following our assessment. Dd is having a meltdown every day at the moment and she is very low. I am kicking myself for not seriously considering depression. I knew she was sad but about it down to being linked to everything else and not at that level but it feels like the missing piece of the jigsaw.
However asd, anxiety, ptsd, depression, and an eating disorder is a long list for a little girl and my heart breaks for her :(