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Parents and carers of anxious kids/teens(part5)

1000 replies

Stilllivinginazoo · 08/11/2021 06:43

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

OP posts:
cheeseismydownfall · 16/11/2021 17:52

Sirzy, I'm glad your appointment went well, that sounds positive.

After quickly saying hello yesterday I thought I would come back with a bit more background about DD(11). Thank you for asking about her.

The short version is that she is struggling with emetophobia and also general health anxiety, and has been for months (years?). I think the emetophobia came first - it seems to vary which is the most dominant, but right now it is definitely the emetophobia.

Yesterday was awful, the first time she couldn't manage to get to school. She was so anxious, poor girl, and of course the anxiety was making her feel sick which meant the emetophobia was in overdrive. It seems to have escalated so sharply over the past few weeks and for the first time I am genuinely scared about where we are heading. From what I have read, emetophobia is one of the most pernicious and difficult to treat phobias and many people never recover. It is so frightening.

I'm just so, so sad for my little girl. She was (is) such a kind, loving, funny, bright, creative little thing and this illness is slowly taking over by sapping all the energy she used to have for other things. Although she masks it well, I can now see the strain in her face and in her voice that she is battling so much of the time.

We are five sessions in to working with a clinical psychologist. She seems very kind and friendly, although in between sessions the admin side of things is pretty poor (getting the dates of appointments wrong and having to be reminded, repeatedly asking for info I have already provided, missing a third of a session because zoom not working at her end etc - there have been other issues too but too long to go in to). Fortunately this doesn't affect DD because she doesn't see this side of things, but it doesn't feel like a great start. Also I am concerned because she doesn't specialise in emetophobia, and from what I have read it is something that needs really specialist treatment. But I feel we need to give this a chance first.

After the initial assessment, the psychologist said she may want to refer her for further assessment at some point (for autism etc) I felt she asked DD some quite leading questions e.g. if she is bothered by labels in clothing - DD looked a bit confused said well yes, sometimes?, and the psychologist really latched on to this and translated it into full-blown sensory issues in her assessment report, which is categorically not something I've ever seen any sign of, ever! And although she is quite quiet and shy at first, she forms strong friendships (thank god, this is something I am very, very grateful for) and is very socially astute. That said, I am keeping an open mind.

Someone asked if I have support - thank you for asking - relatively speaking I have good support in a good marriage with DH (he dad) who would do anything for her/us. And we are financially OK which I do appreciate makes more options available sometimes and I am very grateful for that. I do feel though that the mental load for all of this falls almost entirely on me - he is a great supporting player but everything - from first realising there was an issue, to researching what was going on, getting help from the GP, arranging the referral, looking for extra support, advice, books, ideas - all those hours spent worrying and learning fall to me. And that is fine when it is booking a bloody holiday but right now the responsibility of advocating for her, helping her, is very heavy and I need more help. But it is so hard to explain that to someone who has no idea of just how much work goes on in trying to understand this whole new world we are navigating.

God I have rambled a bit there. Thank you to anyone who listens to all that! It would be really good to connect with anyone else who is dealing with emetophobia specifically.

cheeseismydownfall · 16/11/2021 18:05

Just came back to add that one of the hardest things so deal with is the fact that we probably bought this on her :( We lived overseas for a few years when she was younger so in the end she went to four different schools during her primary years. She seemed to cope so well and was so easy going about the whole thing. We thought the whole experience would stand her (and her two brothers) in great stead in the future and it looks like we were very, very wrong. I wish I could go back and change that decision.

Sirzy · 16/11/2021 18:07

Don’t blame yourself, even if things like that have contributed you can’t go back in time and change things and everything you have done you have done because you thought it was for her best.

I have spent ages looking back thinking what I could have done differently but eventually realised that we can’t control everything and we can’t change what has happened

alwaysscared · 16/11/2021 21:00

@cheeseismydownfall I have severe emet and have since I was about your daughters age. I kept it quiet for years so no one knew I needed any support. I am now in a very bad place with this that has also brought on OCD but it is because it is very intrenched in me for many years. Try the Thrive Programme for kids/teens, there is a lot of positive reviews for this. I tried it for adults but I think I am too far gone.
What I suggest is that you try and get some treatment with someone who specialises in this as soon as you can, and keep talking about it, normalise it.
My DS unfortunately now shows signs of emet and it's awful, I cannot imagine him living the life I have. That's why I am trying to sort treatment now.
I hope I haven't scared you, I think people can and do recover for emetophobia, and I hope that I will too one day.

Stilllivinginazoo · 17/11/2021 06:38

cheese hindsight is a marvellous tool for beating yourself up with.please don't allow yourself to focus on that
We have had emet suffering children here before,who use all kinds of tactics to hide/manage it.it is a hard one but not impossible.(also the fact you are aware of it at quite a young age is hopeful as it's often hidden well into teen years,for some adult hood)
Glad your husband's supportive.im not bashing men at all but it interests me that in these kind of circs they can be fab with practical stuff but managing the emotional loads not so much
Alwaysfor reference is the thrive program CBT based?

OP posts:
alwaysscared · 17/11/2021 13:03

@Stilllivinginazoo I guess it is in a way. It's a book that you work through

Sarahlou63 · 17/11/2021 17:58

Don't know if this is of any help to anyone here but in case it is...

www.amazon.co.uk/dp/1739811801/?fbclid=IwAR38_n2OLNfAnOPSoJntVSpMKSSySRNkHWX7uMP_lPUrwrRTc_fh9Lr7cHw&tag=mumsnetforu03-21

1leapforward2back · 17/11/2021 20:24

Cheese the others are right. We all have regrets but 'what ifs' don't help. How has today been?

Zoo The Thrive Programme isn't a form of CBT. Here is their website explaining it.

I don't know whether anyone else here saw the recent threads on the Child mental health board about some MH programmes/coaching, so do your research before signing up to anything.

DS1 had a complete meltdown at the hospital today.

alwaysscared · 17/11/2021 21:16

With Thrive, you don't have to sign up to anything, it's a book that you work through.
It didn't help me so I worked with a consultant and that cost a fortune and it still didn't work, but I have heard a lot of positive stories.
I have read the book three times and it's about changing the way you think and behave about different things.
For an emet, I think it's worth getting the book as it could help.

1leapforward2back · 17/11/2021 21:33

Always You can see from their website The Thrive Programme do offer coaching for £895 for a 6-8 weeks programme. You can become a coach too. Similar in set up to the companies discussed on the threads in Child Mental Health.

alwaysscared · 17/11/2021 21:43

They do offer it, but you don't have to do it. You can just buy the book
Like I said, I had a consultant and it was ridiculously expensive and didn't work for me, but the book might help people

alwaysscared · 17/11/2021 21:45

I am in no way trying to sell people this, I just think it was a good book that could work

1leapforward2back · 17/11/2021 21:55

Always My post didn't state you had to sign up to the coaching, I stated they offered it and I was warning others about the practices of some companies in case they hadn't seen the other threads on the subject.

This extract from their website is incredibly similar to the marketing of the companies discussed on the other threads. Effectively the programme doesn't fail, if it doesn't help the problem is you.

"It’s not possible to ‘fail’ at the programme!...If you take the knowledge and apply it to your life - you will love your life. The only time you may feel like you have failed is when you aren’t putting into practice the activities, or are not fully understanding how to make these changes."

alwaysscared · 17/11/2021 23:33

Ok, sorry I mentioned it. Was just trying to help

1leapforward2back · 18/11/2021 10:17

Always you don't need to take it personally, I wasn't saying don't post it, just highlighting the practices of some companies and the recent threads so posters can make informed decisions.

Runnerduck34 · 18/11/2021 10:27

Interesting to hear about thrive as that's the program offered by the EOTAS provider that we are trying to get via tribunal.
Generally I think there's a lot of pressure on parents and kids to try various techniques and programs and if it doesnt work you often feel you haven't tried enough or done it properly and professionals can certainly make you feel like this.
DD is so resistant to any mindfulness or relaxation technique,even when she's in a relaxed state she just refuses to practice it.
She has been sent worksheets by CAMHS that she refuses to do, I try and fill them out next to her, schedule ( which she finds anxiety provoking, sees it as a demand ( she has pda traits) , "what made me happy today" which she rolls her eyes at etc no chance of getting her to do square breathing or name 5 things, it's just so hard and as a parent you will try anything you can to help your child, anything to stop feeling so powerless in it all.

DD didn't manage taster days at specialist school, so at least we are now clear EOTAS is the best route forward.
"Just" have to fight for it!

She hasn't been in school since September, we kept her off since week before October half term in an attempt to try small steps and get her in a better place and to take the pressure off trying to get her in every day.
I'm the meantime the LA have conceded specialist school but haven't named one.
Appeal date is in February, so what do we do in the mean time?? should we try and get her into her mainstream school or accept she won't be going back there- ever?
Any advice or experience greatly received!
She doesn't care about not going into school, she was on a part time timetable and has missed so much so possibly academically it pointless as she normally just sat in sen area. But I am worried about her not leaving the house, seeing friends etc. It's made harder by me and dh working full time and therefore not free during the day to get her up and out. We work from home but other than popping in every hour or trying ( and failing) to do something with her at lunchtime she's on her own. Yesterday during my lunch break I thought if only I didnt have to go back to work I might have been able to get her to do something but as soon as she begins relaxing and becomes more chatty my hours up and I have to go back to work 😔

1leapforward2back · 18/11/2021 10:53

Runner sorry DD didn't manage the taster days. I would accept DD won't attend the current MS. She isn't gaining anything from continuing to try and fail, that alone is likely to be detrimental. I would focus on building your case for tribunal. Is DD receiving medical needs tuition? Does she have a special interest?

Would it be possible for you or DH to take some parental leave?

Is it The Thrive Programme or the Thrive approach? Different things, the latter is often used in schools and APs - their website is here.

alwaysscared · 18/11/2021 18:21

What do we do now? DS will barely come out of his bedroom, he isn't eating. He is anxious all the time, the only thing that makes him slightly better is his iPad. I've spoken to the GP who has done an urgent referral for sleep and eating but what do we do while we wait? He is losing weight and looks so poorly.

Sirzy · 18/11/2021 18:41

Is he drinking always?

Ds had a massive meltdown when he came out of school today. Apparently he had a good day but my bruises suggest otherwise. When he comes out with comments like “I don’t deserve to live” and “I shouldn’t be on this Earth” I just want to cry and no matter how much I tell him otherwise he won’t hear it.

alwaysscared · 18/11/2021 19:10

He is drinking, and just had a bit of dinner. I'm so worried about him

alwaysscared · 18/11/2021 19:11

@Sirzy we get those comments too, everyday. It's so hard to hear isn't it?

Runnerduck34 · 18/11/2021 20:31

Thanks leap, I have thought about applying parental leave, Its for a max of 4 weeks, unpaid, tbh I think it will take more than 4 weeks. Its certainly something to consider.
She isn't getting medical needs tuition, school applied mucked up application, reapplied, were waiting to hear. I was told in our area all DC with MH needs were being turned down , although this has been recently challenged. So wait and see.
Not sure which version of thrive it is, will try and find out.
@alwaysscared @ sirzy I'm so so sorry everything is so so difficult right now, I found when oldest DD was ill ( now thankfully OK) that positive affirmation helped, I just kept saying you are smart, you are brilliant at art, you have gorgeous curly hair, you are a kind friend etc etc she totally rejected it at first and tbh it felt a bit contrived but I kept saying it I think slowly broke through and helped her self worth so keep at it sirzy at some level he will be listening. Also talk about the future, is there anything he'd like to do ?
It sounds like it is taking everything out of him to cope at school then he takes it out on you when he comes home, it's not easy. Does he have an EHCP?
Always, so pleased he has eaten something, is he at a healthy weight? watch out for drastic weight loss.
It's good GP is helping, is it worth phoning emergency CAMHS duty team? Is he on their books or waiting list?
It maybe worth seeing GP yourself, don't estimate the toll of caring for DS on your health, you are such a lovely caring mum, look after yourself too.

alwaysscared · 18/11/2021 20:58

@Runnerduck34 he is on the CAMHS waiting list, and we have phoned crisis line many times. He is a healthy weight but definitely losing at the moment
I have an appointment with my psychiatrist next week because I need to change my meds so will discuss it with him

Sirzy · 18/11/2021 21:50

He has full 1-1 via his ehcp, she is lovely but he is in his first term at high school so he has gone from an environment where they not only understood but often the centre of of attention to a new school who I can’t complain about at all but he obviously isn’t the priority for them in the same way

Runnerduck34 · 18/11/2021 23:10

Sirzy, change of school is always very difficult, add puberty into the mix and its a nightmare. Really good he has a full time 1:1, is he in mainstream? Could it be the environment that isnt right for him?
Always, I would just watch he isn't losing weight rapidly. Do take care of yourself.
Let's hope tomorrow is a better day for everyone

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