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

Camhs have accepted referral eating disorders community team for dd2 for September.they think her reflux/anxiety and eating are major intertwined

Thats really good news zoo, a breakthrough!
Though i am perplexed as to why they are waiting until September?!

Hi everyone

1jump - dd went back on sertraline after the fluoxetine made her worse. She is on 75mg at the moment.

Ellie - thank you for that about the ehcp. I spoke to school senco today and they are going to chase for me as I haven't the energy.

Dd is out of sorts at the moment. I think the focus on eating is not helping. We have so many issues - it just feels too complex to deal with

Zoo good news CAMHS appointment wasn't a waste of time. I'm also confused as to why DD2 needs to wait until September. Frustrating for you when you have been fighting for help from the ED team for DD3.

I don't know about you Anne, but we find some professionals don't see the issues interlink, they just want to focus on their one specific area.

They are "overwhelmed" at ED team due to both case rises and relapses thought to have been triggered by pandemic/lockdowns hence the long wait.lil zoo initial app was a 3 month wait but was bought forward a month as she was getting dizzy spells
We are at ed clinic today for weight/b.p etc and see medic about paranoia disclosure.she has dietetics tomorrow

I'm certainly not looking forward family therapy,grateful DD been offered whom wants attending and just said me...
Anne my memory is awful,was sertraline one that gave her stomach pain?which did she take after?I'm so sorry the complex nature of her illness is so draining.have you managed get a few minutes to yourself each day

How is everyone doing this weekend?
How did you get on at ed clinic zoo?
Eldest DD was prescribed both olanzapine and flurexotine for anorexia and the medication definitely helped. we had one session of family therapy which was painful, group family therapy was better in the end but awful to start with as unfortunately the girls compared and judged at first but did eventually support each other but it was a painful journey however DD is doing brilliantly now so they can and will get better .
Youngest DD is starting group therapy on Tuesday for anxiety with ASC via zoom. parents also invited to attend , DD reluctant just hope she will do it.
only managed school twice this week for 3 hours each time. Had a medication review and Sertraline has been upped again to 175 mg which is near maximum dose, was told if this doesn't help they may change medication. Just hoping she can turn a corner soon, school have suggested mainstream education may not be suitable for her, waiting on outcome of EHCP.
However today was a good day and she saw a friend for a couple of hours. Hope everyone is having a relaxing weekend 💐

Nice she saw friends runner
Lil zoo admitted had paranoia but that's been given a backseat as she's lost 900g in around 2-3 weeks
She's not underweight currently,just not disordered eating they said but now after that drop they are saying anorexia and meal plans.dietician rang Friday and asked questions about likes/dislikes and food choices/what current eating.said she's not having enough.suggested multivitamins specific for teen girls.i mentioned they're talking menu plan now,she said would speak to them and get back before days out with one.ED team rang at 4pm they need in-house dietician,not community one,to do plan.have email and will arrange a teams with them in due course.no idea how long that'll take and in meantime just continue as we are...
DS is struggling.school are giving online projects for the week which he completes in a day and is getting very stressed.going backwards with sleeping,he sees on loo hinge/ bathroom floor when not coping with stuff and is withdrawn and needing lots reassurance

Good morning everyone. Been lurking and feel grateful to be able to share here.

Another A&E trip and admission on Saturday night and Sunday morning after DD1 swallowed 2 cylindrical batteries. She's trying hard to stop self harming through cutting (nearly 4 weeks after the last episode). Physically she's ok as the batteries have passed into her bowel.

Spent from 10 pm to 8.30 am in A&E and then admitted. Signed off work for this week and likely to try and take a longer leave of absence.

DD2 is being stoic but it's so hard on her. DH has been carrying a lot of the load over the winter but has started a new job.

Sorry to hear that Tee, although a relief DD is physically OK and hadn't cut for 4 weeks. Time off work will benefit you all. Do you have a young carer's group nearby for DD2?

Runner I hope meeting friends lifted DD's mood, and there wasn't too much payback.

Zoo did you manage more sleep last night? ASD or not, DP should be helping you more, it's not fair you are caring for all 3 single handedly. Fingers crossed you aren't waiting too long for the ED team. Have you heard anything about DS' amended EHCP?

Family therapy was horrendous. DD2 wouldn't talk in front of DS'. DS1 had a meltdown and cried himself to sleep, DS3 cried because there wasn't any Lego in the room (at every other CAMHS appointment there had been) and DS2 was too busy talking about the HCP's tie (which, in fairness, was outlandish).

Just heard EHCP application was rejected. Very disappointing

Anne did you get reasoning why was rejected?I'm so sorry
Tee
Jumps alas,11hoirs over 4nights I don't know who I am or what I'm doing anymore!!

Anne- so sorry it was rejected, I'm fuming on your behalf, did they say why? will you appeal?
We are still waiting to hear back about youngest DDs ECHP

Tee- what a stressful weekend you have had, Im glad shes ok, well physically anyway, and that you have been signed off work. I think it will really help you both, dont feel bad about being signed off longer term, you must be under a lot of stress and first priority has to be your family.

I am silently fuming tonight, we have first group ASC anxiety session for DD tomorrow morning , its taken a lot of gentle persuasion and frankly bribery to get DD to consider trying it, its a group 8 families, originally was going to be a separate groups for teens and parents but CAHMS have just decided for parents and teens to be in same group and not separated, which is making it harder for DD, by chance 2 are girls attending are from DDs class, and we have just been told her school senco is also going to attend the group! It will be very difficult for DD to open up , to do so in front of parents, classmates and a teacher near on impossible, just have to hope for the best!

Zoo - no wonder you are full of resentment for DP, I would be too, I hope this doesn't sound harsh but im not sure exactly what he is adding to yours and DCs life other than extra stress. You are trying to cope with more than is humanly possible and doing an amazing job caring for your DCs.
Can you get any help from your GP? Medication, therapy or a support group? Do you have family and friends who can help-, perhaps give you a break sometimes.

Not sure how old you are but I have had trouble sleeping for a few years,, takes me ages to drift off and a colleague said the same happened to her when she was peri menopausal, I didn't realise it was a symptom of menopause. Of course you maybe in your thirties! and you have soo much to worry about atm that may not be relevant but just mentioning it incase something like HRT would help.

runneri think it's peri(I'm not a young bird!).I don't have any family except dd1 to help.me(she's 26)
No friends,just few acquaintances
It's always been like it,I dig deep and plod on!had 5 hours and feel bit more with it todayand may try and squeeze in a nap later

@Stilllivinginazoo @Runnerduck34 @1jumpforward2back thank you all. Home yesterday and weirdly calm.

I expect the next few days to be taken up with various bits of follow up and trying to gauge where DD1 is at. I'm expecting her to be out of school until after half term at least.

Trying to work out where she is at safety-wise - if in a place where she can't be left alone but won't leave the house I am dreading it. Especially because her mood is always much better when she does get out and do something.

She's ok with doing the DBT session scheduled for this week.

I'm feeling really conflicted about school. She was never at all avoidant until February last year when bullying came to a head. From that point in between lockdown, episodes and various accommodations she hasn't completed a full week since. I think that she finds the intensity of it (plus the tone some of her peers take) hard and is constantly anxious about what people are going to do or say. Plus lockdown meant that she now sees opting out as an option (though she may have been doing it a bit already on the down-low).

Do I start talking to school about an EHCP? There's only one more year for her there as no sixth form. She does do better in a structured environment and I'm worried about the social isolation that a prolonged period out of school brings.

@teelizzy, Im not an expert but yes I would be applying for EHCP assessment, you can request this yourself but its good to talk to school and get them onside.
Has DD got ASC diagnosis? In many ways she sounds similar to my youngest DD who has ASC and struggles to navigate secondary school and friendship

@Runnerduck34 thanks. No diagnosis of ASC and am not sure that's the issue here. She has good and stable friendships that she has made and kept through the transition to secondary school. She has quite a few sensory quirks - her comfort blankie is always needed even now and she finds loud noise very distressing. She has dyslexic type SPLD and part of that profile is slow processing speed so being singled out at school and asked a question is really stressful. So are tests and exams. What we think is she's way more intelligent than most people give her credit for and acutely aware of the limits her SPLD put on her attainment.

@teelizzy, dd also has a comfort blanket she has had since a baby-shes 14 and is very sensitive to noise, touch, bright lights. A year or two ago I would have pooh poohed the idea of DD being on ASC spectrum, she has always been anxious but does have friends, although sometimes she has felt "different" from them. she initially coped with transition to secondary school but started to school refuse in year 8, if she hadnt school refused I doubt ASC would have been suggested. Apparently Girls are very good at masking and so often ASC goes undetected, Im not saying your DD does have ASC but it may be worth looking into

@Runnerduck34 I do wonder. She’s acutely aware of the effect her dyslexia has on her academics and works really hard but struggles with organisation. The thing that worries me about ASC is that it’s another label which she’s likely to perceive as having negative connotations.

Today: she got up at 8 as agreed, ate breakfast, agreed that she would be safe if I went out for an hour for physio. We took the dog for a walk together and did some errands. She’s currently in bed noodling around on her phone. (I’m on MN so not much difference there )

She’s taken her meds (Citalopram) and has agreed she’ll do her online DBT session later. She’s generally looking after her personal hygiene quite well and is looking forward to plans we made for half term.

Putting that down in writing helps me feel more positive about where she is.

On the other side, I have to negotiate what I’m going to do about work. I find it hard that at long last lockdown is ending and I am with someone who just now wants to live her life as if it hadn’t ended.

DH and I have a restaurant table tomorrow evening and now probably can’t go as he is likely to be too anxious that she’ll harm herself again. As am I - she finds it hard to signal when she needs help.

Anne appeal, the vast majority are upheld. Many LAs refuse to issue as standard in the hope parents won't take it further. Don't bother with mediation, just get the certificate and submit to SENDIST. LAs use mediation as a delaying tactic, if they are going to concede they will do so regardless of whether you actively partake in mediation or just get the certificate.

You probably need independent assessments. Also, consider submitting SARs to the LA, school, previous school and CAMHS to gather evidence and see what's going on with the LA. SOSSEN can sometimes help with appeals, if they can't IPSEA sometimes have volunteer caseworkers available in addition to their tribunal helpline.

Tee getting up and going for a walk is a huge positive. I agree with Runner, applying for an EHCP is a good idea. They can continue until 25 if necessary. Speak to school but make the application yourself, then you know it is done ASAP not at some point in the future. IPSEA have a model letter you can use. If DD can't attend school the LA have a responsibility to provide education.

We went through a stage where DS1 was on arms reach care 24/7, it is exhausting. Do you have anyone to help you? Have you had social care assessments?

Runner has DD ever had a sensory OT assessment?

Jump, I haven't heard of that and no she hasn't, would that be part of EHCP process? Is it something I request, if so how/ when?

Thanks all. Reason for ehcp rejection was that they felt support could be covered in existing SEND budget. 🤔

Today dd has been diagnosed with arfid. We have been told by the ed team if she doesn't eat in 24 hour period to the her to a&e, she should stop attending school to conserve emergy! I have spent ages trying to get her in school so have pushed back in that as she has 121 who will look after her and keeps her happy.

Runnerduck - that group session sounds a nightmare. I would not take if school sendco was there.

Anne-that reason sounds like a cop out. Have you spoken to school? I think its worth appealing if dd isnt coping and school have exhausted the help they can give .
I agree to send her into school if she has a TA who can support her and phone you if necessary.

Group went well in the end, got dd downstairs listening in, out of camera range. she even whispered a few contributions to me.
Turns out Senco is only there because one of the girls is doing the session at school so shes there to support her, so can't really argue with that .

Anne that is clearly nonsense. A child who is not in school full time, has 1:1 when attending and isn't in class all the time when there can not have their needs met via the notional SEN budget.

Runner I'm glad the group wasn't as bad as feared. Sometimes the thought of things and build up is worse than the actual event.

Some CCGs commission sensory OT, but many don't. If yours does you can request a referral via your GP, CAMHS or community paed, some areas allow you to self refer too. I think your area offers a limited children's sensory OT service.

It can be part of an EHCNA and sensory OT provision can be included in EHCPs. If the LA agree to assess you should request in writing, any assessments you want. I suggest you ask for SALT, OT including sensory OT and psychiatrist &/or clinical psychologist.

Just wanted to jump on this thread and say Hi. Have been reading through your posts today as I am totally struggling with things at home and feel like I have found some people who will understand me.

I don't know if my 17 year old son is suffering with anxiety, but last August after being at home from school for months with nothing to do because of lockdown, he tried to kill himself. It was a total shock and to this day we have no idea why. He has never spoken about it at all - to us or any professionals. He just said that he would be fine and we tried to get on with life. He left hospitals with a couple of leaflets and that was it. We cant make him engage with CAHMS or the school counsellor, they said because of his age we cant force him to see someone. If we mention anything to him he just shouts and refuses to speak to us for days/weeks.
Does anyone else have a child who does not speak to them? He spends most of his time in his room and emerges for meals. He only grunts at me or give one word answers. He looks at me with pure hate and ignores me as much as he can.
School is going badly (first year of A levels) and I am almost certain that he will repeat this year. The first term he was totally down and in no fit state to learn, second term lockdown and at home again, back at school now but doing no work at home and did not do any revision for assessments. If I mention school or homework he just says "stop" or "go away" - end of conversation.
He had a meltdown on Friday and said that we all hate him (mum/dad/sister) and that because of us he hates himself and that he has had a terrible childhood. I am so gutted that he thinks this and also that I cant seem to do anything to help him.
Last summer our GP called around to the house unannounced after he came home from hospital but he just barricaded himself in his room and did not speak to her or answer any of her questions, so I know that forcing counselling upon him would be pointless or just make things worse. I feel like I am walking on eggshells all the time and it is just exhausting.
Just wanted to say out loud (or at least in print) that things are pretty shit here and I cant see anything getting better. Oh, and to make things worse for me, my daughter who I am very close to leaves Uni in June and is planning on emigrating to Australia in July.
Sorry for the long post. As a mum I've always been able to make things better - but not this.