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

I had to leave ds outside school with the teacher today, he physically froze and I struggled to even get him outside the front door.

They told me to leave eventually as I was going to be late for work, I haven't heard anything yet so am hoping they got him in, when I left he was like a frozen statue.

At what point is this too much? I'm back to feeling incredibly guilty, how do I only if we're pushing too hard and making things worse? What do I do if we get to the point I can't get him out of the house? I don't know if this is too much for him too soon but past experience has shown me it just prolongs things and makes it harder if we reduce his time in school.

@Bubbleswithsqueak my DD (16) has anxiety with panic and low mood. She is under CAMHS and started Fluoxetine last December but has just switched to Sertraline as CAMHS doctor thinks it might have a more positive effect on her anxiety than Fluoxetine did. DD thinks she might have noticed a slight improvement but she hasn't been on it long and is going to move to a higher dose in another week. I don't think GP's usually prescribe for under-18's.

Unfortunately DD is still waiting for therapy which should really take place at the same time as medication but I was grateful for medic appointment as things felt very bleak at that point. Medicating DD seemed daunting at first but we felt we should try everything. With careful titration she hasn't really had many side effects (a brief increase in anxiety when starting Fluoxetine, lower mood when starting Sertraline). She is currently living a very restricted life and rarely leaves the house but she has some interest in things again and isn't hiding in bed in tears all the time.

@StarryNight04 that was a horrible start to the day for you and DS - if you haven't heard anything from school then I suppose they must have got him to go in in the end. I have been there with DD on and off from year 7 to awful at the start of year 10 (over an hour in the car park with various staff members trying to coax DD in at one point in between panic attacks). We knew we couldn't do it in y11 without serious damage (and the professionals helping us were in agreement). You feel guilty whatever happens.

@Roxie55 thanks for those - I am going to speak to the GP on Monday (who has been amazing) and ask if they have any recommendations, and check that they are willing to work with a private psychiatrist.

Muddling I'm glad that the medication had a positive effect for your DD. I am feeling more and more that DD's mood is so low that it's going to be a real struggle for her without it. She doesn't really have any joy or interest in anything at the moment, and her self-consciousness is crippling and stopping her doing anything outside the house.

Starry - sorry you both had such a rough start to the day. Hope DS made it in and things improved.

Thanks muddling he made it in but I'm not sure how long it took, my heart and my head says we need to give it more time and not give up yet. School really are trying so hard with him, we'll see what next week brings.

Good news bubbles, it's nice to hear about progress, your dd's friends sound lovely.

Good to hear he made it in Starry and that school are being so supportive. Fingers crossed for next week. I never thought we'd be in the position we are in now with DD - definitely not a conscious choice.

Emailed LA Tuesday to chase letter confirming EHCNA and next steps, mentioning that we would be requesting they contact people/professionals under section h. Case coordinator sent a brief email on Thursday to say we should have received letter by now and that the LA had written to people for info last Friday. This was clearly designed to put me off asking for anything further.

Letter had arrived late Wed and contained a brief list of services the LA would contact (same as last time and probably no knowledge of DD). Definitely nothing that will elicit new or helpful info - definitely not a fact finding mission and it made me unbelievably angry!

Ignoring email and comments from case worker we emailed specific request to LA asking them to seek advice/info/assessment from those mentioned previously (OT, SALT etc) Friday morning (got receipts).

Fully expecting a response next week telling me they can't possibly contact anyone we've requested. (Have already found IPSEA response letter).

It's so frustrating the situation in mental health right now. We are our kids biggest cheerleaders so keep strong

It's all so slow and infuriating isn't it?

So frustrated this morning. DD's mood has been generally better (other than a blip on Friday when she didn't eat properly). She has walked the dog every day, and yesterday she even managed to read some info about different school options. But last night she forgot her melatonin and didn't get to sleep until 4.30am, then woke at 8.
It's such a chicken and egg situation. She is autistic, so her levels of anxiety and overwhelm are just generally high, just from existing. This affects her sleep - she has been surviving on 4-6 hours for over a year, even with the melatonin. This must affect her mood, so that just gets lower and lower, and she's exhausted, so she can't engage with the CBTi, and struggles to do stuff (like be outside) which would help her sleep and her mood, which ramps up the anxiety, which stops her sleeping. And so it goes on and on and on.

Talking to the GP tomorrow, and going to get his ok for private psychiatry. I think I might get her some piriton for tonight - I know that's not a long term solution, but she's going to crack if she doesn't get 6 hours.

One thing this has opened my eyes to is how hard parents have to advocate for their children, it really shouldn't be so hard.

I hope dd gets some rest tonight bubbles I have periods of insomnia and it 💯 makes everything harder when you're so tired, I'd go for the piriton option too if it will help her.

As for ds he told me yesterday calmly and matter of fact that he wants to be at school. So that gives me the answer I need, for now we keep on going.

Bubble be aware piriton doesn't make all DC sleepy, it makes some hyper. You would have to lie to get it OTC, but promethazine is an antihistamine that makes people sleepy, and is occasionally prescribed off license short term to aid DC's sleep.

Muddling complain about the lack of therapy and point CAMHS in the direction of the NICE guidelines.

Starry that's positive from DS. It has only been a week since starting secondary, it's still early days. You will learn the signs unique to DS that indicate you can keep pushing and the signs indicating you must stop. Keeping a detailed diary may help you spot the signs and any patterns. If this is ongoing rather than just over the transition the LA can provide medical needs tuition in school but outside of the classroom. This is often used as a reintegration method.

DS3 has settled in to school much better than I thought he would. No tears on Friday, and he's looking forward to going back tomorrow . DS1 on the other hand has not coped well with his EOTAS package restarting, or with DS2 having friends over yesterday afternoon.

Well even without the piriton (which she didn't want to take) DD got to sleep at 11pm and slept for 8 whole hours! So I'm counting that as a definite win.

Spoke to the GP today - he would be prepared to prescribe antidepressants for her even without a psychiatrists involvement because he feels that her levels of clinical depression are so severe. So he was more than happy to write a referral letter for a private appointment. I know GPs are really struggling at the moment, but I have to say that our surgery have been incredible. When I rang for an appointment the day after DD attempted to take her life, the receptionist said that all the appointments had gone, and when I said it was urgent she very kindly asked why (I was close to tears), then ran off and got a doctor to speak to me immediately. That GP has phoned every few days to check in on me and DD.

CAMHS however... GP was utterly shocked that they still haven't been in touch. He said that his referral letter was very strongly worded, and he can't believe that we haven't heard from them.

GP also recommended that we don't worry about school until after we see how DD responds to the medication. So I talked to DD about it, but also saying that we need to gradually close the gap between what she's capable of right now, and being able to do some sort of education (whether that's in school or online). She got very shut down, and eventually managed to text me that she doesn't care about anything or want to do anything because she failed to kill herself, so now she's just waiting until she can die. That's probably the most honest she has been about how she really feels, and was very difficult to hear.

Trying to focus on the wins. Her mood is definitely better than it has been. She has walked the dogs every day. And there are occasional laughs and glimpses of lightness.

Hope everyone has had an ok Monday - have DCs made it into school?

Bubbles. So glad your doctor is being so supportive. Fingers crossed the meds will really help.

My dd didn't go in today Had to take her for. PCR test as her two friends have tested positive and she has headache and sore throat. So frustrating but will know by tomz I hope. Otherwise she seems a lot more chipper. Had email from her phycologist to say the session on Saturday went really well so things looking up there.

@Bubbleswithsqueak, so pleased you can see glimpses of improvement, I hope the lightness overtakes the darkness soon, its so good to have a GP onside and that he will prescribe, hang in there!
@whenwillthemadnessend, hope your DD is ok, please she seems happier

DD had a visit to a specialist school today, they have offered her 4 taster days next week, which DD has agreed to but not sure how we will get her in as she only managed two short days at her current school last week!
Feeling apprehensive about the whole thing, we need to go to tribunal to get her a place so nothing guaranteed . Also , and I know this sounds totally mad after all the pushing I have done to get even this far, I am tonight feeling incredibly sad that mainstream education and I suppose the future I envisioned hasnt worked out and I am now worrying the specialist school wont be able to stretch her academically, even though she isnt receiving any education at all at the moment due her lack of attendance and not being able to cope in current school.
Zoo - I bought the book you recommended will try and work through it myself and with DD, I think we both need to do it!
Hope everyone has a good start to the week

bubbles your GP is a rare find chasing things up and offering such support.we were told multiple times under 18s can only get AD s from camhs though?
Glad there are glimpes of good days.hope is everything

Sorry lack personals lately.its been crazy here.ds had school visit yesterday.picked up blazer and toe after.hes now a velcro child and I've fell over him this morningMonday he has a two hour trial session with us loitering in local town centre which is less ten minutes away
DD IBS/reflux is in max state she's constant pain and discomfort and regular multiple loo trips before school has set in.i may need speak doc about that.i also think her pain perception is out(feels it more than others would) as everything "agony" like folded up and distressed
Still probs with lil zoo
I'm getting very low with a of it as "d"p I'd sniping at me all the time and perimenopause is making me irritable,exhausted and depressed

.

Runner I hope the taster days go well. How you are feeling is normal. Remember, if necessary, academics can come later. It is little use being academically able if you are unable to function in everyday life. MH has to be the priority.

Bubbles a supportive GP makes all the difference. I hope DD got another good nights sleep last night.

Zoo how did the visit go?

It is very rare for GPs to prescribe antidepressants to children and young people regardless of severity of needs. Most (? all but can't be certain) CCGs have guidance against it. And most GPs won't prescribe antidepressants to children and young people because NICE guidelines state they should only be given under the guidance of a child and adolescent psychiatrist, and therapy should always be given alongside them.

Yesterday DS1 nearly got run over in the hospital car park mid meltdown, I wasn't quick enough to hold on to him.

leap that sounds extremely stressful.are you both ok?

Visit went ok I guess.i was always going to be a HUGE thing given he's not step foot in a school building in 3years
The staff are lovely.the hub has 4classrooms.not all have windows,one has a tiny one on one edge,those that windows face into main school carpark/inside school grounds are one way so they can see out,no one sees in.2will have big table and chairs around for group work/discussions.other two have more formal desk and chair feel.a room for calming down.no windows,echo and sound proof walls and lots sensory stuff will be added
Another room has a cardio wall and lots for the more fidgety stressed.kuds have own area for break/lunch with sink and fridge.it looks out onto the main road with but grass in front and they go add bird feeders there.has a kitchen and an area for theory learning too.small library.no windows in there,just sky light.all rooms have air con and heating and individual adjustable to meet temp need of student in there.i have couple pics I can attach anyone's interested?still awaiting lots furniture so going be borrowing from the main school if hasn't arrived this week(been due but haulage everywheres not up to speed).guineapigs are pending and fish.head units Labrador also be in situ often.outside space is small concrete and facing carpark.like a fenced in cage tbh.they hoping funding to add fake ivy trellis and planters.was ment be 10 only,going up to 20 during by end of year.thats now jump up to 22 by Xmas I think she said.now they're "live" they already have wait list of 4x capacity and parents constant ringing about next year's year 7coming in,so bit worried his quiet unit won't be as quiet as expected.heads of unit got autistic child and worked in Sen many years and her attention to detail is very very good

Zoo it sounds really positive, they've thought of lots. Hopefully anything that crops up when they actually become active are dealt with swiftly. As you said, it was always going to be stressful, and there will be bumps in the road. Photos would be good. I have visited a couple of secondary SEMH ARPs and would be interested to compare. I know you were worried about what GCSEs would be offered, I hope they managed to answer your questions on that.

We're OK, just shaken up, as was the driver, understandably. I don't know how DS wasn't hit. The frustrating thing is he was in his SN buggy but bolted as he was getting out of it and into the car. Really he is too big for his SN buggies (we actually have 2 different types ) now, but we've been putting off making decisions as we don't think a wheelchair would work the same for him, although this proves something is still necessary.

Had he gone into a unit like this sooner more GCSE wouldn't been available but as he only has a year left here it's picking up most useful/core ones
Here's the kids room for breaks/lunch.these aren't the final choice furniture.just borrowed whilst waiting bistro tables and chairs to arrive to give a feel for the space.right unit is a fridge.rught wall of first pic will be where guinea pigs go

*pics pop up different order
Right wall of right pic where guinea pigs will go feeders outside that window

Restless but need to calm room with interactive wall

Calming room(still not complete furnished/all sensory stuff in place)

Kitchen to right of oven unit is twice width again with high back stools and interactive board for theory lessons

Cute signpost made for the library.will try and get D's take more photos once all furniture in

Oops.heres signpost!