Parents and carers of anxious kids/teens(part5)

[Stilllivinginazoo]

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

@1leapforward2back yes, we have thought about promethazine but worried to give him something that hasn't been prescribed. A sleep clinic might help but there is just a wait for everything.
He is restricting a lot of foods due to sensory issues, and more and more are being added to the list, like carrot sticks, because he got some stuck in his throat once, apples because watery food make him anxious (don't know why an apple is watery!), same with cucumber etc.
He had a very limited diet anyway so we are kind of just left with unhealthy stuff.
And we learned the hard way about piriton!
@MummyJ12 I ring CAMHS crisis every week, but because he isn't suicidal or self harming, he is not considered to be in crisis and won't be moved up the waiting list. It's extremely frustrating and we are left with a little boy who never leaves the house, is so sad all the time, anxious all the time and hates himself.

Elfton did you appeal to SENDIST? Was it refusal to assess?

I would reapply. Now if a needs assessment wasn't carried out or if one was but it is longer than 6 months ago. If an EHCNA has been carried out in the last 6 months wait to reapply until the day after 6 months because if you are refused there's no right of appeal if one has been done in the previous 6 months.

Always have you checked if DS is hitting any of the junior marsipan criteria? Where are you in the EHCNA process?

Piriton has worked well for ds in the past. Phenergan or promethazine is probably stronger, like Leap posted, it’s not licensed for insomnia for paediatrics. So you’d have to say it was for travel sickness. As long as ds is not asthmatic, you’ll be fine with it. It’ll make him thirsty but he’ll definitely sleep with it. Ask for the syrup.

I think so @1leapforward2back, will have to look back at the emails. Thanks.

We were in exactly the same position as you with CAMHS and how poorly ds was. Do you have private healthcare by any chance? We have had help paying for private CBT through Aviva.

Sominex (promethazine) makes me groggy in the morning - would that not be an issue for someone getting up for school though? DD2 sometimes has trouble sleeping and that definitely makes her more likely to school refuse, but I feel like a sleeping pill would make things worse.

Sorry, I guess it might help someone with anxiety who isn't leaving the house, though.

@AnneOfAvonlea well done, really pleased for you!

Always - sorry things are so difficult for you and at the moment. I have no experience of sleep or eating issues so can't offer any useful advice there. I have found emailing CAMHS more helpful than any phone calls I've had with them possibly because I'm able to better articulate myself and they are able to route the query to the right person however DD2's referral had already been accepted when I first emailed them and I can't remember whereabouts in the process you are at the moment (apologies). E.g. after DD's initial assessment appointment at which she was referred to level 3 for therapy, I sent a desperate lengthy email the the mental health nurse who we had seen to ask his thoughts on giving the supplement 5HTP to DD as we were desperate to try and help her mood and he phoned me to say he understood how difficult the situation was but couldn't give advice on supplements however he did manage to get a psychiatrist appointment organised for a few weeks later at which Fluoxetine was prescribed.

Is a private referral from your GP to paediatrics or a sleep clinic an option? I know it shouldn't be necessary but it's so much quicker and allows you to jump in again further ahead as the private consultant can then refer back to NHS services. We did this last year to see a private paediatrician and it meant DD2 was seen within a week but I appreciate that we were very fortunate to be able to afford it and it isn't an option for everyone.

MummyJ12 - well done on your school complaint, hope you sleep better tonight!

Piriton makes my dd hyper. Melatonin is the only thing to help her sleep. Prescribed by both paediatrician and psychiatrist. Needs to be one of the two as far as I am aware and then you can get a shared care agreement for gp to provide repeats.

Call camhs crisis line every time child is in so much distress that you can't help them. I found that it depends on who picks up phone on how proactive a response you get. Not right but there you go.

Great news @AnneOfAvonlea. You must be so pleased to make some progress!

@AnneOfAvonlea yes, I'm just going to keep ringing them until we get somewhere!
@MuddlingThroughWithoutAClue we have been accepted but haven't had the first assessment yet.
I have looked into private psychologists but they all have 6 month waiting lists. Possibly the GP might refer to private sleep clinic or paeds.
The problem is that everyone I speak to just says we need to wait for the report from his ASD diagnosis, then everyone will have more of an idea of support etc. he had his assessment in October and they have said it's still a few weeks to go before we hear anything. So more waiting and watching an 8 year old deteriorate before our eyes. I feel like I should be kicking doors down for him, but I don't know where!

*ASD assessment, not diagnosis, we haven't had that yet

Always, our GP wrote to the general paediatrician, who authorised a short course of melatonin over the phone. They put us on the waiting list for a (fairly pointless) paeds appointment, which took 6 months to come through. The paediatrician basically then authorised the GP to prescribe melatonin as needed.
Think you need a good GP to push for this though...

Thanks so much @MuddlingThroughWithoutAClue 💗

elfton melatonin is worth trying, it is unlikely to have a hangover effect. You would remember if you had appealed to SENDIST.

always if it's medication you want it's a psychiatrist you need, not a psychologist. An ASD diagnosis in itself isn't necessarily going to bring more support. In many areas DC are assessed, diagnosed and discharged. Support is needs based, not diagnosis led. Where are you in the EHCP process? A psychiatrist &/or CP assessment can be part of the needs assessment, and is a way in. Therapies can be included in EHCPs, a wider range than otherwise available and without sitting on waiting lists.

Anne we found similar with the crisis line. They were always helpful, but how helpful depended on who answered. On the times it didn't get DS1 seen sooner they did give advice on how to handle situations.

@always scared if your Ds isn't leaving the house and is eating a restricted diet he's almost certainly vitamin d deficient.
So give him supplementary vitamins plus extra d. As vitamin d deficiency can itself cause depression. Also I really would try a Sad ( stands for seasonal affective disorder) lamp as he's not getting any natural light. I use one in Winter & it really helps me. DD also suffered really badly last year from Sad as her online lessons precluded any time outdoors.

@Fferny1 he has daily vitamins, we tried vit d and he wouldn't take it because it tasted bad. I'll try a different one. And I will get a SAD lamp too, thanks

@Fferny1 can you recommend one?

Lumie vitamin L slim light box. Amazon choice for Sad Lamps.
One of the Operation Ouch guys - the Van Tulleken twins was on the BBC morning programme talking about it a few days ago. I had to show cynical disbelieving Ds (15).

always can you try different vitD tablets (or drops or gummies if preferred)? Multivitamins are unlikely to have enough vitD in as DS is already likely deficient. The other vitamin deficiency to consider is B12, which also often causes or exacerbates MH difficulties.

The SAD lamp didn't make a difference to DS1's sleep or MH.

CAMHS asked us to get a blood test done to check DD2's levels of a few things including B12 right at the start of seeing them I recall. Hers were all ok. We all take vitamin D as none of us get much sunlight particularly in the winter.

The problem is that I can't even get him out the door, let alone to a doctors for blood tests.
They did do tests a few months back (when he was in a better frame of mind) and they all came back ok

How did he sleep last night @alwaysscared? You both must be exhausted. Keep phoning the crisis team. I really hope that you can get him the help that he so desperately needs and deserves soon 💗

@MummyJ12 4:15am, 4 bloody 15! I'm at the end of my tether and don't know what to do 😞😫

Oh my. 😢 it’s a Saturday so I would have a pyjama day, don’t do much if anything and I’m with Leap, I would seriously consider an antihistamine option for this eve (piriton or phenergan syrup so you can control the dose) because tomorrow is Sunday and if he’s a little groggy tomorrow, at least he doesn’t have school. No wonder you feel at the end of your tether.
(Btw, phenergan can take up to two hours to take effect but piriton is only half an hour.)