Primary school auties thread 9 - spring / summer 2022.

[danni0509]

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

Thread 1
www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Thread 2
www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 3
www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 5
www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1

Thread 6
www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1

Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

I took ds for breakfast this morning, it’s on his way out to school he passes it every day and taxi said to him she’s been before so ds wanted to go, he kept asking, so we suprised him this morning, didn’t tell him where we were going and he kept his eyes closed and opened them when I said we were here. He only had 3 pieces of toast me and dh didn’t 🤣 but he sat so nicely and buttered all his toast by himself. Me and dh were actually able to eat our food for a rare change!

I went up to get his toast and he just stayed with dh didn’t try leave his seat or anything…….

We’ve been to Asda for a few bits, he was as good as gold in Asda too held the trolley all the way around.

This isn’t the ds we’ve known for 8.5 years!

Im taking him for a walk soon so he could soon change my mind 😂 but he’s been totally delightful today.

Hopefully the pharmacist can recommend something for him open

Just a random thought but have you tried a dehumidifier or humidifier in his room for his stuffy nose? Is it his eye that usually irritates him or his nose? I can’t quite remember. Does he have allergies? Could you try a week of piriton to see if it helps?

(I’m not sure which type you’d need, de/humidifier, taking air out or adding air in, I’m not sure which way works for which symptom) I used one for a while for ds when he kept getting croup / bad chest.

Ignore me if you have already tried those things, I’m a bit of a witch dr when it comes to treating ailments! 🤣🤣

Forgot to mention what ds did on Friday, stuck his thumb in a Diet Coke can and got his thumb stuck, He kept trying to pull it out screaming and his thumb was wedged but he kept pulling it more and I could see blood everywhere, the more he pulled the more it cut it, he let me get it out eventually but it’s proper gashed his thumb open, bled for ages! He doesn’t let anyone put plasters on only he can do it, but on his thumb he couldn’t do it, so he let me sort it which took a LOT of persuading, I thought at one point it would need stitching as it was gaping wide open, but i checked this morning and it’s knitting back together nicely!

I bought some finger plasters, they are amazing! Wrap round 3 times and don’t budge!

Good job it wasn’t his tounge as he sometimes tries to stick his tounge in the can hole!

I said no more cans now ds, if you want a bit of coke or whatever it’s in a cup!

danni often it’s his nose and eye together! I think it would be a humidifier and I haven’t tried one yet, might be worthwhile. Today he definitely has a cold but other times when it happens at night he’s fine in the day, so quite possibly an allergy of some sort.

I’ve just been to three pharmacies. The pharmacist in Asda was helpful, he has given me liquid phenergan. Is that the same product we’ve discussed on the thread before? Anyway, I’m hoping this will decongest and knock him out tonight, however the dosing is rather vague as it says 2-5 spoonfuls… I guess I’ll go for 2 to start?

danni so glad that the medication is having such a profound effect. I hope you see improvements at school soon too.

Oh, and pharmacist said he wasn’t sure it should be taken alongside the melatonin so we’ll skip that tonight 🤞

Open yes, phenergan is what ds takes, it is an allergy medication too, also used for anti sickness, it’s used off licence for sleep as it makes them drowsy (doesn’t ds unfortunately) it’s supposed to keep them asleep too. Jury is out on that one though!

Ds takes 17.5ml a night, he started with 10ml, then went up.

On the box though it does say 25mg for ds age (or might be 20mg) but I think he is on less as he takes melatonin too.

Sorry cross posted.

It can be taken alongside, but I understand your caution. I was a bit weary of combining but CAMHS said it was perfectly safe.

Ds takes 5mg liquid melatonin, 17.5mg phenergan together every night.

Great, thanks danni. I guess we’ll start with 10 mls, which is two spoons. How long before bed do you give it to ds? I will read the leaflet, promise. I’m quite excited!

I was instructed to give him, (for instance if I want him in bed at 9pm)

8pm melatonin.
8.30pm phenergan.
bed for 9pm.

So 30 minutes before bed I would say. When I researched it did say it takes roughly 20 minutes to start working.

I hope it works for him and you all get a decent nights sleep x

Had a lovely date night last night but DS is being a total argh today, just doing stuff on purpose to wind me up etc. He was still awake for my mom when we got home ..argh. is it bedtime yet?!
That's so much for your sister to deal with @danni0509, glad DS had a nice breakfast out though. Good luck for the meds @openupmyeagereyes

Good you had a nice night out susan sorry ds is being difficult today, I hope bed time comes around quick for you x

I want a baby sitter for future, (not yet, maybe year or 2 down the line) somebody at my house so ds is in his own home / bed, plus my house is ds proofed so he’s safer, ideally I would like family, ie my mum, rather than a sitter I have to pay £££ for! 🤣 my mum offered before but honestly she’s fucking useless with ds. He hits her and spits at her etc and she looks utterly clueless in how to manage him.

My thinking is, as he gets older, medication is working and he learns more, chills his beans a bit she may manage him a bit better.

I would worry paying someone too, I know they have agencies with people who are SN trained etc etc, but they could be a weirdo! Not to mention how much they charge.

I know that’s unlikely that they would be abusers. But I would just feel better someone like my mum.

She said the other day when we were talking about me going back to work when ds is older like teenager or whatever and she was like he can come to me after school, taxi could drop him here. You could get him after work.

Then I was thinking god I’m going to need childcare forever, no letting himself in with a key when he’s 13/14. He’s going to need babysitting when he’s an adult i imagine to a degree. (Like someone there for him, keeping an eye etc) I know they get support workers but for set hours, not to tie in with parents work hours or whatever. I had a vision of ringing my mum when ds is 21 can you have him today…

What a depressing thought, you literally do have to stop your life forever don’t you.

(Don’t mean that as bad as it sounds. !!!!!)

I had a vision of ringing my mum when ds is 21 can you have him today… this made me chuckle, sorry.

I think finding something you can do wfh is ideal danni. You have the time to train, what do you fancy?

I think the obvious thing for me would be book keeping but I imagine it’s quite a flooded market.

What a disaster trying to give ds that medicine. He refused to take it so we had to force him and he spat out half of the first syringe. It’s probably not going to help now so all for nothing! There’s absolutely nothing he eats or drinks that we could put it in either.

What a shame open I know he’s v limited with his food etc but what about his drinks? Does he drink milk or hot chocolate or anything nearer bedtime liquid wise you could put it in? What about water if that’s what he drinks could you put it in there and mix it around?

I think it’s orange flavoured isn’t it, I don’t know what it tastes like but I know it’s a pale orange colour.

Is there anything he really really loves, (I know he’s mad on his games / screens) just thinking of a way to bribe him into complying. (Easier said than done I know)

What a pain in the arse though.

Btw, I meant situation being a PITA not your ds specifically!

That phenergan is v sticky, as you would of found out tonight when he spat it out. I hate it when ds knocks it, it goes everywhere and is so sticky! He knocked it on my clean pyjamas once flapping his hands, I wasn’t happy. My skin was really sticky too.

I hope you can find a way to get it in him, then see how it helps his eye / stuffy nose and hopefully for your sake his sleep.

Just a thought, the phenergan comes in a tablet. Ds takes them doesn’t he?

Boots sell the same thing in the tablet. Same box etc.

danni he only drinks water and he wouldn’t with that in it. I tasted it and it’s not bad at all but he’s so funny with taste. He’s already woken briefly once. Hoping that’s it until the morning.

That’s isn’t it, they can be so sensitive. Ds is the same with smells, he does this sniffing thing with his nose as if he’s smelling. God the noise winds me up, there is nothing even to smell half the time. Yet he can have a Pooh in his pull up and it stinks and he doesn’t do the sniffing thing then, happy to lounge around stinking the street out, but I have a coffee he starts the sniffing noise as soon as I’ve put it in the cup, and by god if you dare eat crisps I feel like chopping his nostrils off from the noise coming out of them! 🤣

Hope he stays asleep, ds went off at 9.30.

Awful night. Ds went to sleep at 8. He woke at 8:45, 11, 12:15 and 1am. Then he slept until 5. Each time he was mostly still asleep but distressed and ranting about whatever dream he was having. He’d go back to sleep after maybe 5 minutes. I’m not giving him that again!

He’s still snotty today so I’m going to keep him at home. I forgot to test him last night so I’ll try and do a swab tonight.

Ds also funny about smells. If he doesn’t like the smell of our food he carries his plate into the living room.

Open just a quick one as had a full discussion with DSs paed re sleep the other week.

Phenergan absolutely can be combined with melatonin. It supposedly keeps them asleep as opposed to melatonin which supposedly gets them to sleep. As Danni says it’s not foolproof and we noticed DS was putting his hands in his mouth a lot more. The paed was not surprised at this as it dries out the mouth. It does come as a tablet as Danni says OTC. Can you hide that in food? We used to give 10 mg tablet and 5 mg melatonin.

However worth bearing in mind there is also alimemazine which is a liquid and an antihistimene. Paed said it’s really expensive compared to phenergan but v v effective for DC who don’t get on with phenergan. She has prescribed for DS he only takes 2ml but it’s amazing. Why don’t these drs tell you these things initially? He takes now just 2 mg melatonin plus this. The pharmacists rang me to reiterate to me cost (erm.., do I care???!) but we have it on DSs repeat now. We may not use every night but just fyi !

The phenergan tablet is v small by the way