Primary school auties step into Christmas and the New Year - thread 8

[openupmyeagereyes]

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

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

But obviously just keep an eye on your ds etc. And if you’re concerned then phone the dr who prescribed.

But for us that was what happened to ds. His eyes were like flying saucers. It’s not something we were warned about prior to us giving him it that my ds would look like he had just got home from a rave!

It can mean your child is having too much stimulant, and I’m no dr (disclaimer!) but I see your ds is on 10mg and that’s quite a low dose anyway so probably just needs to adjust to having it in his system.

(That’s seems to be what happened with my ds)

Omg adhd meds yesterday. Danni thank you so much for your help.

What an ABSOLUTE shit show. I’m amazed there isn’t more on MN.

Meds at 8am. Overall a tiny difference but absolutely minimal compared to what happened.

9.30 he started with awful facial/ mouth tics. Sticking tongue out and in, wanting to bite anyone and everything, licking lips and around mouth. I was with mum and we were both like wtf???

It wore off at 5 and the tics stopped. He had usual melatonin an is normally asleep at 9 ish. Last night still up at 3am. Had to give him over doubke melatonin!

Honestly if this is it his adhd isn’t bad enough to be medicated I can tell you without a shadow of a doubt. I can’t believe they don’t tell you this???????

Big hugs @carriebradshawwithlessshoes oh my word, maybe ask docs and see how it goes but it sounds horrendous!
DS sticking his foot out in taxi this am and I saw them start to get stern again so just stepped in and dealt with it! Gave them a leaflet too but will see if they read it. Humph! Two weeks til half term guys!

Well done Magrat that should shut him up! I hope he reads it.

3 weeks til HT for us… 😡

carrie no probs, any time! I hope you get some answers if you phone anywhere today.

I sometimes (in my experience) think it creates more problems than it solves, ds sleep has been worse since he’s been on adhd medication. He has to take 2 diff ones a night now and he’s still been up this morning since 3.35am!

He would do this prior to adhd medications but overall during the 5 months he’s been taking it, it has been more persistent / frequent.

I know what you mean. If a child has v v severe adhd and the effects of meds are v v good and transform then maybe you will tolerate quite bad side effects. But I would say DSs adhd is mild to moderate (probably more mild) and the side effects were horrific! So unless there’s another drug…??

Will update on it when I hear. No one is keen to call me back after my ranty email!

Since DS doubled his dose Danni are you still seeing no benefit?? If not that’s really mad!

carrie No not really. He is just the same. I can’t tell he’s had anything or not, if I wasn’t the one putting it in his drink I would be questioning the person that was 😅 I think from what I have read, it doesn’t make them behave anyway it’s not like an instant cure, it just makes them more available to learn how to behave / learn new things if you see what I mean? So more able to retain information needed that sort of thing.

magrat they sound so picky, just what you need isn’t it!

Ds hasn’t had a great day at school again. I won’t even go in to it 🤦🏻‍♀️

Ds teacher told me with severe adhd they don’t expect miracles but at the very least he would expect medication to calm his thought process down for a nano second so he can think before he acts, so rather than (for an example) ds flushing the toothbrushes / toilet rolls / his underpants down the toilet really quickly every time he goes for a wee or walking past anything in his reach and his first thought to be to grab it and throw it / smash it, he should be able to think first. He knows he shouldn’t do that but at that very moment in time nothing crosses his mind other than acting!

So it’s not really panning out like it should. He’s fully medicated and still regularly does all that, so I don’t really know.

I hope you got a response from your email today!

open how is it going with ds?

Hmm. Must say I’m confused. A mum friend who actually works with adults and kids with MH issues (including lots with ADHD) was saying this morning that it is a stimulant which plugs a physical gap if there is one (key if there is one) that results in attention deficit. She said if there isn’t a physical gap it won’t work and will overstimulate (say, if we took it or if behaviour was due to something else like just part of someone’s make up or autism.) she said if there is a physical gap which causes the behaviour it WILL work.

Lo and behold I’ve just found another poster saying the same from last year!

So… Danni if our boys hyperactivity is due to behaviour but not linked to a physical gap (and there must be a physical gap for it to be true Adhd) then it will over stimulate/ not work if that theory is correct?!

Like someone being tired due to a lack of thyroxine. Take thyroxine, jobs a good un. But if they are tired due to something else (say anxiety) giving them thyroxine won’t make them less tired. Because there’s no thyroxine gap to fill.

Could that be it??!! Has CAHMS ever talked like that? I do think it’s supposed to calm them if they are physically lacking the stimulant (real Adhd by definition.)

Giving up now. My minds blown.

Hope everyone is ok how are things Open?

I’ve wondered before whether ds is just ds due to his autism presentation carrie

He’s been nuts since he was about 1. Prior to before 1 we thought he had some autism type stuff going on (certain quirks shall we say) but soon as he could walk run he’s been mental and doing impulsive / dangerous stuff. I didn’t think adhd started that young. So this is why I thought maybe this is HIS autism because he presented like that straight away iyswim and adhd is something that they say starts ‘age 3 or 4’

(Also he has been diagnosed with oppositional defiance disorder by CAMHS. But I don’t tend to mention that diagnosis even though it’s probably important, but they all overlap each condition anyway to some degree, so you don’t know what’s coming from what sometimes when they have multiple diagnosis’.)

I did say this to ds teacher before about is this just his autism presentation and not necessarily adhd? and he laughed and said no he’s definitely adhd. He said he knew the first morning I dropped him off in may. He actually phoned me that first afternoon and asked if he had an adhd diagnosis yet? (he was still being ‘investigated’ at this point)

I’m told by CAMHS and especially his special school he 100% has adhd no doubt at all.

He had loads of assessments done by CAMHS and obviously his school see kids with additional needs all day long so I just take it as they know more than me 🤣

I just thought it was maybe why his medication wasn’t successful. Although school seem to think it helps (when he has a good day / run) but I don’t see it personally.

Adhd medication only works in 70% of cases, maybe ds is one of the 30% that medication doesn’t help (although I can’t say that for sure until we have tried other types maybe)

Also important point is Stimulants ie what my ds takes, aren’t always helpful to adhd either (although they are cheapest) make of that lady bit what you will.

Last bit* not lady bit!

Playing devils advocate though, if you have a very hyper child who has adhd/ stimulant deficit in their body (ie who will respond) compared to a very hyper child who presents exactly the same but that behaviour is NOT caused by a stimulant deficit can a Dr/ teacher tell the difference? Unless of course you did a blood test or whatever to check level of stimulant in the first place?

My own DS has done a complete u turn since being 3. He couldn’t walk til 2.5, only mastered running properly over 3 (this is also true of my NT DD, both v v late with gross motor.) in the old days DS was v v placid, v v attentive to people but waaaaay too horizontal/ laid back. Total go with the flow, never kicked off, would sit for hours and smile at me and do fuck all! All the parents were like ‘my 2 year old is manic’ and I was like ‘my 2 year old can’t walk!’.

It’s really bitten me on the bum now!

Did CAHMS give you that 70 pc quote Danni or is from elsewhere?

It’s all over the Internet carrie. Most things I’ve read. Nothing is 100% of course.

I meant the bit about nothing is 100%, as in effectiveness of medication, I didn’t mean what I had read about it.

carrie that sounds scary. Have you spoken with the paed that prescribed it yet?

danni sorry that ds had a bad time at school. Hopefully tomorrow is better.

We went into school for lunch today and it went pretty well. We will continue to do the same and I will let him get on with things as I can and then step out of the room for a while then we can extend.

@carriebradshawwithlessshoes do you get your melatonin from the doc or do you order from Biovea?

Does anyone on the thread order from Biovea?

open I’ve looked on biovea before as they sell melatonin gummies, and magnesium gummies. the reviews look good from customers and I’ve seen biovea melatonin mentioned on here from people that buy it from there.

Ds is prescribed by the community paediatrician. He was prescribed about 18 months ago and we have tweaked the dose once during that time via her.

Before that I got it from a few places tbh. I did try the gummies they were 5 mg I would give him half. I have found the circadian the most effective tho. He has it on repeat prescription.

danni yes I’ve seen plenty of others use them but wondered if anyone we ‘know’ did. At the moment they don’t seem to have a time release 3mg without B6. I thought last time I looked they did.

I’m fed up with the GP not putting it on repeat prescription. Thought it might just be easier to buy it.

I would buy melatonin if I didn’t get it from the hospital. Definitely.

I buy ds magnesium, it’s ‘supposed’ to help them sleep 😅

carrie did you end up giving ds anymore medication?

I think I’m going to drop back to 5mg with ds in the mornings (he’s now taking 10mg first thing), and school only give him 5mg at lunch anyway so that will stay as normal, he’s being a total pain in the arse at school every day and frankly I’m sick of reading their negative emails.

He’s up and down there usually, but he started the increased morning dose on the 21st jan, and every email since has been negative, prior to the 21st he’d had a good couple of weeks at school. Even the taxi said today has something changed with him? (They don’t know he has more medication, it’s not really their business, I only tell school if I increase) I asked why and she said just really silly one minute and really angry the next he’s been doing it for a couple of weeks now, he ripped her window wipers off the car today by jumping on her bloody bonnet grabbing them and ripping them off.

Plus he’s been on a rampage today at school and hit every single child in his class, yesterday he was using missiles to target them all.

I think I’ll ring CAMHS in the morning but I’ll email his teacher first and see what he thinks.

open you have given me a thought. I may buy some extended release melatonin. (Gummies - id never get a tablet down him) and try that for a change (his current melatonin isn’t extended release) see if that makes a difference.