3.5 year old is turning in to a demon child.

[L0ts]

I wish the title was an exaggeration. Over the last week and a half my happy, cheerful and pleasant 3.5 year old has had a switch flipped in his head and suddenly NOTHING makes him happy anymore.

We are having tantrum after tantrum over what seems like absolutely nothing. I will add, it is hard to understand him as he is being assessed for autism and has a significant speech/communication delay but we can usually tell what he wants and he does a lot of hand leading.

Anyway, he now suddenly hates going anywhere, usually a lover of parks and soft plays, shopping etc.. now he hates it all. He likes the car but now cries and moans if we stop for too long at traffic lights? It’s mental to me where this has even come from. 50% of the time he seems adamant he cannot walk up and down the stairs and needs to be carried. He is becoming increasingly difficult at meal times, he had a meltdown earlier when I handed him pizza pastries (something that is his favourite) because it wasn’t toast.

This meltdown lasted forever, even though he did pick and eat a little but we tried him with his usual bath afterwards and the meltdown got even worse. Then he came downstairs and was adamant there was something on top of the fridge he wanted, there was nothing, but it ended up with another 15 minute meltdown until he gave in.

He has even been given us his shoes to go out at 8pm? We never go out this late, his bedtime is at 8:30?!! And like I said above, he isn’t happy no matter where he go, he’s still grumpy! It is driving me mad where it’s all come from.

Sorry this is long but is this normal 3/4 year old behaviour? It has shocked us because he is usually such a laid back child, would play for ages on his own, super happy to do anything, loved parks and going out. It’s breaking my heart to see him so miserable and angry all the time 😩

Can you do some basic signing op?
Toddlers are Hell without the possibility of SN...
💐

It's a shitty age. Terrible twos are nothing compared to the 3.5yo reign of terror. Just try to be as consistent as you can with boundaries because they push them a lot at this stage - and swear into a pillow now and again.

@Pumpkinpatchlookinggood We have tried everything with him honestly. He isn’t non verbal, he repeats a lot of what you say and knows all his nursery rhymes, colours, alphabet, shapes, animals, planets, you name it.. he just uses no words to communicate in any way at all! It really is frustrating 😩

It sounds characteristic behaviour for autism, but obviously, only a professional can diagnose this.

As autistic children sometimes don't say ( or properly process) when they are in pain, I would have him checked out for ear ache or some other malady.

If you can entice him to get outside exercise, it might help with the sleeping.

My son ( aged 25) is autistic and certain things sound like your son - especially the communication and naming colours, liking singing and remembering the words to nursery rhymes, but not always initiating conversation. I think that I felt that fresh air and exercise and nature suited him and gave him a feeling of wellbeing, whether or not he appeared to want to do it, before we left the house.

Is be inclined to ask for a check at the GP about not wanting to walk upstairs - just in case.

I'd keep him busy with sensory activities, if I were you - make these into a routine.

It could well be that he is ill. My oldest used to do this and then we would realise that he never complained of a sore throat or ear pain, but that he suffered repeated tonsillitis and ear pain. I once posted in despair on christmas day because his behaviour had been so bad and three days later realised he had ear infections in both eat.

Try taking his temp and also giving calpol. As a one off to see if it works I think it is worth a try.

Give him pain meds and see if it improves? My then 3 yeae old Autistic son broke his leg and never cried once. Sometimes they process pain differently to us.Take him to GP for ears etc if behaviour continues, rule out something hurting him.

It’s funny you both mention illness because about 3 weeks before this started he came down with an awful cold which lead to a terrible cough. He went to the doctors and was put on antibiotics for a chest infection, he seemed to REALLY pick up after 3/4 days on them but then suddenly came down with some sort of vomiting bug AND conjunctivitis. We went back to the doctors and got more antibiotics (because he threw up the last 2 days on them) and eye drops.

He didn’t eat for about 4 days and even then it was tiny pieces of food, he only seems to have his appetite back over the last 2/3 days tbh. So maybe he still isn’t feeling great? It’s just odd because there are these moments he is perfectly fine, almost like when he gets his own way, which is why I’m inclined to think he’s no longer poorly.

I have said to my partner though that because this is so out of character maybe it is worth taking him back to the doctors. Only problem is he absolutely detests the waiting room and by the time he’s seen he’s that worked up the doctor can’t do a full examination, it’s so hard.

@Diverseopinions Could I ask, did your son learn to communicate? Everybody finds it so fascinating that he isn’t non verbal and seems very able with speaking but doesn’t use any of his words to communicate his wants and needs.

Given what you have said about recent illness, have a google of PANDAS/PANS and see what you think.

PM me if you want to chat about it x

Our Occupational Therapist always says too that any illness, no matter how mild, can throw off an Autistic kids sensory system. When my son is poorly regulated/ out of whack from a sensory perspective his behaviours often challenge. So maybe theres an element of that?
But id still check with GP.
Communication wise have you done the Hanen course? Or even just buy the book, its pretty self explanatory.
One good tip that really helped my son who is also echolalic (repeats a lot of what you say) is to say what you want him to say e.g instead of asking "do you want a drink of water?" Say "I want water please" so he can repeat you, get his water and hopefully that will shape to him using that phrase next time to ask. Worked for my boy.

My little one is autistic and non verbal. This happens to him sometimes and when it does I can get that he's poorly.

My son is perfectly able to speak but chooses not too. He likes to communicate via PECS which has been an absolute lifesaver for him and us.

Is he speaking to communicate back and forth or is he copying chunks of speech he's memorised? The latter way is very common with autistic kids.

3.5/4 was around the age that the negative behaviours started up with my DS. The world suddenly got more scary. Lots of reassurance helps. And visuals.

My son learnt to communicate and school helped with that. He largely uses language to request what he wants ( eg food) and likes to mention certain recollections. He also likes facts, such as birth dates. He can speak more generally, when he wants to, and being at school promotes that. You may find that your son is like mine: his language and understanding are more developed when he is doing something, such as a physical activity or sport. He is good with train timetables and knowing what bus to catch. The context helps. He also likes texting as a way of communicating.

He likes setting little quizzes also.

I was also going to suggest PANDAS.

@L0ts can you ask the surgery if you can wait in the car or outside and have them call you when its your turn? If you explain about the tantrums they hopefully will want to work with you.

@SUSB2016 @HumphreyCobblers

I have researched PANDAS since it’s been mentioned and quite frankly it worried me sick when I first read it because my son has definitely changed since he was ill. He doesn’t do any obsessive behaviours though and hasn’t developed any tics? He did some odd things before he got ill such as hand flapping and staring at his hands anyway which is of course because he has ASD and he’s done these for the best part of 2 years.

His sleep is still relatively great, he slept through the night last night and the night before that he only woke once but usually he does sleep through the night. He is going to nursery five days a week and upon pick up we’re told he’s had good days and has ‘just been himself’ which tends to mean he’s been playing alone and on a solo mission all morning there but that’s what he’s like there.

I can’t comment on the bed wetting or urinary problems because he is still in nappies, again due to his ASD and the lack of understanding. It says the treatment is a course of antibiotics, well he had two courses back to back and displayed this behaviour during and after them still? He also doesn’t seem to have any separation anxiety, walks in to nursery fine without batting an eyelid. So I’m inclined to think it maybe isn’t PANDAS.

It is terrifying because we already have one illness in the family that we have to battle the doctors to recognise, gosh I don’t need another. Do either of you have first hand experience with PANDAS?

I do have an autistic child who has a diagnosis of PANS rather than PANDAS as no strep found in blood tests.

Don't panic. Easier said than done I know, but there are treatment options. The first thing I would do is to try a full dose of child neurofen for three days and see if there is an improvement. If things do improve then that is a diagnostic indicator that inflammation is involved.

Also do PM me, am happy to chat in more detail if you wish

Antibiotics not always the treatment, they didn't work for my child. He has had a short steroid burst which helped and is prescribed propanolol which has helped enormously. Very occasionally we use anti inflammatories, after a virus. PEA supplements work on inflammation also.

@HumphreyCobblers Have pm’d you 🙂

I will try and remember to keep this updated for people obsessively googling in the future like I currently am 🤪

hello, there is something wrong with the system and I can't access your message unfortunately, just keep getting a 'topic not available' pop up

@HumphreyCobblers Argh that’s frustrating.

I basically was just wondering what signs/symptoms your child showed of having PANS? And also if you’d give the Nurofen throughout the day or just once a day?

constant meltdowns and oppositional behaviour at first, we got a lot of tics coming along later when hayfever started. Yes to full dose all throughout the day. we had a very dramatic improvement with the first dose of ibruprofen, all behaviours stopped in twenty minutes (it was never that successful later although does guarantee an improvement).

sorry just posting in a rush, so ask again if you need to know anything else. There is a facebook support page that I have found invaluable if you want to have a look there x

@HumphreyCobblers My DD has been exhibiting symptoms since she finished a course of antibiotics for her sinusitis...been worried sick. Was it your GP that diagnosed PANS and prescribed the steroids? I have a feeling my GP won't even have heard of PANDAS/PANS.

DD has also been teething so all this time I was attributing her behaviour to that and have always been shocked at the personality transplant she has as soon as she is dosed up on Nurofen! But recently I began to wonder if teething can actually be THIS bad and am considering PANDAS/PANS. I just don't know where to go next?

We went to a private doctor to diagnose, although as he is also a well respected NHS neurologist that meant that GP was happy to dispense his prescription. Responding to ibruprofen is indicative of some kind of inflammation going on. If you look up the PANS PANDAS uk support facebook group they have information leaflets for GPs that might be useful to you x

With an autistic child it doesn't even have to be something as chronic and debilitating as PANDAS. It can just be an event or series of events that they found stressful. I had a big bleed in early pregnancy with my second child and was blue lighted to hospital while my DS was at nursery, which meant my DS had to be taken back to another kid's home after nursery until my dad could collect him. Not normal. In his head Mummy always collects and she's always the first and she waits for him at the door. Even though I was only gone 3/4 hours that one change of the norm triggered a lot of issues with DS, who became fearful of going to nursery, being at nursery, being out of the house, being in a different room to me etc etc.

We found that my DS was quite a content and compliant toddler, but as he has got older and more aware of the world the insecurities have increased greatly. We have to do a lot more active planning and preparation now than we ever did, and introduce breaks and down time.

I just wanted to update this post just in case anybody comes across it in the future.

The last 3 days my boy is almost entirely back to normal. He is no longer asking to leave the house 24/7, has played amazingly with all of his toys, no longer picky with food and is eating us out of house and home (I assume he’s making up for the lack of food whilst he was so poorly) he ate two breakfasts this morning and is now happily demolishing two cheese and ham wraps 😂

He went to soft play two days a go and we had to be the ones to tell him we needed to go home as he was having so much fun. He went to the park yesterday and ran around beautifully for 45 minutes. He even went in to some shops and didn’t scream and cry.

Another behaviour that was odd was him showing real anger towards the dog being around him, but now he is back to blissfully ignoring him and doesn’t care where he is. He was really hyper focused on the dogs whereabouts at one point.

I didn’t give the Nurofen in the end, mostly because as I went to I realised we were out of it and I just forgot to pick some up from the shops when I went the next day.

Thank you again for everybody’s advice, I have no idea what was wrong with him but I’m inclined to believe that with him being autistic he maybe was just out of whack a little after being so, so poorly.