Thumb in fist at nearly 9 months

[jilted]

Quick summary.
I've had my suspicions that something was not quite right since ds (9 months next week) was about 5 months. It was one day he was sat in his bumb0 (which he hated) he kept shaking his head side to side. Then he started throwing his back and head back quite forcefully when holding him. He just would not sit still. He still won't sit upright in any chair (just slumps or gets upset) and can't sit unaided for more than a minute or so. He doesn't try to catch himself when he falls.
He just seems to hate sitting.
Then I noticed he was having these jerking movements and making strange movements with his hands etc.
Then some staring episodes.
He had an eeg to check for seizures (a 40 minute one) and that was clear.
So all I have so far is everyone telling me 'it's because he's a boy, he's jut aking his time etc) we don't have any more appointments scheduled and have pretty much been discharged.

But, now he is almost 9 months, nt sitting or even really trying to do much, I can't help this nagging feeling.

I've also noticed his hands are much of the time fisted. Not always but he tries to eat sticking his fist in his mouth whilt the other hand rests fisted too.

He can open his hands and pick things up though.

This is my 3rd child and not had any concerns with the others.

He had a fever this last week too and I noticed his startle reflex was really exaggerated. He kept jumping and jerking his limbs.

In the development report after they saw him the Dr wrote tat he had no righting reflexes and his tone seemed variable. He ygoes very stiff when picked up. Like he doesn't want to be cuddled or confined in any way.

Indon't know what to think. Everyone keeps saying he seems fine or it may be reflux or just that he is a boy (patronising?!)

I don't feel anyone is taking me seriously.

Ds was extremely ill at 4 weeks and in ICU for 10 days on a ventilator.
Other than that he has generally been well.
He smiles and is happy a lot f the time but can also seem vacant and unresponsive.

I think you know if there is something not quite right, but my totally NT DS wasn't sitting at 9 months either and HVs weren't concerned as it's within the normal range of development. Is he rolling or moving himself in any way to get to a toy he wants etc?

It might be that he is just too young to look for anything much and so you'll have to hold on. I suppose in the meantime, just give him lots of opportunity to do the things he does like and try not to focus so much on the things he doesn't, although of course let him have the chance to try and practice those skills as well.

He does roll Bertie but doesn't really attempt going anywhere to get to something yet. You can tell he wants the toy and is interested but he shows no signs of starting to crawl. The only thing he has tried is pushing his feet against the sofa while on his back to edge backwards towards it iyswim?

If your worried push to have a physiotherapy referral and paediatrician referral.

Jilted our son sounds exactly like mine was when he was a baby. Do not ignore our instincts and don't let themfob you off, fight for little man x

Ask for a referral to a physiotherapist. I was concerned about my DD who was a late walker and I was fobbed off by the doctor and HV. It turned out that my instincts were right and she did have low muscle tone and poor fixation in her pectoral and pelvic girdles. After exercises she improved a lot. Trust your instincts.

When they did the EEG did they do any tests to bring about seizure conditions at all?

My ds does the jerking and and exaggerated jumping when he has a fever and has done since a baby and I was told this could be precursors to seizures. This is probably not always the case but for him he did develop epilepsy at 2.5 and is now under investigation for various other things due to developmental issues.

I think you should pursue this, as Tealady says so not be fobbed off.

When I first took my ds to gp about absence seizures I was told he was tired or probably having a wee!

Thank you everyone. Isn't it just a gut instinct? There are very little things I notice as a mum seeing him every day that the Drs would never see.
Tealady has your son been diagnosed with anything?
Is there anything else that I could pick up on?
Houses, they did the flickering lights when he was asleep.

Yes jilted my son has diagnosed autism. This is also linked with with things like absence seizures and epilepsy thankfully we don't have those issues yet!

Thanks tea, I just wrote another on encouraging him to sit.
Did he ever do anything strange with his fingers or hands, almost like a trance thing or mechanical movements?

My dd couldn't sit or roll or crawl at 9 months either, She sat on the verge of 10 months, rolled from back to front at 11 months and from front to back at 12 months and crawled at 15 months and walked at 18 months. She was diagnosed with autism around her second birthday. Dd used to pat everything but the finger flicking and watching is a recognised autism behaviour although in a younger baby hand watching is very normal.

Not as such he did the fist thing all the time had to prise open his hands to clean them.
He didn't sit until around 11 months but he crawled and walked all before 15 month. So def delay in development.
I could have put him in a bouncy chair and left him all day he wouldn't have made a sound (this never happened) He hated the supermarket would scream uncontrollably even from a baby. we now know this is a sensory thing, bright lights, loud noises etc.
he would become fixated on something and would be distracted like a nt child. For instance his thing when stressed is doors opening and closing them over and over again it can be a proper door or a door on a cabinet etc.

Wouldn't be distracted ^^

Mine is also currently awaiting autism assessment. Certainly in my ds case his temperature problems are related to a neurological and processing issue which may or may not be autism.

The other things you describe such as the trances and odd movements can be related with these things and also sensory processing difficulties.

Ds's absences are fully controlled now on meds but he still has absent spells which are not seizures. They are usually when he is suffering from sensory overload and cannot process any more stimulus.

Mmm interesting. He does smile, coo and babble at times, at others seems distant. He will respond to his name sometimes, again, other times he just doesn't hear.
He doesn't point or clap yet, I've tried pointing to things for him to look at but he doesn't look. Then again, I'm not sure what age babies do this.
He is still mesmerised by ceilings, he stares up for ages.
I don't think he gets particular distressed by supermarkets etc, he seems ok when we are shopping or out as long as we are moving!

Houses were they picked up on EEG?
What sort of age do they start on a diagnosis? Maybe he is too young?

Lol yes the minute the car or pram stops moving the screaming starts. Oh I remember it well! My ds would laugh and smile too.

Thank you for all the insight. I did feel a bit fobbed off by the people he has seen so far apart from tone first GP who actually referred him to the hospital. She wrote on notes he had 'cerebral irritation' and that his behaviour was abnormal.
After that though, because his eeg result was clear I think they just let us off.
Maybe I'll take some video too and keep some kind of diary.

Unfortunately in my experience it's a long hard road for diagnoses. My son is 6 and was diagnosed last oct but we had been pushing and pushing since he was about 15 months! Don't give up and fight his corner. Do some research on asd etc to be armed with knowledge. where are you located?some areas are better than others for support we moved 50miles to access better support from a different county!

Hi tealady, He was seen in Somerset as I was staying at my mums but we are back in London now. He was in Kings ICU at about 4 weeks old and spent 10 days on a ventilator, he was really ill and our local h's'ital had to refer him over. (also a London hosp)

I'm just wondering too now if autism affects the muscles or if that is more cp related?
I also wrote on other post, do I keep trying to get him to sit if he doesn't want to or leave it? He really only likes being on his back and rolls a bit. I feel I should be doing more to help him but in another way if it's hurting him or he clearly doesn't want to maybe that's not a good idea?

You need to push for a physio and paed appointment. Your ds sounds like my dd at that age with the no sitting and hand fisting. Hand preference at that age is not normal. Don't be fobbed off by the HV. Go to the GP and demand a referral. Appointments can take an age to come through and early intervention is key.

Based on what you have said I would not think ASD but more likely neurological. Start a diary of things he does which stand out as different so you can refer back to it. I would expect any half decent paed to refer him for an mri if he is not sitting by 12 months.

Just support and encourage him jilted don't force him. The bumbos are great did you say he doesn't like it though? He will do it in his own time don't push him because that what he "should" be doing! My hv was pants and told me not to feed ds till he asked for food! Terrible advice! When offering choices of toys or food etc only offer 2 any more will confuse and upset!

Yes like lady says keep a diary my son was pfb so things we thought were normal actually weren't quite but we had no ref point so writing things down is a good idea cos you'll forget too if the list was anything like ours pages and pages long of you think of questions feel free to ask am trying to remember back to those days x

I think I'll get him an appointment here then lady. I'm glad some people have related to it on here because in RL people are just telling me 'he's a bit lazy or he'll get there etc. I'm not usually the neurotic type but it feels like everyone thinks I am worrying over nothing.
The thing that also concerns me a bit is that he is a big lad (91st percentile) and though not obese he isn't really getting any exercise to shed it.
My dd1 was walking at 10 months and easily cruising at nine. He just isn't anywhere near it. Dd2 was a bit lazier but she was certainly getting around at this age.

Tea, his thighs get stuck in the bumbo!! Also he won't keep still in it. He just jerks his head around. That is when I first noticed this behaviour.
He will do finger foods but he is still trying to eat with his whole fist. He is a good eater though generally. Basically when I try to sit him up he just starts crying and flips his head and back back to lie down.