15 month old development delays

[Paapaa]

Abit of back ground to my lb.
Started smiling around 5 months
Started rolling around 11 months
Started sitting 13 months(still falls back and cant get into position himself)
About 8 months old he started with convulsion hes has bin admitted 3 times when doctors and nurses have mentioned about his floppyness and not holding his head very well but nothing came of it, hes always bin very floppy so i didnt think much of it. Our consultant sent us for EGG, MRI and genetics which all come back clear(waiting for sleep study). Since we got our consultant the hv has backed away so we don't see her anymore and dont feel very supported. He can't use cutlery very well but can finger feed himself and hold beaker with handles if we place his hands but cant hold a bottle, he's clapping and can say car and peppa. He can bare weight on his legs if being well supported(holding under arms), no crawling or cruising. He gets tired very quickly when we're playing or trying to strengthen him. If I pass him toys he just drops it. He has his 1st physio next month but starting to worry as come across low muscle tone/hypotonia and kicking myself incase I could of do something earlier to help him. Has anyone gone through anything like this? Thanks

I would push for the next tier genetic testing. They will have screened for common ones but you want to push for the next tier genetic testing. This will included more rare genetic issues like Syngap1.

Not me but a friend just got a diagnosis through the second tier testing for their little girl.

Do you have ongoing outpatient care with either a paediatrician or a paediatric neurologist? If so, contact their secretary and leave a message that you are seriously concerned about delayed gross motor milestones and hypotonia (some other milestones sound a bit iffy, but less so), are worried that this ties in to the seizures, and that you are very keen for a neurodevelopmental assessment. If you do not have ongoing outpatient care, then go to your GP with the same thing. Include the list of 1)ages milestones achieved, 2)what your child can achieve now. Really glad to hear there's physio coming up, as they would be part of any such assessment.

Some special schools used to do 'stay and play' type sessions where you could meet other families with younger children with developmental delays. There would also be information about what services you can access. It might be worth seeing if this is something available in your area