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

This isn’t your fault.

As well as physio, has DS been referred to SALT, OT and Portage? If not, it is worth requesting referrals. Or in some areas you can self refer.

Among other things, OT can help with looking at adapted cutlery and bottles DS may find easier.

If you want the HV’s support you can still request that. Having said that, if DS has paed involvement, you may not find the HV’s support that helpful.

I don’t know if you are anywhere near these, but Ingfield Manor School in West Sussex and Paces in Sheffield offer free sessions. There are other places who offer sessions as well, some free, some charge, but I can’t remember them off the top of my head.

Also, depending on where you live there are sometimes equipment libraries such as Gympanzees for those in and around Bristol that might be helpful for you to try equipment/toys.

If you haven’t already, you should apply for DLA.

I'm new to it all so don't know what I can do. What's SALT, OT and portage? I think the health visitor has step away because of paeds but consultant doesnt really stay in contact. Didn't even realise you could apply for DLA

Definitely apply for DLA. Use Cerebra’s guide that you can find online to help you complete the form.

The HV can still provide support even if DS is now under paeds, but they won’t be able to make clinical decisions that are under the paeds remit.

SALT is speech and language therapy.
OT is Occupational Therapy.
Portage is a service who supports young children with additional needs. They don’t cover the whole country and some areas have their own version instead, but it is worth enquiring about a referral.

Lovely will look into these. Thank you