Possible cerebral palsy.. help?

[Brooklyn99999]

Hello
I’m just looking for experiences.
i have mcda twins born at 32 weeks after ttts. 6w in nicu and they came home, but they are now 18m (16m corrected) and have delays in every area.
No words, no proper babbling. They answer me and ‘talk’ in their own way but it’s very much vowels only and mostly monosyballic. E.g any questions asked are met with ‘ah!’. We have had two words this weekend but I suspect they were an accident (go & me) rather than real words!

Gross motor is miles behind. They can sit and roll but that’s about it, they can’t get to sitting by themselves, they can stand against furniture for maybe 20 seconds, they cannot pull up or cruise etc. if I stand them against a bench they’ve come on lots at being able to stand, and can pull themselves up if they start sitting on my knee but can’t pull themselves up from the floor (hope that makes sense). They army crawl and while they do sometimes attempt to get on proper hands and knees they always revert to belly crawling.

they also never fully got their pincer grip.

they are gorgeous smiley happy boys and have no issues feeding drinking etc, they can’t use a spoon because they drop it but can bring a pre loaded spoon to their mouths and eat it but then drop or throw the spoon. they can feed themselves with their hands happily. They can hold a straw cup and drink well.

i have suspected CP for many months but their consultant shut me down until the most recent appointment he has now referred both of them for an MRI without making any mention of a specific reason why, but I assume it’s to check for brain damage and possible CP.

Has anyone had a similar experience? Or even just experience of Cp and you could help me know what to expect?

There’s no one ‘route’, I’m afraid. DC develop differently and one DC's development can look very different to another’s even if the starting position is similar.

If DTs haven’t been referred to SALT, physio and OT, you should request referrals. In some areas, you can self refer. It is also worth looking at Portage.

If you are anywhere near these or if they will be suitable for DS’s needs, but Ingfield Manor School in West Sussex and Paces in Sheffield offer free sessions for preschoolers. 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.

Are you receiving DLA for DTs? If not, apply. The Cerebra guide is helpful when completing the form.

I have a DS with a “CP like presentation” (long story, no-one can agree on a diagnosis).

Thanks for your reply!

They are in a main stream nursery which for now is fine for their needs so far. They did only start two weeks ago two days a week. They are under physio who is going to go into the nursery next week.

I don’t think I can apply for DLA as there is zero diagnoses or even a certainty that there will be one. I of course suspect there will be but their consultant is very much in the camp that they will catch up.

I have a feeling we will end up but something similar to yourself, as in a vague diagnosis.

You don’t need a diagnosis for DLA. It is based on needs. DTs require more care and supervision than typical DC their age at the moment. If DTs catch up then brilliant, you can inform DWP at that point.

It’s brilliant the physio is going in to nursery and being proactive.

Thank you for that, I will look into it!
I’ll also look into a SALT referral.

I hope your DS is doing well. How old is he?

DS has complex physical, psychological, developmental and medical needs. He is 15. He has a lot of difficulties but he is brilliant.

It must be very emotional for you. I think I’m just starting on my journey, I’m so glad to hear you say how brilliant he is!

Those early days can be emotionally draining and feel overwhelming. We have a pub thread here if you want to join us. There are posters of DC with various conditions and ages.