Just diagnosed cerebral palsy

[Msrachel]

Hello

both my twins have just been diagnosed with cerebral palsy following an mri. they are 22 months old.

They can sit (since 7 months corrected), they can stand holding onto something, they can pull to stand from a step or my knee but not from the floor yet, they cannot cruise or walk although are making progress with both of these things. We are in physio and have been for about a year, they army crawl to get around and have done so for about ten months.

I suppose i am just looking for information, any tips on how I can help them or what I should be doing?

So far I’ve only had a phone call saying that they have it. They have referred to SALT as they can’t talk.

As well as SALT and physio, if DTs haven’t already been referred, I would request referrals to OT and, if they exist in your area, Portage.

If you haven’t already, apply for DLA. Cerebra has a helpful guide for completing e forms.

You can also begin the process of getting EHCPs for DTs. You can request an EHCNA yourself. IPSEA and SOSSEN are charities who support parents. They have lots of helpful information on their websites, including model letters you can use to request an EHCNA.

Ask around locally if there is an equipment lending library. For example, Gympanzees in Bristol.

Depending on where you are, there are sometimes sessions run for preschools like these at Ingfield Manor School in West Sussex and Paces in Sheffield. 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.

Thank you for your reply.

We were referred to OT a while ago but haven’t heard anything for a couple of months, I will chase this up.

I did have a look at DLA for them, I’m not sure they will qualify but I have called and requested forms and I will have a look. I’m not sure they need much more care than usual kids of their age at this point, although probably will in the future. Unless all of their physio would count!

I will look into what a EHCP is, I’ve not really heard much about it before!

Please do apply for DLA. If you look at the Cerebra guide, you will probably see you actually do more for DTs than you realise, and, yes, physio counts. You won’t get the mobility component at their age, but the care component can be awarded.

Thank you, I’ll look at the guide when the forms arrive. We could use it to pay for more private physio etc.

Yes, DLA can be used for therapies.

You could also use it to ensure you get a good comprehensive EHCP. EHCPs can include therapies beyond what is typically available on the NHS and more frequently.