Change of diagnosis after MRI - DD now has Spastic Diplegic CP. - Any advice?

[Jenkeywoo]

DD (22 months) was diagnosed with Hemiplegic CP (right side of her body affected) last May. She wasn't doing too well until we started CE in November and since then she has learnt to crawl and also pull to standing. We have felt that both legs and both arms are affected for some time, and requested an MRI to find out more info. We saw the paed yesterday for the results and dd has damage on both sides of her brain and has been re-diagnosed with Diplegia with arm involvement. The main shock has been that the paed says it will take her much longer to learn to walk - but of course won't tell me how much longer. She has also told me that dd will need splints on each leg and I am worried that they will be very hard for her at first as they will stop her crawling and pulling to stand etc. I would love to hear anyone who experience of mild diplegia and can give me some hints/tips/info etc.

Thank you.

my dd is quadraplegic and has damage on both sides. But your child hasn't changed from before the MRI. crawling and standing are fantastic. Have you got her a walking frame yet? That may help with getting her going.

Sorry that you are feeling shocked by the change of diagnosis. I don't know very much about CP, but just wanted to reassure you that splints are a lot less scary than they sound, my friend's DD has had to wear them, I wouldn't have thought they would interfere with your DD's movement.

dd wears affo's is that what you mean. she only wears them for weight bearing.

my dd has wrist splints to keep her hands from turning in (she has no hand function at all) and affo's to hold her ankles and feet in place. She can't stand either but we put them on when we strap her in her standing frame.
You can get affo's that are hinged at the heel for when a child walks. Fixed affos are just for standing.

Thanks, I'm feeling a lot better already and I'm sure dd will keep doing well whatever diagnosis you give her.

Hi Jenky, my ds2 has mild spastic diplegia, his arms are involved but as he has built up body strength its onlt his fine motor stuff that he struggles with as far as his arms are concerned.
As a baby his physio also said he had a right sided weekness but his dx was changed at when he was 2.5.
He walks very well now with splints on both ankles (DAFO'S), he struggles with distance & is a bit stumbly but all in all doing very well.
Hopefully the correct orthotic support will help your dd get mobile.