Cerebral Palsy/chromosome deletion

[MummyClaire]

Hi there, I'm new here. My son Milo is 16 months and has ******* quadriplegia cerebral palsy, meaning he is floppy down his middle but his arms and legs are rigid. Because of this, he still can't hold his head up or sit or even sit comfortably in a buggy. He will never walk, that much is for certain, and he has trouble holding things because his thumbs are stuck in.

He also has a chromosome deletion so rare is hasn't even got a name and the genetics professor couldnt find any info on it, so basically there is no prognosis for Milo, we just have to wait for him to write his own rules!

He also cannot eat and after fighting for 9 long, hard months, we gave in and he's on an NG tube now. It's actually the best thing we ever did for him. He's due to have a fundoplication to fix his reflux and a PEG tube fitted for us to feed him with.

His cerebral palsy was caused by his birth and the rough time we both had. We're looking into whether it could have been avoided.

I don't know anybody with a child like Milo and I live in a tiny village in Wales, so if anyone can talk to me and shed any light, or even just have a chat, that would be much appreciated. Thank you for reading this far! x

 

[Aidedhoney]

Hello MummyClaire and Milo

Didnt want to read and run, Welcome to BnB.

 

[kirsten1985]

Hi MummyClaire and Milo

 

[chetin12]

Hi there Milo and Mum,
I just wanted to say that I also have CP all be it mild and could not read this post without getting in touch. I realise that their is not much out there in the way of information for people with CP. Although I have found Scope to be a good source of information.

I have also found this book called Health Options- complimentary Therapies for Cerebral Palsy and related conditions by Andrew Vickers
ISBN:1-85230-562-2

This book is a few years old but well worth a read.

Wishing you the best of luck

Chet

 

[angelstardust]

I second Scope.

Christopher has hemi, so only one side and is moderate, so he is pretty mobile. He has speech problems, and has just turned 5, we are using Makaton for him.

The only thing I can advise you on is speech as Milo sounds like he has more physical problems that Christopher has (or had) so I can't help with that side of it.

Does Milo have any learning disabilities? Does he have some way to communicate with you? If he is able to, I would suggest you look into Makaton symbols. The idea is that he points as pictures to explain his needs to you. If you are interested I can email you some sheets with some symbols, just send me a PM, I may not reply straight away (the kids have all been ill all week and now I'm pretty rough myself), but I will get round to it!