daughter with quad cp

[emel121]

Hi all I have a 22 months old daughter with quad cp she has no head control can't sit up or do anything. I'ved been to the hospital today to see a consultant and he said she got severe cp which means she wont be able to do anything i came out there crying is there anyone who doctors told them there child wont beable to do anything and has prooved them wrong.

[SparklyGothKat]

hi, don't have a child with quad CP, but do have a son with diplegic CP and a daughter with diplegic CP too. My children can walk, but we were never told that they wouldn't.
Just didn't want your message to go un-noticed.

[CristinaTheAstonishing]

Emel, you could try Contact a Family, there must be other parents out there with children in the same situation and they might have some positive stories. You must be very upset at the moment.

[Jimjamskeepingoffvaxthreads]

My friend was told that her autistic dd would never say more than 3 words. She talks very well now. At 22 months they can't say for sure. I think it is important to find people in the same situation now, do you get portage, or any other services that might help you to find others in your area?

[emel121]

Thanks for your replies im always on the internet looking for answers but getting nowhere i just want her to beable to hold her head if nothing else she has got the most beautiful smile she does respond to you when we speak to her. she also has visual impairment which is one of the reasons she wont lift her head coz she cant see clearly the consultant told us.

[Jimjamskeepingoffvaxthreads]

Are you getting any help? There are children at ds1's school who I am sure would have the same dx as your dd (they sound very similar). You;'re not in the SW UK are you?

[SparklyGothKat]

you should join specialkidsintheuk there is loads of parents on there with children with CP

[emel121]

Thanks for your replies im always on the internet looking for answers but getting nowhere i just want her to beable to hold her head if nothing else she has got the most beautiful smile she does respond to you when we speak to her. she also has visual impairment which is one of the reasons she wont lift her head coz she cant see clearly the consultant told us.

[emel121]

i used to get portage only for 2 months she then started early intevention centre 2 days a weeks which is good for her she gets physio and speach and language. i am with specialkidsintheuk there very helpful. i live in souheast london.

[2shoes]

hi emel121
sounds like you need some support. where do you live?
my dd has afetoid cp affecting all limbs(suppose it would be called quad now) she is 11 now.
if you want to email me my email me let me have you address(sorry can't give mine out on here)
I don't like to give too much personal info out on here but hopefully will be able to help

[Alan]

emel121, do the early intervention centre do any carers groups you can go? it is rather isolating when your child gets first diagnosed as you feel you are the only person that 'this' is happening to. Have you looked at www.scope.org.uk?

A family friend has severe quad CP and mentally/academically he is age appropriate has even obtained a degree with the help of a support worker to guide him. His physcial disabilities are overwhelming but inside that body is a very intelligent man. For the consultant to say your daughter 'will do nothing' is pretty heartless.

[littlerach]

Hi, my stepson has quite severe CP, think it is quad.
He is in a wheelchair and has v limited use of his arms and upper torso. He does manage to hold his head up, but it is an effort to do so.

He was diagnosed when 9 months, and dh always knew he wouldn't be able to walk. The consultants ween't able to predict his speech etc, but he is now almost 12 and can speak reasonably clearly.

He has attended mainstram primary, although academically he has not kept up with his peers, and socially has done well. He will attend a special school for secondary as he has such complex needs, inc v impaired sight (actually been reg blind now).


His mum had found it a real battle to get him into the school, but previously she has had a lot of support, even with some respite care, from outside the family.

\i hope you get some support, and the SN board here os fantastic.

[fairydust]

we have a 4 yr old dd with diplegic CP and was told she was unlikely to ever walk and if you could see her now - she can't can't far and falls often she does get about.

[2shoes]

emel121 do hope you get in touch

[Pixel]

Hi, I don't know anything about CP but when I saw your thread I thought of this little boy who was featured in the Express today. His parents were told he would never speak, eat solid food, sit unaided or bear weight and now he can do all those things. I've linked to his website which I hope might be useful because I didn't know how to do the newspaper article.