DD Diagnosed with CP

heavensbug

Hi all,

I apologise now if this is a bit babled but here goes.

We have been through the wringer a bit with NHS and treatment of our daughter. Well this morning we went for an appointment with a consultant "Finally" and he has diagnosed our eldest daughter (By 1 minute )with cerebral palsey.

So filled with the where do we go from here etc one of the things that went through my head is disability.

I am not one to claim off the state but if there is something that can make my daughters life easier then I am going to get it for her.

The consultant says it is a very mild form of CP and will probably only affect her walking. She tip toe walks but this does mean that she gets tired very easily and is obviously slower when she'a walking than her younger sister.

Which means we tend to use the buggy a lot more.

So I am wondering where we go from here. It seems a bit of a mine field which I am starting to pick my way through.

So if anyone has any advice please throw it out there.

Thanks in advance.

dmg24

How old is your daughter heavensbug?

heavensbug

She is 2 years and 3 months.

dmg24

It is very difficult for children to receive DLA, and in the circumstances you describe, I doubt she would qualify.

DLA Care is available for children who have care needs over and above those of a child their age. From what you have said, she does not appear to have any additional care needs.

DLA Mobility is available for children aged five and over, or at age three when the child's needs are very severe.

There is more information on DLA for children here.

heavensbug

Thanks DMG

I thought that would be the case.

Its just trying to get my head around everything available to her from treatments to time off work etc.

Thanks for the info.

dmg24

I'm just running out the door, but if you go to www.direct.gov.uk and search for 'time off for dependents', you'll find some helpful info.

jennihen

I did receive Dla - LRM - for my youngest for a year when she was very little. When it ran out I didn't reapply because her problems were negliable.
Having said that she had a pretty intensive years worth of OT, PT and other specialist appointments.
She was very prem with minor CP affecting one side of her lower body.
She was tippy-toed too but one of the tricks we were shown was to sit her on her potty as much as possible - even though she wasn't actually potty-training at this time. It helped adjust her position so her feet were flat on floor. Also swimming and trampoling from the earliest age possible.
Hope this helps! we were told DD2 would probably never walk or talk but she was cleared by the Paeds before she started school at 4 years old.
I received during that time a letter from a social worker introducing herself - think the hospital referred me as I was newly seperated with two other children - she helped me do the DLA forms which helped. I picked her brains for all the groups, support etc. - maybe thats worth a phonecall??
Good luck
JH

Indie_Kid

Have you been put in touch with any support groups or anything in your area?

heavensbug

Nothing from the Docs.

NHS round us is less than useless. Pretty much going it a lone at the moment. Just starting to get our heads around it so will start looking at support groups etc next few days.

Got another appointment with the Orthopedic guy who just sits, fiddles with DD's feet then sends us out the door.

So don't really know where to turn

jmabnc

Hi heavensbug, My DD has CP,only her cp is down oneside of her body,as she is seen more by the doctors etc and gaining her milestones they should know more(CP affects ALL children different !),try not to worry,ask as many questions as you feel you need answered,you will get the help you need and your family also,support groups are a lifeline,we belong to Hemihelp,the people are very helpful,sorry I cant help you more,things will get better in time. Good Luck.

longhotbath

Hi Heavensbug, your county council will have details of support groups within your county - try surfing through their websites.

Face to face is a national charity that puts newly diagnosed parents in touch with befrienders, who are also parents of disabled children to help them through this very tough time, and to help them access the support and information that they will need.

Please feel free to pm me, if I can help. (ds1 has cp)

Best wishes, LHB