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SPASTIC DIPLEGIA - anyone else coping with this ?

(6 Posts)
SweetPotato Sun 26-Jun-05 21:00:03

DD is 14 mths and just had diagnosis of CP / SD confirmed and I am a bit wobbly really. We have been told that hopefully it is just her legs that are affected, and to be optimistic that she will walk eventually ................... but frankly it is all very airy fairy anf hope and see and no promises about anything and I am beside myself with worry about the future.

She sees the physio fortnightly and apparently all we can do is exercises daily and hope for the best.

Is anyone else going through this? Would you mind sharing your experiences on here - I just want to know what other people have been through / are going through - the good and the bad! I just cant imagine what the next few years are going to be like.

misdee Sun 26-Jun-05 21:17:00

sparklymieows 2 older kids have it.

lou33 Sun 26-Jun-05 21:28:15

i have a child with it as well, he is 4, the youngest of 4

the thing about cp is that there is such a varying degree of severity. Iirc sm's kids can both walk, whereas my ds is in a wheelchair, and will most probably need one for the rest of his life, even if he manages short journeys using sticks.

We haev regular weekly physio sessions, we have an ot and from time to time , hydrotherapy. We have also just done a two weeks intensive therapy session at the Bobath centre in n london, for which the pct gave us funding for.

I would recommend calling scope as well, and having a chat to their helpline staff, lovely people.

misdee Sun 26-Jun-05 21:29:45

mieows kids can both walk, tho they will probably need wheelchairs more in the future, her ds uses ones at times. he had botox treatment which helped for a few years. if isee her about i'll bump for you.

missycantstop Mon 27-Jun-05 09:29:32

my 2 and a half year old has it. he had a check up 7 months ago and they said he was doing really well up until last week at another check up when they said that they have noticed that it affects his arms alot more now than what they have seen in the past with him.

sparklymieow Mon 27-Jun-05 09:56:24

My 7 year old son and my 5 year old daughter has Spastic Diplegia CP. The both walk, but it told my DD a long time to learn. They are very naughty too
Ds is affected mainly in his legs, left more than right, he is mildly affected in his arms. DD is just affected in her legs.
They wear AFOs and DAFOs, DS wears gaiters at night, and they both have upsuits too.
Ds uses a wheelchair for long distance walking. Dd1 has a buggy but she doesn't use it much, unless we are walking a lot.
They have block sessions of physio every few months and we do physio at home.

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