new to scope — Scope | Disability forum

new to scope

chloesmummy
chloesmummy Member Posts: 4
hi
im new to scope.
i have a daughter who is 2yrs old and has just been diagnosed with spastic dipgelia cerebral palsy. after a year of fighting to get this diganosis i feel very defalted all of a sudden and very worried about my daughter being on her feet soon. i really want her to walk and she will be able to as she only has it midly, but i feel very unsupported from our health care proffessionals.
we have already had to make a formal complaint to our nhs trust due to misdiganosis. we was told that our daughter was lazy and she would do it in her own time and then a yr later we were faced with this diganosis.
we are currently waiting for the results from that.

i would just like to no if any one felt like this as i feel very selfish for feeling like this. every time i think about her walking i just want to cry it scares me.

thank you

xxx

Comments

  • renacahill
    renacahill Member Posts: 145
    It so annoys me when professionals overlook the obvious and parents and children are left to struggle. Sp. diplegia is often caused by prematurity or by something that happened before birth. I assume this is what happened to you as they are usually looking for problems is there are risk factors as was the case of my grandson Elli(traumatic birth).
    Anyway you must now start kicking and screaming for therapies to help your daughter. Scope could help you there, they have a helpline. Physio, OT, portage, hydrotherapy - there is lots of help out there but the NHS can be slow to get going (not in our case though, he was watched like a flaming hawk from birth!)
    You are still in shock and at the bottom of a very steep learning curve. Read all you can but dont be disheartened, you will get there. Your daughter needs stretching exercises, home physio etc. Get this book it is fab.from amazon 'teaching motor skills to children with CP' Siegelinde Martin. Lots of pictures, reassuring and imformative.
    good luck
    Kate

Brightness