new to scope
Options
chloesmummy
Community member Posts: 4 Listener
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
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
-
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
Categories
- All Categories
- 13K Start here and say hello!
- 6.6K Coffee lounge
- 69 Games lounge
- 385 Cost of living
- 4.3K Disability rights and campaigning
- 1.9K Research and opportunities
- 199 Community updates
- 9.2K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 768 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 586 Dating, sex, and relationships
- 363 Exercise and accessible facilities
- 737 Transport and travel
- 31.6K Talk about money
- 4.4K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.1K PIP, DLA, and AA
- 4.9K Universal Credit (UC)
- 6.2K Talk about your impairment
- 1.8K Cerebral palsy
- 869 Chronic pain and pain management
- 180 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.2K Mental health and wellbeing
- 317 Sensory impairments
- 818 Rare, invisible, and undiagnosed conditions