Find out how to let us know if you're concerned about another member's safety.
different types of CP
I'm really confused about the different types of CP, my daughter has not officially been diagnosed. When I mention it to her Physio she just gives me a sympathetic smile & says "she's so young yet & had a traumatic start to life", but I know it's more than that. She has calcification to her basal Ganglia caused by a congenital viral infection called CMV..(Cytomeglio virus or similar spelling!!!!) All 4 limbs are stiff ( have loosened with physio) she is fed by N.G tube, her head will always go to same side & cannot yet hold her head at nearly 6 months. Limbs are very relaxed when in a deep sleep, she does'nt suffer from involuntary movements but does dribble a little bit, but she also suffers from reflux & dribbles most when refluxing. I know she is young for a diagnoses but feel frustrated that can't get a straight answer from anyone, I need to get my head around it & know a little about what to expect in the future. What type of CP is worse?? What type do you think Lucy has?? Is there anyway of knowing now if she'll be a wheelchair user?? The most upsetting thing for me would be if she cannot speak is there a warning sign for that?? I know by now I should have come to terms with it all but I can't seem to pull myself togther, I'm sad all of the time. I feel angry at the world & ashamed to say feel very little love for her, I'm sure it will come but at the moment i'm struggling. Been invited to take her too a special needs nursery it's brand new & lovely I'm sure but I don't think I can handle seeing the children there, it's like a glimpse into my future which scares me, so sick of putting on a brave face only to fall apart when I'm on my own. I'm sorry I sound so pathetic, she's lucky compared to some kids. What sort of age did your children start to achieve things like rolling over, sitting up etc??
- 52.9K All Categories
- 10.4K Start here and say hello!
- 4.8K Coffee lounge
- 4K Disability rights and campaigning
- 1.5K Research and opportunities to get involved in
- 148 Community updates
- 12K Talk about your situation
- 1.7K Children, parents, and families
- 756 Work and employment
- 574 Education
- 1.1K Housing, transport, and independent living
- 1K Aids, adaptations, and equipment
- 276 Dating, sex, and relationships
- 263 Exercise and accessible facilities
- 21.2K Talk about money
- 2.1K Benefits and financial support
- 4.4K Employment and Support Allowance (ESA)
- 12.3K PIP, DLA, and AA
- 2.4K Universal Credit (UC)
- 4K Talk about your impairment
- 1.3K Cerebral palsy
- 673 Chronic pain and pain management
- 699 Rare, invisible, and undiagnosed conditions
- 751 Autism and neurodiversity
- 925 Mental health and wellbeing
- 297 Sensory impairments
Complete our feedback form and tell us how we can make the community better.