Miss A has a rare form of cerebral palsy (CP) ataxia. I was told less than 10% of all CP sufferers have it.
From Wikipedia:
Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth or after birth up to about age three.
http://en.wikipedia.org/wiki/Ataxic_cerebral_palsy
http://www.cerebralpalsy.org.au/about-cerebral-palsy/basic-guide-to-cerebral-palsy/types-of-cerebral-palsy/movement/ataxia
For A it affects her in a multitude of ways. She is low tone in many body areas, unbalanced, has a tremor when doing certain tasks both in the hands and feet, slow eye movement or tracking, depth perception issues, spatial awareness and more....
When we first got the diagnosis I tried to find as much information about it as I could.
There really isn't much out there. Even on websites dedicated to CP ataxia generate a few paragraphs at the most.
When we got this diagnosis a lot of her symptoms fit but some were unusual. She was a toe walker for a long time and preferred the feeling of walking on her toes to the point that her calf muscles overdeveloped. For a child with a wide gait and balance issues it was unusual. We later found out that she had Sensory Processing Disorder too and that toe walking was a way for her to increase sensation. Her calves tightened, she had to concentrate more and her low muscle tone was actually increased. Instead of floppy muscles she was tightening them herself.
For Miss A the major signs of her CP are:
Loose jaw msucles and low sensation in her face
Hypermobile joints
Often trips over
Low depth perception
High pain threshold
Shaky hands when concentrating
As she is mild a lot of people don't get to see these on a casual basis. I hope that by talking more about it people can understand how ataxia affects her and how it displays itself.
Never bothered by hair in her face.....
Loves wearing her bathers or leotard.
Never has settled sleep....
I know this is an older post, but I'm just scrolling through. It's so hard when things aren't easy and normal. In a way, I'm glad you have a diagnosis and seriously hope you're getting all the support you need.
ReplyDeletexx