Seeing doctors that have experience.
G-Tube insertion - February 2009. Significant contributor to Ben's quality of life and health.
My parents are my biggest advocates
Pontocerebella Facebook group
blended diet
My 9mnth old son is on a variety of medications to control his dystonia that have made a great difference.
Finding other families affected by PCH
My mum and dad how always fight fore me
Gastrotube for medication
Testing for genetic mutations
Pediatric doctors team at clinic.
She is in multiple therapies a week
Family doesn't judge
keeping active
Joining the facebook group has let me know that as a pch mum i am not alone
Lots of activities for people with disabilities
Personal help care
Tough and lovely therapists
Finding a support group
My Mommy staying home to take care of my has improved my health
friends and family support
Reading various medical studies has helped a great deal . Hust waiting on genetic test to determine the type my son has i suspect type 2
Having lots of supportive friends and family
All my different swings. I love to swing and have many different swing, outside, inside, to sit on and lay down in.