10 Things you should know for a better understanding about Cerebral Palsy / Periventricular leukomalacia 

1. PVL – (Periventricular leukomalacia) is a type of brain injury that is most common in babies born too soon (premature) or at low birth weight. The white matter (leuko-) surrounding the ventricles of the brain (periventricular) is deprived of blood and oxygen leading to softening (malacia). The white matter is responsible for transmitting messages from nerve cells in the brain so damage to the white matter can cause problems with movement and other body functions.

2. The outlook for children born with periventricular leukomalacia depends on the amount of brain tissue damaged. Some children will have minimal problems but others may have severe disabilities.

3.  Periventricular leukomalacia is not a progressive disease, that means it will not get any worse as a child grows older.

4. Periventricular leukomalacia (PVL) is an umbrella term for quite a lot of medical conditions ranging from mild to complex.

Raising awareness for Periventricular leukomalacia until everybody understands

From PVL diagnosis to Cerebral Palsy

5. Periventricular leukomalacia is an umbrella term for so many medical conditions Cerebral palsy being one of them. Cerebral palsy presents with so much variability that saying someone has cerebral palsy doesn't offer much insight into the individual at all.

Management not treatment

6. it's important to remember you can not therapy PVL/CP out of your child. There is no treatment to cure your child.  You can manage your child's diagnosis through massage therapy, physical therapy, speech therapy, and treatment for visual dysfunction.

7. Spastic quadriplegic cerebral palsy means All four limbs are affected, as well as the torso and face.

8. Children with quadriplegia often have co-occurring disorders, such as epilepsy

9. Some days are really shit. From all day hospital visits, unexpected hospital admissions &  crying for 12 hours straight. 

10. Your child is disabled but they're not their disability.

Sometimes I don’t know how to feel, what to say or how to act. This blog only reflects our own experience with cerebral palsy, a small window into a big world. Recently received A diagnoses check out; Health Diagnoses now what?

Take a look at my resource page for organisations & charities who can offer support.

N x

This blog post was in collaboration with #SEND30daychallenge 

  • Ritu Kaur BP

    All such important info to consider.

  • ellen best

    Sometimes we have to look very hard to see through the fog. X Your doing good #sharingSaturday.

  • Peabody Amelia

    Thank you that was educational for me and others

  • Thank you for sharing this information. It’s important that we all become educated about this and other disorders.

  • Great information, dear!

  • I have CP, it’s not all I’m about but inaccessible buildings are a thing.

    • My daughter’s wheelchair is currently the size of a buggy so I haven’t come across any restrictions yet! I can’t imagine I will do as she grows in size.