Raised intracranial pressure

[TammyC123]

Anyone with alagilles or any liver condition got raised intracranial pressure with bilateral papildemia? Pressure on the brain? Curious to get soaking to another family experiencing something similar to myself. Thanks

[Ali1]

Hi - Our 18-year-old daughter has Alagille Syndrome, and also has intracranial hypertension, picked up at a young age. She is largely symptom-free, but the pressure on her optic nerve is monitored on a regular basis. She was on medication to control the condition, but this has been reduced over time and has recently been stopped altogether to see how she responds. She also has impaired visual fields (hemianopia) in both eyes - this is also monitored. Hope that is helpful to you.

[Emma-676]

Sorry I have no experience with this but my son has alagilles. Can I ask how it was picked up? We're there symptoms which lead to investigation?

[Ali1 in reply to Emma-676]

Hi Emma

This was all a very long time ago now, but I think it was picked up during routine check-ups following initial ophthalmic tests used in the diagnosis of AS when our daughter was a baby. I don't recall any symptoms leading to specific investigations, but it has been monitored via ophthalmic tests, and occasional lumbar punctures over the years. This does seem to be a feature associated with AS (but not present in all cases) - the main concern seems to be about the risk of long term damage to the optic nerve and related loss of vision, and the monitoring was intended to pick up on and respond to any signs of change at as early a stage as possible. Hope that is helpful. This is just my understanding, and I'm sure a medical professional involved in your son's care would be able to give you fuller (and more reliable) information.