Rylie had her orbital ultrasound on Thursday and now I'm more confused then ever. The ultrasound revealed that there is no fluid causing the swelling on her optic nerves. This is called Drusen or false papilldema. True Papilldema is what we've been dealing with all this time. In other words her optic nerves just have a swollen appearance because she was just born this way. It explains why the medicine has never worked to decrease the swelling. She was put through hell to be diagnosed with Pseudotumor and all along it was Drusen.
But it's still a little tricky and confusing. Why wasn't this ever detected by the ophthalmologist all these years? Well because Drusen becomes more visible to an ophthamologist as a child gets older. Maybe the medicine worked and that is why the ultrasound revealed no fluid. Doctor said that's possible, but not likely, because the optic nerves still appear swollen. Why when she had a spinal tap did it reveal a high opening pressure? Well that high number may just be Rylie's normal(because of Down syndrome). Not really convinced about that one. Drusen can still cause vision problems, but it's rare. Unlike Psuedotumor which is very vision threatening.
Rylie was taken off the medicine and will go back to the doctor in 3 months. I'm just going to pray we go back to normal now and nothing else develops. Her vision has been fine throughout this whole ordeal.
Listen Down syndrome Moms, If your ophthamologist ever looks into your kids eyes and sees swelling of the optic nerves, make sure the very first test ordered is an orbital ultrasound! Because the ophthalmologist said Drusen is very comman with kids who have Down syndrome.
I'm still confused about everything! The good news is I think I finally learned how to spell ophthalmologist. Ha!
ALSO, PLEASE CONTINUE TO PRAY FOR MY DAD. HE NEEDS MAJOR PRAYER. HE'S WAXING AND WANING. HE WILL PROBABLY NEED A FEEDING TUBE. WE NEED A MIRACLE. GOD CAN DO MIRACLES AND HE HEARS OUR PRAYERS!