Eden Medical Update

About 10 days ago Eden had an eye exam to check her eyes since getting the shunt out. Unfortunately, her optic nerves looked really swollen again, worse than they did in December when the shunt was still in. Next step... check the pressure.

So the following day (a week ago yesterday) we took Eden in for a lumbar puncture. Unfortunately her pressure was high again. The neurosurgeon told me that she needed a shunt back in. At this point, I was feeling somewhat desperate so I peppered him with questions about the possibilities of doing something other than a shunt. He said he felt the shunt would be best, but because of my persistence, he said he would take a couple days to review her records and do some research to see if there was anything else we could do.

I immediately came home and spent the weekend doing research of my own and found information about a medication that has been used to treat high CSF pressure and papilledema. I sent all this information to the nurse practitioner and asked her to talk with the neurosurgeon about this medicine.

Monday morning I got a call back that if we wanted to try a medication route, rather than a surgical route, that Eden would need to be seen by a neurologist who would prescribe and follow that treatment.

So Thursday we got in and met a neurologist who I really liked. She came to the appointment already having reviewed Eden's extensive medical history and she spent about an hour with us (which is a LONG time for being with a doctor). She said that earlier in the week, a team of neurologists and neurosurgeons had discussed Eden's case and that they were all somewhat baffled about what is going on with Eden. There is no identifiable reason her pressure is high, and she doesn't exhibit one single symptom of the problems she is having. She continues to be a medical question mark.

The neurologist felt that trying this medication was a good plan though. She has used it to treat similar problems, but not as often in little children. We discussed the possible side effects which all seem very minimal in severity. So we have decided to give this a try and see if it will help. The plan will be to follow up with the eye doctor probably in a few weeks to see if the papilledema is getting better, and then we will go from there.

Here's to possibly avoiding the shunt once again!