Well today we had Finnian's ERG test done. Its a test he has to have done to check his retinas as he is on the drug Sabril(Vigabatrin). So the results we got from the doctor were his right eye which is also his smaller eye his cones have a slower uptake but his rods were good. In his left eye there were better results on both the cones and the rods. He had a good reaction with the cones but a great reaction with his rods. This does make sense as we have always found that Finnian is more visually aware at night and also in low light.
What does it mean in terms of the keeping him on the drug? We will just have to wait for the full report.The doctor wants to go over his other results and have a chat with his regular eye doc.
What people have to keep in mind is that our Finnian has been on Sabril since Dec. 2005 and the currrent dose he is on he has been on it for about 2.5 years. Some may question our decision to use a drug that has known side effects of damaging the retinas but when you watch your child have seizures that can go on for 20 + minutes you know you have to make decisions. For us being that Finnian has cortical visual impairment what it means is the part of the brain that proccess what we see is damaged and it is a hot point for seizures it was a no brainer. We had to stop the seizures.
Now hopefully he is at the age where he will out grow the infantile spasms that usually happens around the time the child is 5 years old which our lad will soon be. We might be able to take him off the Sabril but to be honest its not something I am looking forward to.
3 comments:
Is it FDA approved now?
Hudson was on it for quite some time, but we had to get it from Tijuana!
Just when I thought the I.S. could possibly have come to an end, and what do I see as I walk in his room this morning? Hudson in the midst of having a big ole' cluster of spasms!!!! Grrrr....my week is not going well!
Hope you guys are doing better than us!
Hi Geraldine hope you all had a lovely Christmas. Did Finnian enjoy Christmas well got to run again have a meeting in 10 mins all our love Gary, Mekila and Baby Katie
Debbie,
Sabril became available in the end of Sept of '09. THe thing is the doctor has to sign up with the SHARE network. THen They fill out the paper work and send it back to SHARE with all your insurance info. Then a rep will contact you and set up delivery. We get ours via UPS. You cannot go to the pharmacy to get it. It has been approved but with major protocalls. They want the ERG to be done every 3 mths they want labs to be done.
We used to get our Sabril from BC in Canada but I have heard of people gettin it from Europe, Canada and some of the Islands.
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