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James is still having infantile spasms (IS). When he was first diagnosed with IS in February, the first drug we tried was the ACTH injections. That was supposed to be one of the best available treatments for infantile spasms. When that didn’t work, the next drug that the neurologist recommended was Sabril (vigabatrin), but after reading over the paperwork we had to sign and reading the “permanent eye damage may result” warnings, we decided to try other drugs first. James’ eyesight is already compromised, and we didn’t want to cause further damage to them.
Seven months after the IS diagnosis and continuing to watch him have these uncontrollable spasms, we think it is time to try Sabril (vigabatrin). We’re out of options here. We were really hoping some of the other drugs would bring these infantile spasms under control so we could avoid the possibility of worsening James’ eyes. This has been a really tough decision for us, but we don’t know what else to do. He has been seeing an eye doctor so we have a baseline of where his eyes are now. Once we start Sabril, we will be seeing the eye doctor more often so that he can look for any changes in his eyes.
I hope that we are making the right decision. Please say a prayer for James. Pray that this drug finally cures him of his infantile spasms…and doesn’t take his eyesight in the process.