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*Updated April 10, 2010*
Stacy received a call this afternoon from a woman that has been assigned as James’ case worker as we enter into the world of Vigabatrin/Sabril. She works for a company called Lundbeck who makes Sabril, the brand name of vigabatrin. As our case manager, she will help us through the prescription process, and answer any questions we have. At the time she called, they had not yet received the paperwork they needed the neurologist’s office to send over. The neurologist’s office said they sent it over this morning.
While they are waiting for the paperwork to arrive, she emailed Stacy some paperwork to read and fill out before James can start this drug. We went through it when I got home from work, and all I can say is holy crap! This is some scary _ _ _ _!
As I mentioned in a previous post, the neurologist had already warned us that there is a potential for vigabatrin to cause irreversible vision loss, but looking over this information that we have to read and fill out, it almost feels like we are signing James’ life away. Or, in this case, signing his eyes away. We know his vision is already compromised with the optic nerve that didn’t fully develop in his left eye. Do we want to risk causing more damage to his eyes?
I won’t post everything here, but here is a sample of some of the warnings for Sabril/vigabatrin that pertain to James:
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- Because SABRIL might cause permanent vision loss, it is available to healthcare providers and patients only under a special program called the Vigabatrin Risk Evaluation and Mitigation Strategy (REMS) Program. Your healthcare provider will explain the details of this Program to you.
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- SABRIL can damage the vision of anyone who takes it. Some people can have severe loss particularly to their ability to see to the side when looking straight ahead (peripheral vision). With severe vision loss, you may only be able to see things straight in front of you (sometimes called “tunnel vision”). You may also have blurry vision. If this happens, it will not get better.
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- Tell your healthcare provider right away if you (or your child): might not be seeing as well as before starting SABRIL; start to trip, bump into things, or are more clumsy than usual; are surprised by people or things coming in front of you that seem to come out of nowhere; or if your baby is acting differently than normal. These changes can mean that vision damage has occurred.
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- It is recommended that your healthcare provider test your (or your child’s) vision before or within 4 weeks after starting SABRIL, and at least every 3 months during treatment until SABRIL is stopped. It is also recommended that vision be tested about 3 to 6 months after SABRIL is stopped. Your vision loss may get worse after you stop taking SABRIL. It is difficult to test vision in babies, but to the extent possible, all babies should have their vision tested. Your healthcare provider will determine if testing can be done. Regular vision testing is important because damage can happen before any changes are noticed.
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- Brain pictures taken by magnetic resonance imaging (MRI) show changes in some babies after they are given SABRIL. It is not known if these changes are harmful.
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- A type of swelling in the brain called Intramyelinic Edema (IME) has been seen in autopsy examination of babies treated with vigabatrin.
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- SABRIL can cause serious side effects such as low red blood cell counts (anemia), sleepiness and tiredness, nerve problems, weight gain, and swelling. Because SABRIL causes sleepiness and tiredness, do not drive, operate machinery, or perform any hazardous task, unless it is decided that these things can be done safely. SABRIL may make certain types of seizures worse. Tell your healthcare provider right away if seizures get worse.
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- The most common side effects of SABRIL in babies include: sleepiness—some babies may have a harder time suckling and feeding or may be irritable, swelling in the bronchial tubes (bronchitis), ear infection, and irritability.
After reading the above warnings, and knowing that your child’s eyes are already compromised, what would you do? Of course, we want to do whatever we can to get rid of James’ infantile spasms, but do we want to risk making his vision worse than it already is? Stacy and I will have to really think about this and talk to the neurologist to see if there is something else we can try first.
*Update April 10, 2010:
We spoke with the neurologist today have decided to hold off on Sabril/vigabatrin for the time being. Instead, we are going to try another medication called Keppra. We still have a few days before James is completely off of ACTH; we’ll start the Keppra a few days after that.
Please pray that Keppra works to get rid of the infantile spasms and we don’t have to resort to Sabril/vigabatrin.
