The decision to put your baby on Sabril/Vigabatrin (VGB) is also not an easy one. Far from being the perfect treatment, it is one of the more effective ones (especially for TS) but can also carry many significant side effects, such as permanent and uncorrectable peripheral vision loss. Personally, we have decided to go with VGB as our second line of treatment, and documented tips to help others who may have also chosen to do the same.
There is less daily monitoring required for VGB. Other than mixing and administering the medication orally twice a day, there is also a recommended vision testing/exam every 3 months and a regular visual checking of eye color/skin tone for monitoring for the other possible side effect of kidney failure. Here is a guide and links to some resources and where to obtain supplies relevant to VGB.
Lundbeck(R) is the only manufacturer of VGB in the United States. It’s branded as Sabril(R). You can find more about it directly from their website.
We have private insurance (aka health insurance with a medical insurance company through work), so here are tips from our experience. Getting an $20,000 drug for the first time is not simple, but thankfully, the manufacturer helps a lot with the process with a free one-month supply. Thereafter, pharmacy (not any local pharmacy, must be specialized) can overnight the medication to you but for us, it took almost 2 weeks to process, so be prepared. You can’t just fax in a prescription to the pharmacy at 4pm and expect it to be overnighted to your doorstep by the next day. Instead, here are the steps to take:
- Sign the Agreement Form and the Treatment Initiation Form and have your doctor also sign/fill out and fax it, with the prescription, to 1-877-742-1002.
- Wait for call from/call Lundbeck’s SHARE (Support, Help And Resources for Epilepsy) at 1-888-457-4273 (1-888-45-SHARE). They will set up your free one-month starter supply and overnight it to you.
- About two weeks later, SHARE will contact you again, after finding you a specialized pharmacy (based on your insurance) that carries Sabril. If you don’t hear from them by week 3, call them.
- Optional step: Call your insurance company. Find out if your benefits helps pay for part of it. Double-check that the specialized pharmacy is covered.
- Call specialized pharmacy. Register the patient, if this is your first time. Make sure they process everything in time for the shipment to arrive before your current supply is depleted.
- Have your doctor fax the latest prescription to the pharmacy. Note: Pharmacies tend to be picky about dosage, even though being on Sabril often means different dosages from day to day while your doctor is titrating it specifically to your child’s needs. They may also want to know your child’s weight, to ensure that the dosage being dispensed is appropriate and will not ship without doctor verification.
- The specialized pharmacy will process everything, then call you for your mailing address and your payment or copay (if applicable, or bill you later for it). Always request that it be delivered at least a day (preferably 3 days) before you actually need it. We have had several delivery issues with the shipping carrier which delayed our medication by one or more days (worse if it happens to be a weekend).
- Pharmacy sends out the drug, you get it, check and store at room temperature.
Due to VGB’s side effects, you may want to ask your doctor about a taurine supplement to boost the retina. We bought taurine in powder form (easier to administer to babies & kids) from Amazon with the subscribe & save discount and free shipping. We also bought extra small measuring spoons (we use a pinch, which is 1/16 tsp, for Kaleb’s dosage) for accurately measuring the daily taurine intake.
Checking for Side Effects
Before starting Sabril (or within the first 4 weeks of starting it), it’s a good idea to get an eye exam. Either a clinical exam or an ERG test is acceptable. We chose to do only a clinical exam because (1) the ERG test is very invasive (involving sticking electrodes and wires directly onto the eye with a sort of contact lens) and stressful for both the child and the parents, sometimes even involving general anesthesia (2) even if there was loss of peripheral vision, it still outweighs the brain damage the seizures cause. So the big question is: would you stop Sabril if it was starting to cause some eye damage? For us, the answer was no, so the clinical exam was adequate. In the future, we can maybe get an ERG test to test his retina and peripheral vision but it will be when he’s older and more able to cooperate for the exam Maybe in the future, the test would not need to be so invasive .
Every three months, it’s good to get another follow-up eye exam to see how your child’s eyes are doing.
About once a day, it’s also a good idea to examine your child’s eyes for yellowness. Possible liver damage is a rare side effect and yellowing of the eyes and skin will alert you if such side effect is experienced.
VGB comes in a powder form. Each 500mg packet is supposed to be diluted in 10mL water and then dosed and administered according to the prescription. Drug stores sell 10mL syringes for $2+ each, which gets pricey with VGB regimes commonly running 6 months or longer. So instead I found these 10mL oral syringes from Amazon for $0.20 a pop in a pack of 100 but these even cheaper 10mL regular syringes work too at $0.16 a pop.
Due to the potential vision side effects, it is recommended to minimize light exposure to the eyes, so we invested in a pair of good, comfortable sunglasses. We tried Baby Banz and Babiators via Amazon, so there was free return shipping and kept the one we liked better and returned the other one (we happened to like Baby Banz better for a better fit on Kaleb’s head and more side coverage of his eyes). Several other families like Julbo sunglasses as well.
I haven’t tried it myself but apparently VGB doesn’t taste so great because all the IS kids tend to spit it out. Kaleb frowns and scrunches up his face every time he tastes it and promptly spits it out.
Due to regulations or whatnot, SHARE is not allowed to tell patients or their caregivers to mix it with anything but water. But they can talk to your doctor to relay the message to you at their discretion.
We got the “go” from our neurologist to mix it with apple juice, milk, or formula. So we chose apple juice (Kaleb hates formula too). You can consult with your doctor about mixing Sabril so your child will be more willing to take it.