New Meds

Georgia has struggled with seizures since birth. She has been on Keppra since she was 3 weeks old and Trileptal since sh was about 1 year old. Even with these medications she was still having break through seizures. For a while she would only have a seizure every 3 days or so but now she is having maybe 10 seizures every day. Her most common seizure looks like a startle. She also has tonic/clonic seizures which put her in the hospital emergency room about every 3 months. Sometimes these tonic/clonic seizures can last up to 3 hours. They are generally set off by her getting too hot or too mad. Georgia usually doesn't seem to mind her seizures so I've never really worried about it. In May of this year Georgia had abductor release surgery and was given Valium to help with muscle spasms. I noticed while she was on Valium she didn't have any seizures. I talked to her special care doctor who talked to her neurologist about putting her on a small dose of Valium daily. Their concern was that Georgia takes Diastat (a form of Valium or diazepam) for her tonic/clonic seizures when they last longer than 3 minutes, its her rescue drug. Their concern was that if she was on Valium daily that she would develop a tolerance for it and we wouldn't be able to use it as a rescue drug. Instead, her doctors decided to prescribe Onfi (clobazam) which is also a benzodiazpien but is specifically for seizures. I thought great lets try it. I went to pick it up from the pharmacy and it was $200 for a 30 day supply and my insurance would only cover half. NOT GREAT! With all of Georgia's medical bills we simply can't afford an extra $100 a month for prescriptions. So I called the doctor back to see what we could do. She said some patients get the Onfi from Canada where it is much cheaper (of course she wasn't recommending that I do this, she was just sayin'.) So I called a pharmacy in Canada and yes they did have Onfi and it was only $45 for a 90 day supply but they were no longer able to ship it to the United States because the FDA wouldn't allow them anymore because the drug is now available in the U.S. Insane, I know. But the pharmacy said if I had a way to pick it up they could do it. I then set out to find myself a drug mule to go to Canada, get the drug and bring it to America. What you don't do this kind of thing on a typical Wednesday morning? Luckily I have a friend who lives near Seattle who was willing to go get it and mail it to me. I also figured I would try the drug company itself to see if I could get some sort of a discount. The drug company was willing to offer $50 off. That still meant I'd have to pay $50 a month for this med, still not doable. The drug company was kind enough to put me in contact with a non-profit organization that helps with prescription drug costs. After over a month and probably 50 phone calls between doctors, the insurance company, pharmacies, the drug company and the non profit organization I was finally able to get the medication paid for without having to use my friend as a drug mule or breaking international laws. On Wednesday we started Georgia on the new med. She has been very sleepy and drugged out and we haven't even made it to the right dose yet. Its heartbreaking as a mother to see your child suffer, but its almost as hard to watch them in a completely drugged out state. I'm hoping that after a while her body will adjust to the new medication and she will return to her normal self. Luckily it does seem to be working for her seizures.