He has been trying a new medicine which is only available in Europe. You never know if this will be the one. It costs approximately $1200 per month
Stiripentol is the drug. Kids and adults that are on this have had great seizure control sometime years between seizures. We are hopful. It has been approved by for use in the US on a case by case basis and paid for by Medicaid and even some insurance companies, but as with anything with our healthcare it is a process. It is available for purchase and we do have a prescription from his Neurologist.
He really should be on 1000 mg's per day, but because we don't have much of it we are trying a lesser dose. We want to get him to where he needs to be as soon as possible.
We have had a generous person donate about 3 months of this medicine. We have used two and only have one (1) month left. We need to replenish his stock until he can get it approved and paid for.
We are working through the process to get it approved and paid for by Medicaid but it is slow. We want to get a 3 month supply for him so that we can work through the process. Again it is about $1200 per month. We have a month supply currently so we need to get this going.
Anything you can do to help in this cause would be appreciated.
Sincerely Craig Pearce (Grandpa)