The FDA has approved Sabril(Vigabatrine). THe only catch is its only available through SHARE. So you have to get your doctor to register with SHARE once they do they can write the scripts and you have to sign papers for SHARE to allow your child to get the meds. You have to get the Sabril from a SHARE pharmacy. So everyone knows what I will be doing tomorrow morning? Yup finding out from my insurance if they will cover the cost of the drug well besides my copay. but now if the cost of the drug is more than what it costs to get my 2 mth supply from Canada I might think twice about it and see if I can still get it from Canada. It due for distribution mid to end of September. I will have time to find out before Finnian goes through the last shipment we just got from Canada.
There are alot of rules to follow but I do wonder if Finnian will be exempt from getting his Retinas checked out. We do get them checked 1 time a year but since Finnian is basically blind the extent of his vision is not known and sometimes he does not react to light its not anything to do with his eyes its the part of the brain that process what he sees doesn't work.
Will update when I find out more.
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