Brextin has been on Vigabatrin ever since he was DX with Infantile Spasms at the age of 4 months. The drug has been illegal in the US until just recently - due to possible vision loss - however the FDA has just approved it for the US - however regular eye exams are required and a ton of paper work needs to be filed. Since we couldn't get it in the US we had to buy the drug from Canada which means the drug was never covered by insurance - so we as parents are grateful to be able to spend that money towards other therapies that may help further his development instead. We are looking in to AIT training http://www.aitinstitute.org/ He would be able to receive the therapy in Hudson, WI - which is about 1 hour away - during the Summer while I have off.
Our neuro doctor from Mayo thinks his seizures could be controled without the use of Vigabatrin and has hopes of Brextin only needing one drug to control his seizures - which would be generic Keppra. (currently taking 1ml twice a day) So we are attempting to wean him off of Vigbatrin in the next 3 weeks. He has been taking 500mg in the morning and 500mg at night. This morning he was given 250 mg and tonight he will be given 500 mg- we will do this for one week and then continue to decrease his amount of the drug.
I was grateful to wean him off of toppamax just a couple of weeks ago - and am glad that he will have less drugs in his system -
Our neuro just communicated to me that he will be out the United States for the whole month of February and his colleagues will be covering for him - which scares me - I often do not like to take anybody else's advice other than our main neuro - so it should lead to an interesting month -
He is scheduled for a 24 hour EEG this coming Friday - to see if his brain waves have improved or worsened since the weaning of two drugs. Since I will be teaching - Andy will be attending this visit.
Good luck! I hope everything goes well!!!ReplyDelete
i just sat here thinking of what to write after reading about Brextin. i just pray that your family finds comfort and i am sorry.ReplyDelete
i googled vigabatrin, and i saw your site. my daughter was diagnosed with tuberous sclerosis complex prenatally. started with tumors on the heart, then the infantile spasms came at 3 months, now brain tumors. she just started vigabatrin yesterday we hope it works along with keppra. i pray everything works out. God bless Brextin and your family.