Well poo...

SaucySarie

Ayva had a follow up EEG yesterday and it is still not good.  SO after trying all sorts of meds ( the previous one making her not want to eat- and lost some weight- and making her not want to sleep) we are going to put her on a medicine that is not approved in the U.S.  It's kind of expensive and we have to pay for it OOP.  I don't know where we will get all that money- since I don't work- but we have to find a way for her to stop seizing!!! 

POOP! It really sucks too b/c the US is the ONLY country that this medicine is not approved in.  We will be getting it FedEx'd from Canada.

Hopefully it works and is worth the extra money (maybe I will get a job on the weekends or something!)

CROSS YOUR FINGERS!!

Kristin78

I hope it works!!  Good luck!

pumpkinbug

I hope this med works for her as well. It totally stinks that you have to pay oop for the meds and I hope it does the trick.

On another note can you guys have a garage sale to make the money, or talk to a local resturant about donating a percentage of their profits from a night...this would mean you would have to open up your lives and share the stories of the babies, but it may help. Talk to the local Moose Lodge, they usually help too.

We had Cash on Provigil which is not FDA approved for children under 16, which is used for narcalipsy. So I know how nerve racking it can be to try something new and not approved...Good Luck

Beantown11

Good luck with everything. Has ACTH been presented as a medication option? It's available here and most insurance will cover it.

AB&TB

Are you getting Sabril?  That is what my DS is on, and it completely controlled his IS.  He was still having a focal seizure at his f/u EEG so he was put on keppra as well.  I hope that this new med works for you guys!