Thursday, March 10, 2011
A Rough Patch - Beware this is a total RAMBLE
Where to begin. . . Oh yeah, I HATE Rett Syndrome! So we've hit a little bit of a rough patch lately. Mostly involving seizures. So for those that don't know, Juliana had a couple really bad seizures about a month ago. After careful consideration we decided it was time to try a different seizure medicine, since she was already on a high dose of the two she was on and still having seizures. So we began the long process of weaning her off the meds she is on and onto a new one. So things are going along fine for a few weeks and then SLAP! She has another seizure at school. UGHH!!!! No matter how many times it happens, it is always just as scary as the first time for us. We get her home and surprisingly she recovers rather quickly. So the next day, she is up and in a great mood. YES! Daddy gets her meds down and . . . . drum roll please . . . . . she throws up. Yes, you guessed it all her breakfast and all her meds. Now what do you do? How much of her meds were absorbed and how much did she throw up? I don't want to over dose her on meds but I also don't want her to have more seizures because we didn't give her enough. UGH!!!! So we finally get a hold of her neurologist and unfortunately came to the mutual decision that we need to find a new neurologist. Awesome! What a great time to shop around for a new doctor - while you're in the middle of major change - sarcasm! Thank God we've had Dr. Djukic in New York to consult and get us through this difficult time. But we do need someone local. Someone we can run to when things go wrong or we have an emergency. So, how hard can it be to find a new doctor? Apparently VERY. For one, there aren't many pediatric neurologist and number two, nothing is easy. I call around and found a place I think we'll like, but we need to wait until our files get transferred and see if they are willing to take Juliana on as a patient, so we are looking at weeks before we can get in and News Flash . . . I need someone NOW! Because it's Thursday and guess what, she threw up again! And yes, it was all of her dinner and all of her meds. I have so many questions and no one has answers! Like why is she throwing up (once on Tuesday and once on Thursday), is it the meds, is she getting sick??? But either way, why didn't she throw up on Wednesday? And she's also teething (2 year molars), is this a cause for anything? I just want answers and the reassurance to know that we are doing the right thing for our daughter. I'm tired of seeing her sick, and tired and lethargic. I want my happy healthy girl back. Ok, I think I'm done. I keep telling myself - This too shall pass! And Juliana is a tough cookie! She will recover - I just want to know WHEN????????? Okay - Lot's of prayers for a bit of normalcy and oh yeah, a cure would be awesome!