Thanks for the replies. I really would love to do anything possible to help her, as any parent would. The only problem with traveling the 60 miles, is I can't drive. So my options are whatever is close enough by bus or taxi. Her Dr. suggested a study in Madison (WI), which is great. I guess they provide transportaion down there, but I don't know if that is for the patient and a parent only or what the details are yet.
What took me by surprise is all the changing of meds that has to happen in order to get the right ones and the right dosage. I am not complaining, but to pay 40 bucks for a drug, have her take it for a week and then spend another 40 because that didn't work so well gets old. I just thought that this would be easier for some reason.
Hi dragonfly- welcome to the forum. so sorry you and your little girl have to go thru so much frustration and have to deal with so much. The transportation thing is a big issue. Have you approached her neuro about maybe getting a consultation from a pediatric neuro and then the neuro can keep in touch by phone for fine tuning the meds so you don't have to go back and forth the 60 miles?
It's a difficult situation. You definitely need all the support you can get. Make sure you feel comfortable talking to her neuro- that's half the battle. Good communication is a must. Good Luck. Come back anytime. Glenda