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Medication Free VEEG

Wed, 01/23/2008 - 21:40
My daughter Kaitlyn (age 2 1/2) is currently in the hospital having a VEEG. We are on day four here... and they want us to stay until she has a seizure. Normally she has a few here and there and hasn't gained any control from medications. The doctor said that her "background" looks good and that she just wants to catch one seizure before we start medication again but it seems like once we stopped her medicines she has been so much better. Do we stay more days to try and catch a seizure? (We are 8 hours from home, so it's not a short trip but we are running out of paid time off from work). Is it possible that we medications were making the seizures worse? What happens if we don't medicate? How do you decide if the seizures are worse or the side effects and risks from the medications? How do you decide that enough is enough and stop putting your child through so much? Isn't there a point when you have to figure out what you are willing to do to your child or do for you child? She was diagnosed with Severe Progressive Myoclonic Epilepsy... but she's not having any activity now? Is that normal? Does that mean her diagnosis will change? Does this change how they are going to treat her? We only have one more medication for her to try, Felbatol... and the VNS.... then we are at the end of road with no where to turn. What about other tests? What do I demand to get more answers? What do I ask for to figure out more? Or do I just sit back and wait for the disease to progress and my little girl to slip away? HELP PLEASE Just need some advice.

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