Hi everyone! We have had an awful few days here so I've not had the time or energy to update you all. They called last Wednesday and she is having Petit Mal seizures, or Absence seizures. No convulsions, but she will just sort of stop mid sentence or mid movement and then carry on as if nothing had happened. The worry part of them is she has some where she loses time before or during the seizure and now that we know what is going on, these are some of the symptoms that started us getting more concerned about 3 months ago.
She'll be in the middle of doing something and then pause, just for a split second and then she doesn't know where she is or what was going on. Everything I've read says the memory loss should only be a moment, like maybe a minute, two minutes tops, but she's having periods where she's losing 5, maybe as long as 10 minutes. Whole conversations or periods where all of a sudden she is not sure where she is or what she's supposed to be doing.
We went to both her neurosurgeon and eye specialist on Friday and left the first pretty down. He can't say still if it's a cyst or a tumor, doesn't want to move up her MRI from next spring, can't say if this could be causing the seizure activity or memory loss, pretty much threw his hands up and said we need to get her into a ped neurologist. The eye specialist is wonderful and he was more concerned than the surgeon that this might be a sign of something more serious. He took copies of everything and was going to look things over for us.
One good thing, she's outgrown her glasses and doesn't have to wear them anymore!
We have been working ourselves crazy for the last 3 days trying to get an appointment, they kept saying it could be 6 months. We just can't wait that long. Her pediatrician has started depakote for the seizures, but that's based on phone calls with this new neurologist. We're not super comfortable with this lady Rxing her meds without having seen her or her test results yet, but are kinda stuck. Her pediatrician, her surgeon, her eye specialist and another friend we have all know this doc we're trying to get into and they all begged favors and we're taking her tomorrow!
Our other options were either St. Louis or Chicago, both quite a way from home. We don't know if they'll end up keeping us at the hospital we're going to tomorrow to re-do all the tests she's had done so far or if it will be just a preliminary appointment. We know there's a chance they could decide to admit and observe and do the tests over a few days, but we're going to cross that bridge when we get to it.
For today, I'm nervous and happy that we can be seen tomorrow, but also terrified that the news is going to be worse than where we are now. I'll try to update again as soon as I can.
Again, I can't say enough, how much everyone's thoughts mean. We can feel them!
