MADDIE UPDATE

I wanted to let you know that we took Maddie to the Dallas Children's Medical Center and had a consultation with a Pediatric Neurologist there. His diagnosis was bizarre...he said that she has Hair Grooming Syncope Seizures (Google it or check it out here: http://pediatrics.aappublications.org/cgi/content/abstract/91/4/836). It is seriously caused, or happens, when she is getting her hair fixed. I think there are a number of contributing factors-she has just gotten up, she hasn't eaten, and she is standing for a few minutes. The blood rushes from her head and causes her to seizure. Barry and I both couldn't believe it and really thought it was a joke. I had said I wasn't fixing her hair any more and we got it cut shorter so that it would be easier to fix. Also, it made me feel like I was pulling on her hair really hard (I promise I don't!). He handed us a print out from some medical journal detailing this finding.

Anyway, in all seriousness (If you can be serious about a hair grooming induced seizure), we are glad that it's not epileptic related and that it can be somewhat controlled with no medication. He suggested we get an EKG done just to check her heart and make sure that is fine-it is the one test that we haven't done. We also will be taking her to Ft. Worth's Cook Children's Hospital to see a Pediatric Neurologist there for a second opinion. It's just to be safe and make sure there is a consensus. I mean we still question-Why did it just start? I've been pulling her hair the same way since she was born really, so why now? Why only sometimes and so random? Why is the study so old and seemingly so limited? So, maybe if we get a second opinion, we will feel a little more confidence in this diagnosis.

She has been her great self so far. Of course, it was 2 months between episodes before, so I guess we are all holding our breath. I don't fix her hair any more really-if I do, she is sitting down and I am constantly asking her if she is okay. So, hey, if that's all it takes, then great!

Thanks to everyone for remembering her in your hearts and prayers. We appreciate all your love and support.