Many of you know, Retta has started to display some odd behavior (facial/ neck gestures) over the last week that have grown to be of great concern. I noticed a very subtle motion last Wednesday that was nothing more than Retta slightly throwing back her head. Szymon thought she was mimicking his laugh...but over the next few days we realized that this was not a voluntary motion. It was during Jaja's birthday dinner that we realized something was not quite right.
Retta had her first appointment to see the Dentist Monday morning and I was hoping she would do the little movement in the dentist's presence so I could get her opinion about it. (Retta's dentist, Dr. Cerna also has a daughter with DS!) ...And she did. I was really hoping Dr. Cerna would say, "Oh, that's nothing, my daughter does the same thing." ...But, Dr. Cerna suggested we call our Pedi to have it checked out.
"Hi Dr. Cerna!"
"All I want for Christmas is my two front teeth!"
So, after several phone conversations with Dr. Tardy's nurse, we got an appointment with the recommended pediatric neurologist for early December. But the more we read about the symptoms Retta's displaying - the more we wanted to be seen ASAP!!!! So later that afternoon I made a u-turn in route to PT and drove to to see Dr. Tardy. Szymon met me at the doctors office and while sitting in the waiting room I luckily was able to capture an episode (the worst one yet!) with my cell phone. After showing the video to Dr. Tardy and ...of course Retta showing Dr. Tardy the movement herself. Dr. Tardy suggested we have an EEG to rule out Epilepsy and Tardive Dyskinesia.
So Retta and I made our way back to Methodist Hospital this morning for the EEG. (Picture above). (I hate driving into that parking garage...brings back LOTS of unpleasant memories - but I guess, I better just get use to it. I'm sure we'll be making MANY more trips there in the years to come). They let me lay down in the bed next to Retta during the procedure. And after 35 minutes of fighting tears, flying arms and legs...Retta finally decided to give up and fall asleep. We are hoping this enabled a good 20+ minute read of Retta's brainwaves. We are very worried. Just when we thought we were in the clear...and Retta seems to be doing great....
Dr. Tomasavic (the neurologist) is appointed to read the EEG. I plan to call first thing in the morning to see if & when this will be done. Everything we read on the Internet re: infantile spasms is VERY, VERY SCARY.
Please keep Retta in your prayers.
Praying for you all. Please keep us posted.
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