We spent last night in the ER. Yesterday evening I noticed KayTar acting a little strangely, so I kept a close eye on her, and pretty soon the telltale head-cock began. That's how her episodes start, she cocks her head to the left and doesn't move it. Even if she is crawling, her head is almost laying on her left shoulder. Then her eyes closed, then they started flickering. I took her in a dark room to hold her and pretty soon after she threw up on me. These episodes last about 30 minutes. I called the pediatrician and she sent us to the ER for emergency head imaging.
We arrived at ; we didn't get a room until . At 2:30 KayTar finally fell asleep, (she practically passes out once the episodes end, and then gets her energy back after a bit, great fun to have an energetic toddler in the ER for hours on end) and at 3am they did her CT scan. At , we were released.
In the ER we were told she has Dandy-Walker, an unrelated brain abnormality that is essentially a herniation of the brain below where it meets with the spinal column. It does not cause seizures or developmental delays; it was just something they found. It generally isn't problematic; she just won't be able to play contact sports. We were also told that on one side of her brain, the ventricle that drains fluid off the brain is abnormally large, which isn't a problem either, it is just strange.
Today I spoke with the pediatrician and she called the hospital to see if they had a neuro-radiologist in today to re-read the CT scan, and he said that it appears to be normal. Last night she had two obvious abnormalities and today we're told it is normal. That doesn't sit well with me. It bothers the pediatrician, too. She is calling neurology to push to have KayTar's MRI done much sooner if possible. These episodes are progressing and we have no answers. I am also going to ask her to have a third person read the CT scan, just so we know for sure. If someone says normal, and someone says there are problems, I need someone to break that tie for me so I know what to believe.
On a side note, this is the first episode Josh has seen, and it triggered a memory of something similar that happened when KayTar was about 6 months old. We were shopping and she slumped over in the cart, then she acted strangely for a while and kept her head cocked to the side, then after a while she fell asleep suddenly. I had forgotten about it, because at the time, we thought she had hurt herself when she slumped over, but now we think maybe that was the first episode, and she slumped over from the head-cocking at the start of it.
If that was really the first episode, then she had one last August, one in May, then July 27th, August 11th, and yesterday. Lately they've been happening on a two-week basis....it’s quite a jump in frequency.
I really hope that the MRI is moved up and we have something concrete to deal with soon. I don't want anything to be wrong with my sweet girl, but at this point it’s clear that all is not as it should be. She has lost two separate sets of words, the seizures are increasing, and she isn't developing at a normal rate. I just need answers. I want the MRI to show us the problem. I want to be able to help her, but right now it feels like my hands are tied. All I can do is wait. It is such a helpless feeling.
On a different subject altogether, Bubba made it through the night at his grandparent's house without calling us to come home! Since we were at the hospital, we couldn't have picked him up in any case. He didn't even ask to call us this time! We've tried this sleepover thing many times and it always ends in up picking him up. Our boy is growing up!