As I strolled into the school, the ground duty woman ran up to me and started telling me, as we walked down the hall, that she had been talking to Xanthe at recess and Xanthe hadn't answered her questions. She thought Xanthe was teasing her. As we spoke, her walkie-talkie blurted out in urgent static, "How close is the mom?" I started getting concerned. Outside Xanthe's classroom, her classmates were sitting on the ground, reading. I said, "Hey guys! What are you doing out here?!" Man, I'm slow. The kids shushed me, their fingers to their lips, and whispered, "Xanthe doesn't feel good!"
When I walked into the classroom, the principal, teacher and school nurse were all kneeling around Xanthe, who was lying on the ground. She couldn't talk. She couldn't move. Tears were trickling out of the corners of her glazed eyes. I am so calm in emergencies, someone could have an arm dangling off and I'd be looking for a band-aid. At a neighbor's house, because we never have any. My brain goes into overdrive, not to panic, but to mitigate the situation, maybe so it doesn't overwhelm me. So at this point, I was thinking, "I'll just take her home and she can rest." Since she couldn't move, the teacher and I lifted her into the wheelchair they had waiting. She slumped in the chair and without support, her head lolled back listlessly. That was when I got really worried. I said, "We need to call 911." The principal made the call from the school, so the paramedics would automatically have the address and it would be faster. Within minutes, the students in the hallway were ushered out to the playground. A fire truck, ambulance and two sheriff cars pulled up. And suddenly, my dad was there. I don't know how he got there so quickly. I had sent a Whatsapp to the King family as soon as I saw Xanthe, because I knew I wouldn't be home, and the little girls were alone. I said, in all caps, "XANTHE IS HAVING A SEIZURE OR SOMETHING! THE GIRLS ARE HOME ALONE! I'M AT THE SCHOOL! I NEED HELP!!" I failed to mention that Xanthe was also at the school, so my mom ran over to my house to heroically save Xanthe's life, couldn't find her, and was freaking out! Ruby was at school, crying, and I didn't have time to send any more info. Trajan and Micaela had jumped in their car and Mic was texting instructions for handling seizures (she is a life guard and had all the training), as they sped towards us on the freeway. It was chaos everywhere but at the center of the action. As the paramedics treated Xanthe, she started coming out of it. Her pulse went back up and she was able to answer their questions. The only one she didn't know was who the president is. She thought it was Barack Obama, but then she remembered there are some other people who might be president soon. Lol. Good girl, paying attention to politics!
The paramedics offered to take Xanthe by ambulance to the hospital, but we didn't see any reason for that. Scott had left court in Sunset immediately after the Whatsapp SOS, and had arrived by then. He followed me to PCMC and Xanthe was admitted. Hours later, (you know how urgent the ER is. Ha ha), the doc had diagnosed the episode as a possible seizure or complex migraine. I was so irritated by the migraine diagnosis. It clearly wasn't a migraine. The doc asked Xanthe all the questions; was your arm numb, did you see spots, were you nauseous, etc., and she said no to all of them. Yet the doc still wrote that down. Kids don't just fall down, unable to speak or move, when they have a migraine. Why would she diagnose that, along with the diagnosis that seemed far more likely, the seizure? Did she even listen to Xanthe's answers? Plus, she looked in Xanthe's eyes with a light and didn't even comment that one eye doesn't reflect the light because of the retinopathy. Anyway, Scott went home and Xanthe and I waited for the results of an EKG. We were looking forward to eating at Hires, which we did. That Big H was the most delicious thing ever. Xanthe was insanely happy, like her system was flooded with endorphins. She was coming up with funny one-liners like, "If they didn't invent restaurants, I'd just have to put up with whatever you make for dinner." It was one of the most fun times we've ever had, because Xanthe wasn't all worried about everything like she usually is. It was very out of character, but I loved it. We both did.
Since this episode, we have identified at least 3 other times when this happened, when we thought it was low blood sugar, or we'd just forgotten. Xanthe said it happened in the shower once, and she got out and rested. Then she "passed out" at play practice last spring. A couple of years ago, Xanthe couldn't get up playing at Esmae's outside. Josh had to carry her inside, and she wouldn't talk. But then she perked up. Emily had told me about it, but we just thought it was weird. Now that it's part of a larger picture, it makes more sense. Furthermore, Xanthe does seem to zone out for minutes. We've always thought it was part of the auditory processing disorder, like being on pause while her brain processes information. Now I don't know. Are those moments mini seizures? Is that even a thing?
Xanthe is scheduled for an EEG and maybe an MRI, depending on what the neurology docs decide. It would be great to have answers for this. Xanthe is all stressed now, more than usual, and her baseline stress level is extremely high. She came home from school today because her head hurt, and she said it might have been from worrying. Great. Now she's worried about worrying. Has anyone had experience with these types of unresponsive seizures, or maybe something else that sounds like this? We know it's not low blood sugar because the school didn't give her anything to eat or drink afterwards, and she still came out of it. Plus, she had just had lunch. So that's helpful in ruling that out. I just hope we get more pieces in the Xanthe puzzle put together. She came to us as a "riddle wrapped in a mystery inside an enigma," and in many ways, she still is. When she came home from her Hunan orphanage at 13 months, we thought she would be "all caught up" within a matter of months. Oh, how my heart aches ten years later, as we realize layer by layer that life doesn't really work that way.
6 comments:
We can relate to all of this. When I have a little time I will write to you about Carissa's apparent acute nerve damage that had Doctor's convincing us that she has Muscular Dystrophy. We were freaking out. I think many of the symptoms that Carissa exhibits are anxiety, remorse, guilt, and feelings of abandonment revealing themselves through physical manifestations. It is difficult. Our thoughts are with you.
We thought the catching up scenario as well. I just read that adoption is a form of trauma. I think that when Carissa has had unexplained ailments like this, they are manifestations of anxiety, remorse, guilt, and abandonment. We hope that all turns out well for Xanthe!
I work with a lot of kids that have varying seizure/neurology disorders. Sounds like it's in that family to me. Really hard and lots of symptoms. Report everything. Hugs.
Sending prayers and good wishes to Xanthe and your family -- Hope you can get to the bottom of this!
No answers but will pray answers will be found for Xanthe.
Lots of (((hugs))) and prayers for Mommy too! xoxo
That's pretty scary! It does sound like it's seizure/neurology related and with the history you're piecing together, and her age, things might be escalating.
Without sounding like I'm over-reacting, I'd suggest you be rather aggressive in finding out what's going on. EEG for sure, MRI for sure, and genetic screening for sure. She also shouldn't be left alone until you have some answers. Falling and hitting her head is something definitely to be avoided, though she's bright enough to train herself to sit down the minute she feels odd.
My prayers are with you.
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