After two rides in two big red trucks with bright flashing lights, meeting the friendly staff of two trauma centers, and a 3 day nap, Ms. CoCo broke out with the classic Roseola rash much to our pediatrician’s relief. (I had refused the spinal tap at the first ER and the resident at the second refused to order another one, he also didn’t believe it was necessary, our Ped went along with him but was a little nervous about it.) They believe that what she had was a complex Febrile seizure.
In all fairness CoCo had been a quirky baby before that day, she had a strange kind of scoot instead of a crawl, and she had that thing where her lips would turn blue.
Then that day.
When we brought her home she was still kind of sick, but she did not seem the same, not just the newly crossed eye, she previously had some language, she would imitate sounds, all of that just stopped. No words and she made very few attempts to vocalize at all for a few months. She was fisting her right hand most of the time, but she would/could use it, she fisted the left a lot, but not nearly as much as the right. There were little things that didn’t seem right.
I trotted her back to the neurologist (the one I had taken her to about the blue lips), she assured me that CoCo just had a febrile seizure and some autonomic issues that weren’t a problem unless her brain forgot to tell her body to breathe, and that she would probably just be one of those kids who just pass out from time to time…No big deal. She did send CoCo for a physical therapy evaluation and to a cardiologist because her heart rate was so high (above 245) in the ER.
The cardiologist looked at her records, gave her an echo, and wasn’t very concerned about her heart rate during/after the seizure.
The physical therapy clinic her set up with Early Intervention through our school district, they took her on for her speech. (Amusingly her speech really wasn’t on my radar; I was more concerned with the wonky legs and the fisting.)
It wasn’t until this past July when she got an appointment with the chief of neurology at Children’s Hospital that anyone thought to order her an MRI, and in October we learned the results, CoCo has Periventricular leukomalacia (Babies with PVL have a higher risk of developing cerebral palsy a group of disorders that prevent the child from controlling their muscles normally, and may have intellectual or learning difficulties). Oddly she had none of the risk factors, she was full term, she weighed over 8 lbs., I had not had any infection that we know of, and I was told PVL typically happens around the 8th month of gestation.
I personally, will never be sure which came first the seizure or the brain damage. And in all honestly, I suppose it doesn’t matter anyway.
She walks, she talks, she is potty trained, she has even gone back and (kind of) learned to crawl at almost 3 years old. When I look back on her birth and that day I know she is a very lucky girl. She may have to work a little harder than some kids in life. She will have issues she will have to deal with. We have no idea yet exactly what those are going to be. But she works hard and we all work hard for her and she is a happy girl.
I am still unsettled by the memory of seeing 248 on the heart monitor. I am way more careful about illness and fevers with her than I ever was with my other two children. Some people go groceries shopping before a big snow storm. I check my supply of Tylenol, Motrin and Diazepam, and the batteries in the thermometer.
