Our Mystery

Since the day Camille was born, she has been a little mystery. Her neonatologist called her a "puzzle". Her pediatrician has said he has "never seen anyone else like her". She has befuddled the entire Cooks genetics team, and after yesterday, we can even say she has done the same to Cooks neurology and cardiology.

Yes, it's true again. All tests came back normal. She had her EEG first, to check for seizures and abnormal brain activity. Let me just add in there that her EEG was scheduled for 8:30 a.m. in Fort Worth. Have you ever tried to get a 2-year-old, a 6-month-old, and a naughty dog ready to leave at 6:30 a.m. for an hour and a half drive to a rigidly set appointment? Oh, and let me say too that Camille was supposed to be sleep-deprived. Have you ever tried to keep a 6-month-old awake on a long car ride? It was definitely fun times! Especially when I-35 was backed up all the way from I-20 to Burleson.

All that to say, we made it for the EEG, slightly late, but she was still able to have it done. And the results thoroughly baffled our neurologist. His exact words when he gave us the results were: "It was remarkably normal." He said that he even went and had a colleague (who is supposedly the best at reading EEGs) look at it to make sure, and he agreed that it was completely normal. What does that mean exactly? Well, it means that it appears that she is not having seizures. It doesn't mean that she has never had a seizure or never will, but currently, it appears that she is not. It also means (and here was the really baffling part for our neurologist) that her brain activity was normal, organized and developmentally appropriate. He said that a lot of times, children with a genetic condition, or a suspected genetic condition as in Camille's case, will have a very disorganized brain activity pattern on their EEG. Camille's, however, was "remarkably normal". Remarkable--that certainly is our little Camille!

The neurologist went on to say that he also completely agreed that Camille had something genetic, and he was very pleased that we would be seeing a geneticist at Texas Children's in Houston in February. He said that he really felt like we would eventually find out what Camille has, and then all of this would make sense.

And there it is again. I am thrilled that Camille is not having seizures and that her brain activity is normal, but that also means that we get another big, fat, highly annoying "I don't know". I am getting really tired of those. If we were getting all of these normal results, along with a "See, there's nothing wrong--she's completely fine!", then I would not be so concerned. I would be just plain thrilled, not thrilled with the nagging irritation and worry that I am feeling now. But instead, what we're getting from every doctor we have seen so far is: "Well, the latest test results came back normal, but we don't know how in the world that is. There is something wrong--we just haven't found it yet."

It was the same song, second verse at the cardiologist. Camille had another heart echo done, and the structure of her heart is normal. She is wearing a halter monitor now for 24 hours just to check again to make sure that her heart rate is still in the normal range, but the cardiologist feels like it will be. No one can explain the heart rate drops or the blueness she has around her mouth, hands and feet at times. Perfect strangers come up to me and remark at how concerning it is that my daughter's extremities are purple, but we have now seen 3 different cardiologists at Cooks who can't explain that.

So, here we are again, stuck in the same annoying place, trying to focus on the good parts like that my little girl's brain and heart still appear healthy, and trying not to focus on the fact that we still really don't know anything more. It does appear that Camille will be able to be seen by the pediatric endocrinologist by the end of the year, which is very good. Now everyone agrees that endocrinology might have some answers. I'm hopeful, but I'm also trying not to get my hopes up too much.

After all, we've got a little mystery. And it appears that she doesn't want to be figured out just yet.