There's always something isn't there? You think you're okay, and then something pops up. I'm sick, I have this stupid cold and I feel like hell because of it, but really I can deal. That's not that bad. Then Chuck says to me this morning that he thinks our son may be having seizures. It's not out of the realm of possibility. If his ACTH levels are low that's what happens. But he's been on stress pred for a long time, so it isn't like he's been low on his cortisol replacement therapy. Of course we're not certain that what we're seeing is an infantile spasm (baby form of seizure). For the past month he's been randomly shaking his head like he is saying "no" which we thought was cute. And he does it when he doesn't want his soother, like if he's lying down on his back and you put the soother in his mouth and he's crying and upset and doesn't want his soother he will shake his head (in the same way we shake our heads no) to get the soother out.
But he also does this head shaking thing randomly, like while he is drinking milk and while he is just sitting there. I know head shaking is also a sign of an ear infection in babies, but he doesn't have any of the other symptoms and last time we had the ped check his ears they were fine (and he had been doing the head shaking thing before). So now I'm concerned. We're setting up another appointment with the NP, and the neurologist to check it out. Seizures are a known symptom of Septo Optic Dysplasia, but I had really hoped we wouldn't have to deal with them.
I'm feeling somewhat overwhelmed, if it is seizures what am I going to do?? I mean yes I know logically what I will do. I will research every possible thing I need to know about them, choose the best treatment option out of what's presented to us by his team of specialists (the treatment is actually prednisone, so I'm guessing they will up the dosage) and monitor the situation blah blah blah etc. But I am wondering when will he get a break? When will we get a break? We had gotten so used to all his current issues and taking care of everything and being comfortable with it. I'm just not ready to add seizures to that list. Plus seizures generally mean a lower intellectual capacity. Not that I am saying I will love him any less if he is mentally/developmentally disabled. I will always love him just the same, he is perfect, he is my baby, but what about when he goes to school? What about when kids start calling him a "retard"?? I don't want that for my baby. I don't want that for anyone's baby. I wish people would stop using that word.
All I can do is hope it's just him being him and not a sign of a bigger problem, and know that even if it is, we'll deal.
This just sucks.