Friday, October 2, 2009


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.


Stacie said...

Wow, that is really scary. I hope that you're able to get Sky in to see his doctors (neuro, NP) very quickly. That doesn't sound like something they would make you wait on.

I'm sorry that you, Sky and C have to go through this.

Please keep us updated once you know more.

Becky said...

I'm sorry that you have to go through this too. I hope that they'll be able to determine it quickly.

I want to add, though, that what your describing is something that I've seen and heard of other kids his age doing while learning how their body's work.

I know it's easy to jump to something scary, but it's not always scary. Yeah, I know...I should take my own advice : )

(((hugs))) Keep us posted on how he is doing. We thought Lily was having seizures with the Nystagmus and that was scary enough. You guys have been through the wringer.

Ya Chun said...

Oh no! More doctors, but hopefully they cang et this managed.

Don't worry about those future classmates. That is all small potatoes.

Ashley's Mom said...

The head shaking you describe is eerily similar to what Ashley does when having a seizure. You are wise to get it checked out.

But, even if it is, you know you are strong enough to do whatever will be best for your child.

Seizures can be managed - and are not always an indicator of brain damage. Heck, my old boss (now retired) had epilepsy with daily seizures and he was the manager of a team of computer professionals.

Seizures can be very scary (as you know from reading my post today), but you have the strength and wisdom to slay that scariness!

Karen said...

((((hugs)))) I'm so sorry. I hope it's not seizures.

Corrie Howe said...

I hope that you are feeling better, physically, emotionally and mentally.