So it was basically what I expected. The MRI showed that he has enlarged ventricles, but he is acting okay, so we are in a grey area as far as shunting is concerned. The neurologist called last week to let me know that there was no apparent reason for the seizure-like activity, which has pretty much stopped by now. It's still a relief that there is nothing abnormal showing up. However, the doctor did tell me that the film showed "moderate to severe" enlargement of the ventricles, with a rounding shape that is indicative of spina bifida. This isn't too surprising, since he has always had some swelling. They just didn't feel that it was enough to shunt him. The real tell would be if this MRI showed a significant difference from the MRI taken when he was born.
I called CHOP and they basically told me that they treat kids, not x-rays, and that if Oliver seems fine, then there probably is no reason to shunt him. They explained that just because the ventricles are enlarged, there isn't necessarily pressure. And pressure on the brain is what causes a problem. Their reasoning is that if he had pressure on the brain, there would be tell signs such as extreme lethargy or excitability, regression in his abilities, or vomiting. While he isn't doing any of this, I have heard of cases where babies who were shunted without any of these tell signs experienced dramatic improvements after receiving a shunt. Sort of like they were doing okay, but did so much better once they received the shunt. All of this said, I do feel like Oliver is doing really well -- making a lot of progress, really responsive, etc. So I sent the film to CHOP on Saturday for Monday delivery.
I called today to follow up. The first time I spoke to them they said that while the ventricles were enlarged, they saw no reason to change the course of treatment. However, they must not have really looked, because they called back an hour later to say that upon looking at them further, there is some change between the first MRI (taken when he was born) and the most recent. What does this mean? That I should put my radar up. While I appreciate the fact that I should just be more attentive to his signs than usual, I feel like I'm on double secret probation. It's like telling me not just to worry, but to really worry. But not to do anything, either. They did move my appointment up from the end of August to the first week. And on their recommendation, I'm seeing a pediatric opthamologist tomorrow. Pressure on the optic nerve is another sign of swelling, so we'll see what this doctor has to say.
So no huge surprises, but definitely an uncomfortable grey space. I just hope my little man is okay.
