A Stroke of Luck

Infantile spasms are divided into two categories: cryptogenic IS, which means there is no identifiable cause of the seizures on MRI or metabolically, and symptomatic IS, which means there is a known underlying cause, like a tumor, or a metabolic or genetic disease. We had been hoping for cryptogenic IS, because the overall prognosis is better.

Lively had an MRI yesterday, and we found a cause, so he has symptomatic IS. At some point during his short life, he has had a stroke. We don't know when it happened -- it could have been before he was born, or during delivery, or 2 or 3 months ago. Based on the MRI findings, it didn't happen recently. As a consequence, there has been damage to the right side of his brain, most concentrated in the parieto-temporal area. He also has some diffuse atrophy on the right side of his brain. Here are some of the pictures:

On MRI, the left and right are switched, so the right side of his brain is shown on the left. When you compare the two sides, you can see some obvious differences caused by the stroke.

Believe it or not, "Your baby has had a stroke" was the best news we'd heard all day. The fact that this happened quite awhile ago, and Lively has continued to develop normally, is good news. We don't think the damage to the brain will get worse. Despite the significant damage, Lively moves both arms and legs, laughs, smiles, coos, babbles. He doesn't sit yet, and he has some muscle weakness in his neck that we've known about for awhile, which we now realize may have been caused by the stroke. He does have some incontinence, but the doctor feels that is age-appropriate. :)

So we don't know exactly what this means. He might have some permanent motor deficits, which would mean that he has cerebral palsy. He may have some developmental disorders, learning disabilities, ongoing seizures, we just don't know.

This morning Lively is still having seizures, so the medicine he's getting hasn't worked yet. The seizures are getting bigger, and Lively is more upset when they happen. However, we are hopeful this medication will work for him, and that he won't have to be on it very long (lots of scary side effects, I'll get to that later).

We have some more tests today (an echocardiogram, a hematology consult and some blood work), and if everything goes OK, we might get to go home tonight.

This is Lively, insisting that he suck his thumb despite his unfortunate IV placement.