Liam had his follow up with the developmental pediatrician today. Overall, it was a great appointment (all things considered). Not only did I get more information from her when she looked at his MRI than I did with the neurologist, but she is running a few more tests to check out some things.
If you all remember back in October, I posted about our final visit with the neurologist. Originally, at our very first visit, the neuro told me that Liam's cerebellum was small. When I pushed her for more information and asked how small, she just said that it was small.
Today, the DP looked over the MRI frame by frame with me and showed me everything that was going on. A few things I already knew, like Liam having a thin corpus callosum, but there was so much that I didn't know and it was quite shocking that the neuro left out so much information.
Now, the DP will tell you she is not an expert, but she seemed to know what she was doing for sure. She said that not only is Liam's cerebellum extremely small, it has scar tissue around it. And the scar tissue reaches into his brain stem. The brain stem controls breathing, heart rate, temperature (basic vital functions), etc... and Liam does just perfect with all of that. So, the scar tissue around his brain stem doesn't seem to be a problem. But his pituitary is right there with the scar tissue and that effects the thyroid. His basil ganglia (which everyone asks about because it can cause a lot of problems if there is damage there) looks great! He does have the pons which I was concerned about because it is right at the cerebellum and since that was missing, I was afraid the pons would be screwed up too. But it looked great too. The big concern she could see was the scar tissue. She said to her, it looked like Liam had had a stroke at some point.
He does have larger than normal ventricles but that isn't concerning either.
And the other big thing?
She couldn't find any evidence of PVL (Periventricular Leukomalacia).
Remember when I said that Liam had it (diagnosed in the NICU on week 3), then he didn't (according to the follow up ultrasound when we left the NICU), then we were told he did have it (at our first neuro appoint) but that it was insignificant? Well, she looked it over several times and couldn't find any evidence of PVL.
Now, I'm not saying he doesn't have it, but it must be small if she can't even see it.
So, what does all of this new information mean?
Well, it's nice to know exactly what the extent of Liam's brain damage is. I've been in the dark for so long and it's good to finally know some results. It was great to be able to look over the MRI with a Dr and have them explain everything to me.
Because Liam looks like he has scar tissue, and because that is a signifier of a stroke, she wants to run some blood tests to check Liam's coagulation. Strokes do run in my family so she is just checking things out for him. And she is also running tests to check his thyroid and make sure it is functioning the way it should be since there is scar tissue around the pituitary gland.
We should have the results of those tests in a weeks time.
So, even though I got news that Liam may have had a stroke and that his cerebellum and brain stem are scarred, he has large ventricles and a thin corpus callosum, it's good news to me. To finally know a little more of what's happened to our little guy is a relief. It doesn't change anything we do for him, but it does change our knowledge of what he has gone through.
