Periventricular Leukomalacia

I have gone to grief support at Kaiser twice now and have decided it isn't really working out. I found a psychologist who was recommended through Berkeley Parents Network. I saw her today for the first time. I really like her. She specializes in helping people with fertility issues. She has actually seen Dr. Chetkowski herself (She even knows who Zouves is and I suspect she has seen him.) She really likes Chetkowski.

We were talking about my fear of Dr. Malhotra and how I don't know if I should go to the appointment on May 11th. She asked if I had considered getting a second opinion. I admitted I had, and mentioned Children's hopsital in Oakland. She told me NOT to go there. She had a miserable experience with them. Thier MRI department is a mess. I wonder how many children she has and what is wrong. I feel like we have a lot in common and she is very empathetic.

I left and came home to catch the last ten minutes of Wyatt's PT appointment. Wyatt had been pretty cranky that morning before I left. He was pretty cranky yesterday too. Lisa thinks he is probably teething again. I don't think he ever stops teething! He woke up at 11pm last night and was up for a bit. I ignored him and we both eventually just went back to sleep. He ended up getting up at 7:15. That's pretty late for him. I got up at 6:45.

Anyway, after Lisa leaves I feed Wyatt and put him down for a nap. The phone rings and I go to answer it thinking it is my mom. Turns out it is Dr. Malhotra calling to discuss the MRI results. As soon as I heard "This is Dr. Malhotra." my first instinct was to say that I needed to get my husband. Instead I decided to talk to him.

He told me the first thing he looks for on an MRI is if the structure of the brain is normal, and it is. The second thing he looks for is the maturation of the brain. Wyatt's is pretty much on target, maybe two weeks behind. Both those things are good.

So then he gets to the "less dense spot." He says Wyatt has Periventricular Leukomalacia (PVL). I knew I had read something about it, but couldn't remember what. Basically, it is an injury to the area of the brain around the ventricles in the white matter. This type of injury can typically cause motor issues. It is relatively rare that there is any kind of cognitive impairement with PVL. Since Wyatt's injury is on the right side, it would likely impact movement on his left side.

I asked what causes it and he told me typically a brain bleed, although they aren't sure of all the ways it happens. I asked why this hadn't been discovered in NICU and he said it was likely a brain bleed that was so small it wasn't seen on the ultrasounds. The area of damage is small, but since Wyatt has high tone, it is probably significant.

I asked about cerebral palsy and he said that you could say given they have seen injury to the brain and motor impairment in his tone that he would fit the definition, but he also said it was too soon to say because Wyatt's tone hasn't stabilized. It continues to get better each time he sees him.

He said some children with PVL have no long term effects. I asked if in those cases those kids displayed tone issues early on and he said no. He also said that even with tone issues children are generally not stopped from doing what they want to do.

I guess he called because he thought we would be curious and worried about the results. He didn't want us to have to wait until May 11th. I could have gladly waited. In fact, I was seriously contemplating not going at all. In some respects, I think we should have just not discussed the whole thing until he is a year.

We don't need to bother with the May11th appointment now. Dr. Malhotra said we could wait until July or August when Wyatt is one. Rus doesn't think that I should go to that appointment. We will see.

After telling Rus what Malhotra said, Wyatt and I went for a pleasant walk. I tried to put him down for a nap, but he wouldn't go to sleep. I think he is going to two naps now. He did get in to a big giggle fit when I shook my head and went "Dun, Dun, Dun!" Rus got it on tape.

My mom did call later and I told her about Malhotra. She is tired of Wyatt being scrutinized and labeled. Grandparents are great for defending their grandchildren. It is nice that both sets of grandparents will be coming for a visit soon.

I am going to see if I can edit down the video of Wyatt laughing and post it. He laughed so hard. I had no idea I was that funny.