Finally talked to Dr. Malhotra

I just spoke with Dr. Malhotra and I wanted to get it down before I forget it all. We still need to do the urine testing. That test is for MPS and is not associated with the blood work that went off to Childrens Hospital in Philadelphia. The CHOP bloodwork was negative.

I asked about what he thought was going on right now and whether this is just the PVL. He said he has seen kids get MRIs for headaches show the same kind of PVL and have no developmental issues. He also said that yes, Wyatt was still in the spectrum of "normal" for walking so whether there is an issue with that remains to be seen.

The real issue is the hypotonia and reduced reflexes from the last exam. If they were a one time finding and his reflexes and tone seems normal this time then monitoring him for walking and checking in with him over time makes the most sense. If the changes in reflexes are progressive, that's a different story and then he would want to look for other underlying issues. So the PVL wouldn't cause the change in tone or reflexes. It still could be issue with his walking though. He also mentioned that the location of Wyatt's PVL usually involves the legs.

So, I am not sure I know much more than I did before except that in my mind there is a real chance the PVL might not be as damaging as I thought. On the other hand, if Wyatt's reflexes and tone get progressively worse, who knows what that means. Definitely something else besides PVL. I didn't even ask because I figured there was no reason to get myself all worked up before Malhotra's exam.

Next appointment is 1/22.