Coping with Autism

We heard from the neurosurgeon's office on Monday. Peter has cranial synostosis and we will need to attend the cranial-facial clinic in February. The CT scan results have been sent to one of the cranial-facial surgeons at MCV for his review and staff at MCV will be working on a list of proposed surgery dates. At this point, unless Peter starts exhibiting some of the more severe symptoms of synostosis (seizures and so forth from intra-cranial pressure) he will have the surgery sometime in February or March (he turns five in March-- what a way to spend a birthday.) I'm okay, I just think it stinks and I hate the idea of putting him through all of this but he has to have the surgery. Otherwise, the condition eventually becomes life threatening. I'll keep posting as things progress.

This is the top of Peter's skull from the CT Scan. As you can see there is no suture down the middle of his skull. The suture you see running from left to right is the coronal suture that runs from right in front of one ear to the other. The sagittal should run from the middle of that suture to the back of the skull but it's not present. If it were, it would have the same zig-zagged appearance as the coronal suture. This is a side/rear view of Peter's skull. As you can see, about where the ear is there should be a suture but, again, there isn't one.

Well, I've seen the CT scan. The doctor has received the radiologist's report by now but he has not seen the scans (he picks them up tomorrow when he comes to Fredericksburg). Peter has absolutely no sagittal suture. His skull looks like a shiny, smooth, round cue ball. He has the coronal suture and the lambdoid (the one on the lower back of the skull) but that's it. I can find little evidence of the temporal sutures as well. On one side, you can kind of see where it was but the other side looks as if the suture was never there. Peter also, very, very clearly, has trigonenephaly. You can't quite tell looking at him but his forehead is small and triangular shaped and his skull is strangely out of proportion with his face. Looking at him with his skin covering the skull, you can't tell this but the scans tell a completely different story. The question for us now is whether the neurosurgeon will want an ICP test done and, if so, when. We expect that we will be meeting

Peter saw the neurosurgeon at the Medical College of Virginia on Tuesday (December 4). He confirmed that Peter has synostosis (or stenosis, depending on what source you consult). Synostosis is a medical term that means 'fused.' Some of the bone plates in Peter's skull have fused early. This can cause problems with his brain growing. The sutures or gaps between the plates are connected with fibrous tissue that is supposed to fill in over time but in children it's supposed to remain flexible so that the skull can grow as the brain grows. Peter has had synostosis of the metopic suture (the one that runs down the middle of the forehead) for quite some time. The doctor said this suture normally closes around 1 year of age or so and the fact the Peter has trigonencephaly (pyramid shaped forehead and probably forebrain) indicates that this sealed much earlier (this may have been why I had a devil of a time delivering him if his skull was partly fused). The bigger concern at th