Cranial-synostosis (or Cranial-stenosis)
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 this time is that it seems the sagittal suture (the one that runs down the middle-top of the skull connecting the parietal plates on either side) is likely fused now as well. We go for a 3D CT scan this Monday, (December 10th) to get more information. The neurosurgeon will look over the scans and depending on how bad he thinks it is, he may order a ICP test. This test looks for intracranial pressure (ICP) that may be affecting the brain. In essence, the neurosurgeon would drill a hole in Peter's skull, place a probe in and monitor the pressure inside for 3 days. Peter, of course, would be hospitalized this whole time.
If the neurosurgeon feels that surgery is needed (which is looking likely), we would meet with a panel of doctors in February who would sit down with us and go over the case and make recommendations. The panel would include the neurosurgeon (or two), a pediatric neurologist, speech therapist, a cranio-facial specialist, plastic surgeon, etc.
The neurosurgeon said that at this point fixing the metopic suture would be more cosmetic that anything else (basically 'what's done is done') but I wonder if it isn't the cause for Peter having a more severe case of autism. (Nathan doesn't have any of this). The forebrain is affected by the trigonencephaly and it's where a lot of higher reasoning takes place. Also, in synostosis cases there can also be mild hydrocephaly so this is a concern as well.
We will know more Monday and then after that, we will try to enjoy our holiday as much as possible while worrying about serious and life-altering surgery for our son.
Argh!
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 this time is that it seems the sagittal suture (the one that runs down the middle-top of the skull connecting the parietal plates on either side) is likely fused now as well. We go for a 3D CT scan this Monday, (December 10th) to get more information. The neurosurgeon will look over the scans and depending on how bad he thinks it is, he may order a ICP test. This test looks for intracranial pressure (ICP) that may be affecting the brain. In essence, the neurosurgeon would drill a hole in Peter's skull, place a probe in and monitor the pressure inside for 3 days. Peter, of course, would be hospitalized this whole time.
If the neurosurgeon feels that surgery is needed (which is looking likely), we would meet with a panel of doctors in February who would sit down with us and go over the case and make recommendations. The panel would include the neurosurgeon (or two), a pediatric neurologist, speech therapist, a cranio-facial specialist, plastic surgeon, etc.
The neurosurgeon said that at this point fixing the metopic suture would be more cosmetic that anything else (basically 'what's done is done') but I wonder if it isn't the cause for Peter having a more severe case of autism. (Nathan doesn't have any of this). The forebrain is affected by the trigonencephaly and it's where a lot of higher reasoning takes place. Also, in synostosis cases there can also be mild hydrocephaly so this is a concern as well.
We will know more Monday and then after that, we will try to enjoy our holiday as much as possible while worrying about serious and life-altering surgery for our son.
Argh!
Comments
I have three boys with autism. The youngest (age 5) and the most severe, was born without a soft spot. (Sagittal Suture Stenostosis) He had surgery to repair it, but his head is still crooked. About a mile away from us there lives a 14 year old boy who was born with the same condition and he too, has autism. I wonder if there is a correlation?
I ejoyed reading your blog.
Good luck with your new job!
Steph
www.spectrumspectacle.blogspot.com
At three weeks old he had surgery to correct it and we were told everything was good.
However, when he started to fail to progress, he too was eventually diagnosed with autism (PDDNOS) at age 3.
Interesting.
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