This past Wednesday we went to Dallas to meet Dr. Fearon, who I would easily say is the top expert with craniofacial anomalies in this country. Here is his “small” list of his publications on craniosynostosis.
Dr. Fearon’s assessment of Jameson was pretty much the same as everyone else so far – that Jameson is affected by the most mild form of Pfeiffer syndrome. He recommended that Jameson wait until 12-15 months for his first cranial vault to release the sutures, and in the meantime monitor Jameson’s head growth with measurements and pictures as well as his cranial pressure with an MRI and continuous eye appointments to check his optic nerve for changes. Right now Jameson’s head circumference is 36cm, which puts him in the 25th percentile – so he’s good for now. His last eye appointment showed no signs of pressure and his follow up is this next Monday. Dr. Fearon also recommended that Jameson be put on reflux medication. Even though he doesn’t have issues with spitting up right now he explained that since the acidity levels tend to be higher in kids with Pfeiffer’s it’s better to go ahead and start them on it now to prevent damage and discomfort.
Our visit was fairly short, we pretty much know as much as we can about Pfeiffer syndrome right now. One new thing that we did learn was that there is a chance Jameson’s GI track could be flipped and his appendix might be on the other side. Down the road we’ll get him tested to see if this is the case with him, and if so it will have to be reversed.
The best case care plan for Jameson with Dr. Fearon would look something like this –
- First cranial vault at 12-15 months.
- Second cranial vault at 3 years.
- Third cranial vault at 7 years.
- And around 8 years if not a little later he will do the Le For surgery to bring Jameson’s mid-face forward. Here is an example of the results he has had with the Le Fort surgery.
He said that fixing Jameson’s thumbs is an easy fix, and he likes to wait as long as possible as long as they don’t bend more than 90 degrees in. I noticed a while ago that Jameson doesn’t have the joint in his index fingers and they only bend at the tips and Dr. Fearon said this is also an easy fix.
Decision Time : Scott & White vs. Medical City, Dallas
We like both doctors, so our decision didn’t really come down to Dr. vs. Dr. In the end we decided that we’re going to go to Dallas and Dr. Fearon. The bottom line is that where we live now is not going to be our permanent home. We’re a military family and there’s no telling where we will be 3, 7, or 10 years from now. It will be a lot more convenient to fly into Dallas than it will be to get to Temple – and we want Jameson to see the same specialist over the years. If he has problems with his hearing, vision or teeth we can easily see a local doctor, but for his major skull and face surgeries we’d rather have the same doctor.
Here are some pictures from our visit – Jackson really had a great time playing!