Sam's First Care

Sam's health care was really a wonder to us. NF is not a well known disorder so finding specialists was a struggle. Every book we read told us to develop a team of specialists; neurologists, opthamologists, pediatric neurosurgeons, pediatric occuloplastic specialists and so on. There is no one like that here in Ocala, that is for sure.

So our closest place was Shands @ UF. We found some great eye specialists there. Dr. Kuddus was one of the first to see Sam. From there we saw other doctors at Shands. Eventually that is where we went through some genetic counseling and had blood drawn from Sam which was sent off to UAB. We should have seen that back then that UAB was the place to go.

We were then made aware of the Bascom-Palmer Eye Institute and Jackson Memorial Hospital and Miami Children's Hospital. So our next round of "outings" was down to Miami. We met Dr. Tse there while we were looking for a second opinion about a surgery, one that a doctor at Shands said he "had done a few." We were very skeptical about that surgeon. A "few" of any surgeries to not enough for our son.

We met several doctors in Miami and fell in to the care of a glaucoma specialist. Sam's orbit pressures were followed closely. I think when Sam was 3 he had a surgery to relieve his high eye pressures. We later learned that his deformed eyeball was due to the glaucoma, not any tumors. Personally I think we waited too long for his first surgery but hindsight...blah blah.

I can't remember how we learned about the NF Clinic at UAB. It may have been through Grandma's efforts and tireless letter writing. We eventually made it to Birmingham and fell in love with the team care. When we say team, I mean team.

Some of the worlds leading NF researchers are at UAB. There are nine NF Clinics in the US and UAB is the hub for the southeastern region. For us, it takes about 8 hours to get from Ocala to Birmingham and we go there about every 6 months or so. Their follow up is amazing.

Besides driving through Georgia I don't mind the trip. Sometimes our stay in Birmingham is too short so the driving there and back is a hassle. Cost is another issue but whatever it takes.