Unpredictable: Neuro Consult Update (from his caringbridge)a"

I am sorry it has taken me so long to chronicle our appointment with Dr. Tennison. Partly, I have just been busy with other appointments, partly I have been trying to gather my thoughts. I am going to do this chronologically

We got there on time, checked in, were weighed, measured, and put in the room. At the specialty clinics, you have to fill out a ton of patient, medical, familial, and other history on the computer. When you are finished, the Doctor reviews it and then comes in to the room.

Meeting Dr. Tennison was kind of funny. He is Christopher Lloyd Weber meets Dick Van Dyke. I had lots of questions, I had them written in my notebook. I jotted down his head circumference 39.2cms and all his other measurements.

We talked about the movements in his hands- abnormal involuntary movements they are being called- as signs of a still-immature nervous system. He didn't feel an EEG was necessary, even with a family history of seizures, but did say that many children with micro do have seizures at some point in their life

We also discussed developmental delay, cognitive impairment, and mental retardation. This was one of the more difficult topics. 95% of children with microcephaly have some level of cognitive impairment, and because Silas has had developmental delay in the past he is more likely to be impaired in the future.

The most interesting topic for me was learning the differing causes of microcephaly: cerebral palsy/stroke, brain structure, or genetic/metabolic influence. Dr. Tennison ruled out brain structure and cerebral palsy/stroke as the causes of Silas' microcephaly based on his MRI and prenatal and birth history. He has congenital microcephaly, meaning it has been there since birth, and likely stems from a genetic/metabolic source

He performed a thorough physical exam of our son and noted any anomalies: sacral dimple, epicanthal folds, unique iris pattern, pointed ear, micrognathia (small jaw/chin), post auricular creases. From this and the measurements of all our heads, he decided we were candidates for genetic consult. The wait time for this is lengthy, but the outcome could give us answers to many of our questions

I left feeling both hopeful and cautious. The Dr. could give us no prediction of how our son would fare as time passed. He could not assure us we would find a genetic/metabolic link (only 50% do). There was no way to know whether Silas would speak, walk, or be able to eat typical age-appropriate food. The wait and see method is the most difficult to accept when it concerns the well-being of your child, but that is what we were advised to do

We go back in 6 months, right after his 1st birthday. Will he even be able to enjoy cake? Time will tell...