Jack had his 6 month check up with Dr. Cogen. The good news is that his optic nerves appear unchanged. His prescription for his glasses have also not changed. Dr. Cogen told us again that he is mostly prescribing the glasses to protect Jack's eyes to preserve the vision he does have.
Dr. Cogen told us that Jack's optic nerve atrophy is "grade 4" and at this stage of atrophy his optic nerves will not swell. He said that there would have to be dramatic changes to the optic nerves for him to be able to see a difference with the naked eye. This kind of takes out one avenue of assessing intracranial pressure (pressure in Jack's head) between MRIs.
Our biggest indicator for pressure changes now will be neurologic signs and symptoms that Jack may exhibit. Fortunately, Jack is more active than ever and he communicates more everyday. This will make it easier to notice neurologic changes.
We'll continue regular follow ups with Dr. Cogen so that he can monitor the optic nerves for any major changes and also to regularly assess for problems that are emergent but may not be readily obvious since the usual symptom would be loss of vision--something that would be hard to assess in Jack.
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