🙏 JOHN’S FAMILY RECEIVES NEW ANSWERS AFTER A DIFFICULT NEUROLOGY APPOINTMENT
John’s family recently traveled to Dallas for a neurology appointment focused on two major concerns: his seizures and dystonia.
According to his family, John’s new neurologist agreed with his Kansas City neurologist that the unusual movements happening every day appear to be clonus rather than continuous seizures. Because there is still uncertainty, the family plans to proceed with a previously scheduled five-day EEG to make sure they have the clearest possible answer.
The family says John does experience occasional seizures, particularly when he is sick, but they now feel more confident that his daily abnormal movements are not seizures.
Doctors also discussed John’s severe dystonia. His new neurologist reportedly said that many of the medications typically considered for treatment have already been tried and strongly recommended that the family revisit the possibility of a baclofen pump. Because John is so young and the procedure carries risks, his family is carefully considering the decision with his medical team.
The appointment also brought an emotional reminder of just how serious John’s condition is. His doctor reportedly described him as one of the most severe cases of Gaucher disease he has encountered.
Through all of the uncertainty, John’s family continues to focus on one hope above everything else: seeing their little boy live as comfortably and pain-free as possible.
They are asking for continued prayers for John, wisdom for his doctors, and strength for everyone caring for him. ❤️
