For me and for Lemony…everything. We finally have a name for her weirdness. Familial Hemiplegic Migraine. She was having some subtle symptoms today that her new neurologist picked up on immediately. Speaking of the new neurologist, I was impressed. She was personable and knowledgeable. (In the past, Lemony’s doctors seemed to be one or the other.) She knew about eosinophilic esophagitis, and she has cared for other children like Lemony who have both. Why they have both is still unknown, but the fact that she sees a connection is significant to me.
The diagnosis of FHM has been tossed around and then rejected for Lemony by her geneticist and her previous neurologist because the genetic testing was negative for the gene that can cause FHM. Today I learned that the very doctor who discovered the FHM gene works in the same Children’s Hospital as Lem’s new neurologist–and she acknowledges that there are probably many more genes involved that must be discovered. So far, she has found three genes.
We also seemed to be going away from the epilepsy diagnosis. No one can say for sure , but most of Lem’s episodes can be definitively linked to complicated migraine. Including her weird eye problems–basically these are hemiplegic attacks in her eye muscles. If we see any of the other seizure-like episodes, they will schedule a video EEG. I haven’t seen one of these in a few months, so I am hopeful we are past all that.
All in all, I am relieved. We have someone to care for Lem who has seen children like her before–this is just huge for me! I feel like we are no longer fighting this alone.