My 16 yo son sees a neurologist for Headahce and hx of seizures (grand mal, generalized with and without LOC, simple partial in his hands, complex partial, absence where he is completely non responsive, and atonic where his head flops or he completely crumples), dystonia (in his hands cramping stiffening up where he cannot move anything or release anything he is holding, will drop pans plates etc, and legs where they just kick automatically by themselves without him being able to control it, and loses muscle control in his legs where he will fall) and dysautonomia, dermatology for ectodermal dysplasia (overheats easily, does not sweat), orthopedics for cerebral palsy, rheumatology for SLE, PVL with Hypoplasia of the Corpus Callosum, Juvenile RA, Juvenile Osteoporosis, endocrinology for thyroiditis and Growth Hormone Deficiency, nephrology for nephritis, gastroenterology for GERD. He is on a multitude of meds: Baclofen, Myfortic, Plaquenil, Amytriptiline, Xanaflex (sp?, for the dystonia), diazepam & other meds for Many other problems. His eyes roll back in his head, are very painful, and get stuck. The seizures and dystonia all types started Sep 09 a mth after severe lupus flare resulting in chemo which started Oct 09 on Cytoxan/Rituximab. He had his first grand mal 1 day after his 1st Cytoxan. The Rituximab has been the only thing that ever completely relieved his headaches. Heat definitely is a trigger; he is worse in the summer. The rheumatoligists (2 different ones) say this is NOT from cerebral lupus. The neuro (2 different ones) say sz disorder & dystonia. Is the eye rolling w/out LOC a sz or dystonia? He is not on sz meds as he was refractory & we could not find a neuro to follow him. One neuro says dystonia & not sz & won't prescribe sz meds. Sleep deprived eeg normal, 8 hr eeg normal, & video eeg w/ 2 episodes recorded absence to generalized & 2nd generalized they said is normal & not sz. Every doc a different answer. Where do I go from here?
Your son obviously has multiple, very complicated problems which require very specialized care. I would suggest a consultation with a neuro-ophthalmologist at a University (teaching) hospital in your area. The neuro-ophthalmologists have a close working relationship with their University's neurologists, so maybe this way your son's care can be better coordinated. I wish you the best of luck.
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