I'm just reading this thread for the first time, and wanted to say that when my daughter presented with seizures (at age twelve, but looking back we believe she was having seizures since age 3-4, we just didn't know what we were looking at..at age 12 her seizure symptoms became more pronounced).... she also had both motor and verbal tics. The neurologist was never clear whether he felt these were part of the seizure activity or not... but she had facial grimace tics, heavy blinking of eyes tics, head to shoulder tics, and some vocal tics as well. Thankfully, her seizures were confirmed on several occasion during EEG.. so we knew that much for sure.
She also had what seemed to be a mild dystonia, where she would arch and twist her back uncontrollably...sometimes right out of a chair. The neurologist had no explanation for that. She had a lot of muscle spasms in her back during this time.
As for her seizure types, the 'worst' looked like passing out with rolled back eyes and mild jerking after. She also wandered, staggered, acted drunk, had confused speech, lip smacked, rolled on the ground giggling, chewed her tongue, had blank stares, hungry spells, tickling in her stomach, phantom odors, visual disturbances and more during her six to twelve months of seizures. I think that pretty much includes everything but tonic clonic. The neurologist would only classify them as generalized, but in the end felt there may have been a focal point, with secondary generalization.
She did initially gain seizure control on Depakote over about six months time, but responded most noticibly when we added vitamins (B6 and magnesium, multivitamin). In the long run, we discovered she was B6 deficient, and believe this to be the primary reason for her seizures. She is also gluten sensitive, but remains seizure free even though she is not on a gluten free diet (now age 20). She has been off medication and seizure free for over five years now.
Her sister had symptoms of gluten ataxia prior to a gluten free diet, and all of her symptoms resolved on a gluten free diet. (staggering episodes, slurred speech, drooping eyelids, periods of limp body fatigue, leg weakness/drag). She also had significant GI symptoms and skin symptoms..all resolved. SHe has been on a strict gluten free for over five years now.
So, I hope you will read about gluten sensitivity/celiac disease and its many diverse neurological manifestations... as it associated with a wide variety of neurological problems... including SID, hypotonia, oral motor, apraxia , seizures, tics, learning and motor delays, ADHD, and more.
Quote:
OBJECTIVE: During the past 2 decades, celiac disease (CD) has been recognized as a multisystem autoimmune disorder. A growing body of distinct neurologic conditions such as cerebellar ataxia, epilepsy, myoclonic ataxia, chronic neuropathies, and dementia have been reported, mainly in middle-aged adults. There still are insufficient data on the association of CD with various neurologic disorders in children, adolescents, and young adults, including more common and "soft" neurologic conditions, such as headache, learning disorders, attention-deficit/hyperactivity disorder (ADHD), and tic disorders.....
CONCLUSION: This study suggests that the variability of neurologic disorders that occur in CD is broader than previously reported and includes "softer" and more common neurologic disorders, such as chronic headache, developmental delay, hypotonia, and learning disorders or ADHD. Future longitudinal prospective studies might better define the full range of these neurologic disorders and their clinical response to a gluten-free diet.
Range of neurologic disorders in patients with celiac disease. PMID: 15173490
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You can check The Gluten File below my name for much more information, and scan the right bar for the topics that might pertain. There is diagnostic testing available, and that is also explained in The Gluten File.
Cara