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siezures unknown reasons

my 19 month old daugter has had siezures scince birth and now they are more often. she doesnt have them everyday but about every 6 weeks we end up in kosair hospital and there very hard to control she is on a pintobarbital drip 1.5 per kilo per hour she is 10 kg last know level was 9, and gets phenobarbital q12 levels been around 90-100, depakote q12 level unknown, calizapan q12, topamax q12, triliple q12, and started ketogenic diet, they have noticed a slight enlargement of left ventricle compared to first mri and ct she ever had done, but everytime they turn off drip after a few hours she starts having siezures she has had a lp done to check for infection but neg. fluid was clear and i think they said the pressure was 28 or 280 whichever one ,akes more sience to you. there thinking the water spots might be what causing this any ideals or suggustions i could ask our dr.? she also has hypertonia in upper body, duplicate chromosone 17p11,2 but me and mom was tested and she got it from mom could this mean anything as well because her mother has never had any problems? they are also talking about vns do you think that would benifit her?
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Avatar universal
How is your daughter feeling now?
Is a metabolic cause been ruled out as cause for seizures?
Why is given ketogenic diet?
Duplication of 17p11.2 suggests Charcot-Marie-Tooth disease.
This disease is the most common genetically determined neuropathy and has an overall prevalence of 3.8/100,000. It is transmitted as an autosomal dominant trait with 83% expressivity.
Nerve conduction test are helpful in determining the progression of lesion.
Ventriculomegaly can be due to obstructed CSF flow.
Vagus nerve stimulation (VNS) is a treatment for epilepsy where a small generator is implanted under the skin below the left collar bone.
The generator sends impulses from the Vagus nerve in the neck to the brain and delivers therapy in two ways:
1. A doctor programmes a 24-hour a day, seven-day a week "dose" of intermittent stimulation. One such dose frequently used is 30 seconds of stimulation followed by a five-minute period of no stimulation. The stimulation is automatically delivered.
2. When a patient, a family member or a caregiver senses a seizure coming on, they can pass a magnet over the area in the chest where the generator is implanted. This activates an extra, on-demand stimulation.
VNS will help intractable seizures.
Medication will continue as normal while receiving stimulation, for at least the first three months after implantation. After three months, the doctor will review the person’s medication and advise them if they need to make any changes.
Hope this helps.
Avatar universal
she is basicly in a medicaly induced coma to stop siezures. the keogentic diet is for siezure control basicly it allows ur body to live off fats instead of protien and carbs and yes she has been tested for metobolic disorders as well as every other gentic test that can be done and (cmt)disorder has been ruled out
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