My daughter was DX at 4 weeks old with cortical dysplasia,schizencephaly, complex partial seizures and infantile spasms. She has been on phenabarbitol, topamax ,acth and vigabatrin. nothing is working to stop the spasms. Should I consider surgery? She is now 5 months old.
My heart goes out for little soul.
Schizencephaly patients are usually mentally retarded with seizures which are difficult to control with spastic quadriplegia.
Surgery should be considered for children with intractable seizures unresponsive to anti-convulsants.
An EEG is critical in documenting the localization and extent of the epileptogenic discharges. The results of surgery in children with a well defined focus of epileptogenic activity supported by an identical structural lesion on CT Scanning or MRI scan are extremely favorable and are comparable to those in adults with similar pathology.
Surgery for complex partial seizure is usually indicated for patients who have frequent, disabling seizures despite adequate trials of 2 or more anticonvulsants. The procedures that could be performed include corpus callostomy, temporal lobectomy, extratemporal resections, hemispherectomy, placement of a vagus-nerve stimulator, etc.
It would be advisable to discuss with your neurologist the possible surgical procedures that could be done for your daughter, as well as their pros and cons, to help in your decision
Well, my daughter is now 16 months old. She had left hemispherectomy at 9 months old. Today she is seizure free and off all meds. she has hemplegia on her right side. Lots of therapy and love...she is getting better. Surgery was the best decision for her. She is a little delayed but catching up. I never thought we would be free of the evil seizures.Iife is starting to become somewhat normal. Thanks!
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