neuronal migration disorder

I'm just wondering if someone could please give me some info.  My daughter now 16, had her first seizure(grand-mal) at 12.  Dx was Neuronal migration disorder.  Only treatment given was AED.  I'm very frustrated with this.  Do neurologist go to all the schooling just to prescribe medicine?  I cannot be given any information on her condition. She is mild-to moderately mentally retarded with epilepsy.  Current regimen is strict lifestyle measures and herbs for symptomatic seizures.  She has with this treatment still about 4 grandmals a year.  But I do this because her pediatric neurologist just prescribes meds.  I am completely desperate for some info besides being on the internet for 3 years and coming up with loose ends.  I know without an examination(which shes had many) you cannot tell me much.  But is there anything else I can do.  

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

It sounds like your daughter has been diagnosed with a neuronal migration disorder. Without the ability to examine her and obtain a history, I can not give you specific recommendations, but I will try to give you information about this condition and some treatment options.

Unfortunately, at this time, anti-epileptic medications are still the mainstay of therapy for epilepsy, though some surgical options are available (see below). Though antiepileptics have several side effects, not treating seizures can be detrimental to the brain.

Normally during development, nerve cells (neurons) migrate from one area of the brain to the other and form normal clefts and valleys on the surface of the brain. Sometimes, the neurons do not migrate normally but end up in areas that they should not be in. The group of disorders resulting from this are called "neuronal migration disorders", and the areas of the brain that do not develop normally are called "dysplasias".

It is also important to understand that some of the disorders of neuronal migration are associated with problems in other organ systems: if the nerve cells did not migrate properly, it is possible cells in other systems did not migrate properly as well.

Evaluation at a specialized surgical epilepsy center may be helpful: after extensive EEG monitoring and several imaging studies (which may or may not include high resolution MRI, PET, SPECT), neuropsychological evaluation, and other testing, if it is determined her seizures are coming only from the area of dysplasia, surgical removal of the dysplasia may be curative. Of course, there are certain risks that come with surgery and these have to be weighed against the benefits.

However, surgery should be done only after extensive evaluation: removal of a dysplasia without proving that it is the source of his seizures may actually be counterproductive, and the patient's seizures might even become worse. This may be difficult to understand, since if there is a dysplasia, it would be expected to be the cause of seizures and removing it would be expected to cure the seizures. However, epilepsy is complicated and this is not always the case. There are two seizure types: partial and generalized. Some seizures start off in a certain part of the brain (partial) and then spread (secondary generalization), causing a generalized convulsion. Seizures that are generalized from the onset (start in various parts of the brain at the same time) are usually not amenable to surgery, though some devices such as Vagal Nerve Stimulators (which sort of resemble a pacemaker that is implanted in the chest wall and connected to certain nerves) may be of some use in some patients.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.