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Is it some kind of Epilepsy?

Hi.  I am a first time visitor to your forum and appreciate the opportunity to ask a question.  My daughter is 9 years old.  She has some history of brain injury from a fall in early childhood and was also exposed to drug abuse prenatally (she is adopted).  From the ages of 3-6 she had occasional absence seizures.  She had an EEG when the seizures started at age 3 which was normal.  Her whole life I have always been told from any doctor she ever saw that this type of seizures was a benign condition which she will probably outgrow. 

 About a year ago she began experiencing very frequent and severe headaches.  The pediatric neurologist did an EEG which was normal and said it was just migraines and put her on a preventative drug which did not help.  She is now on her fourth preventative drug.  A few months later she began experiencing these types of attacks which last about fifteen minutes with severe burning, electrical type pains.  She has had them in different parts of her body and are sometimes also associated with muscle cramps.  She has had them inside her head, in her left eye, on her spine, in her feet and neck but they only happen about once a month.  A few months after that she began experiencing episodes of tunnel vision, double vision and blurry dots in her field of vision frequently.  These visual problems are not constant but probably happen at least a few times per week.  She also has episdoes where her left eye closes and she can't open it, sometimes for a few days at a time.  I think she may have had some new kind of seizure a few months ago, too but I can't be sure.  At the time, she was talking to me but she didn't really seem to be making sense and her eyes were moving back and forth all the way across her eyes kind of like a pendulum.  After it stopped she seemed to be confused and didn't seem aware of this behavior.  I only observed this one time, however.

Her eyes have been checked by an opthamologist and a neuro-opthamologist and are normal.  She has had an MRI of her brain (normal except for a small area of old brain damage which probably happened pre-natally).  Her pediatric neurologist says that she just has regular migraines and her visual complaints and complaints about burning pains are just "school avoidance" and "attention seeking behavior".  He said her history of head injury was not relevant and her MRI results with brain damage were just an incidental finding.  We only have the one pediatric neurologist in our state so my options are limited.

The neuro-opthamologist suggested that it could be seizures and she might benefit from a video EEG.  Does this sound like any kind of seizure disorder anyone is familiar with?  I'm just trying to figure out a direction I need to go with this or if I should just accept that this is just migraines since I will definitely need to take her to another state if I want any assistance with a different diagnosis.

thanks!

Comments

Re: Is it some kind of Epilepsy?

First off, it sounds like you should switch neuros.  If he/she is only willing to stick to a diagnosis that has been given before, it is time to change.  A neuro should listen, address concerns, and work with you (notice I said "with" very important) to resolve the problem(s).  The other issue is that oftentimes people have a normal eeg and/or brain scan even if they're having seizures.  I'm not one of those (closed head injury in 2000).  Do know that the scar tissue may be part or hiding brain damage.  Along with the drug issues she had with her birth mom, it is quite possible that the brain is operating differently, thus the seizures.  I'm not a neuro, but it sounds like you'd benefit from seeing and talking to another neuro.  I have no clue whether this could be a seizure (I haven't been trained for that!  LOL).  There are so many different kinds of seizures that it boggles my mind!  Take care of yourself and your precious daughter!

Re: Is it some kind of Epilepsy?

Like seakats, I'm not a neuro, but head injuries can have serious implications:

According to brain injury.com:"Seizures may develop immediately after an injury to the brain or may develop in delayed fashion, showing up months or years after the initial trauma. Generally speaking, the risk of post traumatic seizures is related to the severity of the injury -- the greater the injury, the higher the risk of developing seizures. Even mild to moderate injuries can result in seizures.

There are many kinds of seizures and seizures are not an uncommon condition among persons without head injuries. It is thought that a head injury disrupts the pathways of the brain and that an epileptic seizure can be viewed as a sort of short circuit of the brain's electrical functioning. During the seizure the electrical fields in the brain are overloaded, resulting in seizures.

The most commonly seen seizures related to traumatic brain injury are "generalized" seizures, which are also called "Tonic-Clonic" or "Grand Mal" seizures.

Persons who have had head trauma are twelve times as likely as the general population to suffer seizures (Willmore, 1992). Patients with acute intra cranial hematomas also have a high rate of epilepsy. While there are contradictory studies, the more recent study (Lee, 1992) showed that of 4,232 persons suffering mild closed head injury, 53% had early post-traumatic epilepsy. Approximately 57% of head injured individuals developed epilepsy within one-year of injury. Longer onset epilepsy beginning more than four years after the trauma occurs in 20% of patients who developed epilepsy. It is estimated that 30% of all individuals suffering head trauma developed post-traumatic seizures and 80% of the time they occur within the first 24-months (Bakay, 1980).

 Also, I think a Video EEG would be very helpful. I know a guy who had 5 EEGs (which showed up negative), before he was properly diagnosed with a VEEG. An abnormal EEG does not diagnose epilepsy nor does a normal EEG reading exclude it.

Video EEG Monitoring – allows prolonged simultaneous recording of the patient’s behavior and the EEG. Seeing EEG and video data at the same time, permits precise correlation between seizure activity in the brain and the patient’s behavior during seizures. Video-EEG can be vital in the diagnosis of epilepsy and epileptic seizures. It allows the doctor to determine: Whether events with unusual features are epileptic seizures…the type of epileptic seizure, and…the region of the brain from which the seizures arise.

It seems like your daughter could benefit from that.

Also, if you are looking for a new neuro, you might find this link useful: NEW Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors . It's been compiled by eforum members like you, based upon their own positive personal experiences. 

I hope this helps...     Phylis Feiner Johnson    www.epilepsytalk.com