Starting up front by saying I am sorry about the length but I want to make sure that you have all the info to answer my questions at the bottom if you can. These questions are geared more to a physician but any input would be most appreciated. :d
on february 25 of this year my 7 ½ year old son collapsed/passed out on the floor at school and with a seizure. He had just gotten up out of his seat to go get a drink. The seizure was on both sides of the body and was less than a minute - he didnt bit his tongue nor did he wet his pants. When he started coming around he was disoriented and his hands were clammy. We saw his pediatrician that afternoon. He was diagnosed with a viral infection (with severe cough and congestion) and we were told to continue the usage of the decongestant. There was no fever involved with any of these symptoms to this point and over the previous 3 weeks that he has had the virus. The same day he also had ekg done (normal) and blood work (normal for viral infection). The pediatrician stated that the seizure was most likely due to the viral infection but an eeg was scheduled for the next available appoint on march 26. Please note that 1week after the viral infection diagnosis we were back in the pediatricians office with a fever and he was now diagnosed with strep throat & received a penicillin shot. For the march 26 eeg appt he was symptom free for any infections. The march 26 eeg results: technical summary: the occipital dominant rhythm is 9 hz and is mixed with fused slower waveforms. There is low voltage 18-22 hz activity in the anterior regions and moderate voltage 6-8 hz activity in the central regions. There was a single burst of 2-3hz abortive spike and wave activity seen. Hyperventilation: there is no significant change with three minutes of moderate overbreathing. Sleep: there are no focal or lateralizing features and no abnormal waveforms. Photic stimulation: during photic stimulation the patient experienced a photoparoxysmal response with bursts of generalized abortive spike and wave activity elicited with various frequencies of flickering light. There were no clinical changes during these bursts. Impression: the electroencephalogram is considered abnormal in the presence of generalized abortive spike and wave activity and a photoparoxysmal response. These findings may be seen in patients with primary generalized epilepsy. The background activity is within the range of normal variation for age.
His regular pediatrician wanted us to see a pediatric neurologist. Our first available appointment was may 26th. We did not want to wait to see the pediatric neurologist. We saw an internal med physician with a pediatrics board cert who stated that a watch & wait approach for a seizure to happen again but wanted to get us to an adult neurologist for a differing opinion since we couldnt get in to see a pediatric neurologist for 2 months. The regular neurologist stated that she was concerned that he was too old to have febrile seizures, but did not have enough knowledge of pediatric epilepsy and needed further information but for now it was our decision to watch & wait or to medicate. She scheduled a mri without and with intravenous contract to look for scar tissue the mri was normal.
Other history that might be pertinent: our son was a tracheoesophogeal fistula baby and had corrective surgery at birth (he was considered a full term baby). He was diagnosed with a cognitive learning disability at age five. Three weeks after the march 26th seizure he was diagnosed with moderate-to-severe adhd and was started on adderall 10mg per day. His maternal great-grandfather died at age 37yrs old of a grand mal seizure (of his great-grandfathers siblings 4 of the 7 had seizures).
Snap shot of the may 26th pediatric neurologist appt stated: that greater than 50% of the time at any time he could have another seizure. His brain activity shows seizure discharges all over not in one area. He is never to take a bath by himself, nor is he to ever go swimming by himself. His motor skills are that of a 6 year old. The pediatric neurologist is recommending lamictal. We will start off at 25mg per day and over the period of 5 weeks we will build to a dosage of 150mg per day. The pediatric neurologist stated that lamictal was relatively side effect free there would be no issues with it interfering with the learning process and he wouldnt have that doped effect. It also would not interact with most other drugs. He might develop a rash and if so we are to immediately stop the medication and call.
My questions are as follows:
1. Is lamictal actual this fantastic for a child with minimal to no side effects? (ie was what the pediatric neurologist stating correct?)
2. For a child who has only had 1 visible seizure and he was sick at the time, would medicating for seizures at this time be reasonable & necessary or would you recommend watch and wait?
3. Without medication where do we stand in our son actually having another seizure? Petit mal? Grand mal? What cognitive impairment could we expect?
4. Would you recommend a low-carb or ketogenic diet before medicating?
5. Any additional information about the eeg and the severity of it would be helpful in understanding it.
I'm not a physician, but I can offer some advice. See an epileptologist at a large comprehensive epilepsy center if you can. There must be one there in houston. Even if you have to drive 2 hours it will be worth it. Pediatricians and general practitioners know close to nothing about epilepsy, and most neurologists don't know nearly enough. I didn't get help until I found an epileptologist, even though I had been to various pediatric and adult neurologists for years. And make sure you like and trust the doctor.
Also, i've tried numerous meds for seizures and i've been on lamictal for 5 years. All anticonvulsants have side effects. (think about it; they're messing around with the nervous system!) do some research online about it; you should find a lot of useful info.