She does not think Leelo has Landau-Kleffner (nor do we), as it is usually detected late -- around age three -- and by Leelo's age we'd generally be seeing significant seizure activity. But it is also not something that can be ruled out by the comprehensive genetics panel we had done on Leelo four years ago, as part of his Stanford Neurology Grand Autism Diagnosis Tour. And a definitive diagnosis requires a 24-hour EEG session. Not happening any time soon.
An abnormal EEG doesn't necessarily mean seizures are happening. The "spikes" in Leelo's EEG means that he is at risk for seizure activity, not actively seizing. Even if he was having seizures, there is no guarantee that a seizure will actually happen during an EEG. EEGs are done using surface electrodes, and as such cannot really pinpoint any specific area of the brain. She said EEGs are like trying to determine the activity of fish in the sea via buoys on the surface. Sometimes a whale surfaces and you see specific, measurable activity; otherwise it's hard to really know what is going on below the waves.
Most doctors will not use EEG abnormalities as a basis for treatment unless they are accompanied by documented seizure activity. So, unless we are seeing regular seizures, it is in her opinion risky to start trying seizure medications, as the goal in medicating seizures is to strike a balance between the gnarliness of the seizures and the gnarliness of the meds. Medications might even put him into the brain fog we were worried about and for which we currently have no evidence.
Evidence is important, because no one really understands how or why seizure drugs like Depakote or Lamictal work. And their side effects are can be horrible (liver damage, unusual bleeding, hallucinations, life-threatening skin reactions).
Leelo's absence episodes are infrequent enough that she does not recommend experimenting with potentially detrimental 2x/day medications on our non-compliant boy. And absence episodes are usually not indicative that other types of seizure activity is happening. However, if they do start to happen more frequently, then they should be treated with medication to prevent kindling, i.e., a seizure frequency snowball effect.
As for his migraines, we should first try a Tylenol/Ibuprofen cocktail taken as soon as we see any symptoms. We need to be vigilant; fast and early treatment is critical. However, the Tylenol and Ibuprofen will not be as effective if he has been using them a lot recently (he is currently getting Tylenol 1x/day for a back-gum-perforating new tooth). Overuse of them is similar to coffee abuse; they are not as effective day-to-day, and going off them can cause a rebound effect.
Conclusions: We don't need to do anything except be aware of possible future seizures and migraines, document both, and treat migraine symptoms as quickly as possible.
The best part of the appointment was at the end, when Leelo refused to leave the office without getting an exam on Dr. Sheyenne's exam table. Because that is what you DO when you see a doctor. Then Seymour took Leelo to school. And I went home, feeling satisfied that we had investigated the seizure avenue, disappointed that our boy and his brain mystify so many people, and relieved to not have to wrestle with that boy so as to introduce a new medication.
Technorati Tags: autism, autism blog, autistic, medication, migraine, seizure
Relief and frustration in one visit! Relief, of course, that Leelo does not seem to have a clear-cut seizure disorder; frustration because...well, no clear answer.ReplyDelete
As someone who suffered from absence seizures in childhood and head splitting migraines most of my life (and now wondering if the two are related?), I can test on the efficacy and importance of taking pain relief drugs early. I am sure that Leelo can feel the migraine coming (we all do) it would be great if he could learn to let you know when this happens.ReplyDelete
Have you also checked Leelo's sight? When I had changes in my vision, migraine episodes increased in intensity and frequency.
I know, more to worry about....
Leelo's vision was checked in April. It is perfectly perfect. Thanks.ReplyDelete
I'm sorry you didn't get more answers-- so frustrating.
I have gotten complicated migraines (aura, numbness in face and hands, nausea, confusion) since I was about seven. They're hereditary--Dad and Sis have them, too. I learned to recognize the aura ("holes" in vision, flashing lights) as the signal to get help. At school, that meant going to the nurse for aspirin and to lie down in a dark room until someone came to pick me up. Has Leelo described auras or other symptoms to you? I hope not, but these can be signals to take pain meds to help with the headache to come.
Praying for you and Leelo and your family.
Thanks. My mom and I both get the auras without the other side effects you describe, lucky for us. I'm guessing Leelo might get it too. But he can't tell us. He does squint sometimes, I'm wondering if he's seeing an aura then. But it's not alway correlated with the head pain episodes.
Glad you're able to recognize the onset of an episode and get help.