Is it really JAE?

Asking another question???Are you the doctor???  Your answer to that questions is NOMost neurologists know the medications that can control the seizures because they have other patients with the same seizures that are the same size and age.Do you know how medications are tested?? Your answer to this one is also NOI have been in new drug tests.  I know what the older medications did to me and I want the newer medications to have fewer side effects and to work better. I used the diaries and wrote down what the company wanted to see in it. Did anything different happen that day? If you had a seizure was it shorter? Was there a trigger? Many other questions. Including medications and when they were taken.Do you know medications are created for one type of seizure? Yes would be your answer. Yes medications are created to treat and control one type of seizure and one approved it can be sold.. However the testing then starts again. It is then tested to see WHICH OF THE OTHER SEIZURES IT CN CONTROL. It is then tested to see which medications it can be coupled with to control different seizures, It is tested to see if a lower dosage will control tremors. You have seen someone that has tremors. Hangs shaking now and then. Generally a person that is getting close to being a senior citizen. Now you see that just because the medication was created for absence seizures the testing goes on and I have taken many different seizure medications in the 50+ years I have had epilepsy.I will use what I have gone thru. Yes there are absence seizures. There are tonic clonic seizures. There are also focal seizures.Those are names used to day. My diagnosis was Grand Mal (tonic clonic). Pettie Mal (absence) and Focal motor epilepsy. Focal seizures can LOOK LIKE absence seizures and the person in them can think and hear but responding is delayed. You see I have had them and still do. All of those dat dreams in class were focal seizures. Focal seizures start in one area of the brain. For me it is the area that controls my right hand. It went numb or felt weird. However focal seizures can generalize. Meaning moving to other areas of the brain. If that happens he is then in a partial seizure. Or any of the partial seizures there are.  He can have a generalized seizure. Or if it fully generalizes, (covers the entire brain then that seizure will look like a Grand Mal (tonic clonic ) Seizure.I do know about the testing because the Texas Epilepsy Group is the group of neurologists I have been with since 1971. Working with them I have gotten my seizures from minutes long to seconds long, The time to get back to normal in those long seizures was another 15-45 minutes and at times longer. Today those seizures are seconds in length and the time to get back to normal is minuscule. People today would not know I have them. 

I wasn't sure if the episodes we've seen are absence seizures given that he is aware of them when they're happening.  Honestly, it does sound more like focal seizures based on what you say and what I've heard. But eeg showed absence seizure activity (I guess the wave pattern and where it manifested) and didn't show focal at any point (so didn't seem like it started as focal and generalized during the eeg), and only during hyperventilation portion.  It wasn't a long eeg, though. I know that meds approved for a given type of seizure might also treat others, but the literature seems to indicate that Zarontin doesn't treat and perhaps worsens focals. The doctor was out today but I'm hoping to talk to him about it tomorrow. I think that when we met with him after the eeg, I didn't know that my son was still "present" (albeit in a fog) during his "zoning out" moments and wondered if the doc knew that if he would have adjusted his diagnosis and prescribed something different.  I thought focal seizures were longer and had a fuzzier start/stop point, but maybe I'm wrong.  My son said he never experiences anything other than feeling zoned out (no other apparent physical or sensory issues.  I started a log a few days ago. For each day, I note when he took the med, what his day was like, and what his night was like (the insomnia is awful these days). I note any observed seizures and told him to tell me if he's aware of any others.  His teachers are supposed to tell me as well if they observe something that might be one. 

he definitely has absence (EEG patterns make it certain, JAE part is something to ask) and while he could have other types of seizures, there are a lot of variations when it comes to seizure presentations so you may just be seeing something that isn't odd for the doc but isn't in any common description/presentation. but don't ask too many questions, you won't be able to really digest all the info and there's only so much time, ask the top few each time when you've asked the immediate need questions and the doc has time. our child has had simple partials (different kinds), complex partials rarely, atypical absence and myoclonics. only atypical absence and myoclonics have been seen on eeg, although epileptiform discharges related to partials occurred early on when the simple and complex partials were the only seizure types experienced. partial/focal eeg evidence can be hard to catch, some people have partial seizures that aren't seen on eeg, there are just some physical limitations of the test. that's why eegs mainly rule in epilepsy, ruling out some types of seizures is possible for a few generalized seizure situations (e.g. appears so on video but no tonic clonic on eeg, not a tonic clonic).as our child increased meds, simple partial seizures notably shortened in duration and reduced in frequency. at some point they started becoming less frequent without med changes which was good because meds never completely controlled them. now we go 3-4 months between them. for checking if the atypical absence and myoclonics were under control, we just did an eeg about 5-6 weeks after the multi day eeg that showed them. change in meds we did from longer eeg didn't require waiting that long but scheduling was best after holidays.