Newly Diagnosed

Glad you paid attention to your gut! It's very possible that medication will address your child's seizures and that long term she won't need much from school - like a child who gets glasses, once they catch up on things that were missed, things are fine as long as they wear glasses. Unless your child's absences are unusual, they should respond to medication and in a few years they might suggest she wean off drugs, many kids are seizure free after a few years of medication and then weaning. So your conversation starts with her doc and might include topics like - are her absences common or unusual, what do most patients with these same seizures experience medically and for school for the first year or two, does she need any special medication at school (some kids can have bigger seizures that need medication to help stop them), is she likely to grow out of these seizures (not always the case, doc can't truly promise anything but still a better diagnosis to start with than most epilepsies), when do we check if the medication is working (with absence another EEG is common), what are any concerning side effects of her medication that I need to watch for, what other triggers might she have (like if she has some type of photosensitive epilepsy which they would catch on EEG, you would want to know more about that), is there any associated learning issue with her form of absence, etc... At school your child would be a candidate for a 504 plan, but she's unlikely to need any modifications. Your first step is to determine if she's behind (because people with absences can miss a lot of instruction because they can have hundreds of brief seizures a day until it's treated). Once any learning she missed is addressed, she should seem like most other kids.A lot of people have epilepsy but surprisingly very few other people know much and many make improper assumptions (most people only thing grand mal/tonic clonic when they hear the word seizure but absence is the second most commonly known seizure type for people I've run into - and my kid started with partials which are very hard to explain because there are a huge variety of presentations/experiences). You don't want the school staff to jump to conclusions. You probably want to know more before you share much more than you are working through a diagnosis for a health concern. I would not get people at school scared because it could impact how they deal with your child. I would stay low key, reassuring, always open to communication but clear once you do know what's needed or important.

Thank you so much for this information! I will write down many of these questions to send to the doctor for sure. I was so overwhelmed with the appointment as we told there would be no testing so I went with very few questions at the ready. I am starting the process working with the school quickly as my daughter is reporting getting in trouble frequently for not paying attention sadly. Hopefully most of this will be resolved quickly with the medication. 

When you say there would be no testing, was there not an EEG? That is common in diagnosing absence. There's a lot more likely to show up on EEG for generalized epilepsies. There are other attention span issues that are not from absence - one is a completely different type of seizure - complex partial/focal impaired awareness seizures can look like longer absence (clear EEGs do not exclude epilepsy - EEGs only see what's happening now and only sees stuff that has enough to trigger the equipment, deep or very small discharges don't show up). Our daughter's initial seizures were like long absences and lots of doctors/nurses mistakenly thought it indicated absence. I read about absence and thought this was not right but it wasn't until we described all the other little ongoing complaints our child had that the neurologist was nodding and explained this sounded like some other kind of seizure. EEGs never caught a partial occuring, only saw related activity associated with partial seizures. Had other seizure types show up on EEG years after the initial diagnosis.https://www.epilepsy.com/learn/types-seizures/absence-seizureshttps://www.epilepsy.com/learn/types-seizures/focal-onset-impaired-awareness-seizures-aka-complex-partial-seizures