Go figure...Newly diagnosed and totally lost!

~~My daughter (7 ½) was diagnosed with Epilepsy last week. We have been battling with doctors and specialists for years! Most have said that her clumsiness and poor school work/behavior was all due to ADHD. She has had an insane amount of ear infections and is chronically sick.

I have brought up seizures with almost all of her doctors and they said she has no history and I could never be 100% sure of what was exactly going on. I didn’t know if her randomly falling was because she had an ear infection and her equilibrium was off. I didn’t know if she was choosing to not listen, especially since there was nothing consistent about when she would answer or not.

She is behind in everything; social, emotional, school, sports….you name it, she just never quite gets what is going on. Her spelling is atrocious and so is her hand writing. Her vision is impaired and it seems to be getting worse. I can tell that all of the above is really starting to affect relationships with classmates. She tends to play with the younger children.

Anyways, we have found an awesome neurologist and she has listened to everything I have had to say. She has run tests that I didn’t think were necessary, but all the tests she has run have brought up more issues. She started her on Lamictal and we are slowly titrating up to 50mg 2x a day. Our neurologist was very informative, but since I really wasn’t expecting this result, I wasn’t prepared for the appointment.

She did a 24 hr. EEG and her findings are as follows:

1) Interictal and epileptiform discharges were noted during wakefulness and sleep

a. Generalized poly spike and wave with bi-frontal predominance

b. Bursts of delta with intermixed sharp wave activity

c. Multifocal sharply contoured background activity

2) Intermittent slow wave activity in the delta and theta frequencies

3) Continuous background slowing for age

4) OIRDA

5) FIRDA

Above findings are consistent with diffuse or multifocal disturbance. The presence of OIRDA is highly correlated with epilepsy. This EEG is consistent with an encephalopathy. The neurologist said that the FIRDA was always bi-lateral and the OIRDA was always the start of a multifocal seizure. She also said that since she has two different types of seizures going on, she wanted to dose the meds carefully because she didn’t want to make matters worse. She said she is 100% positive our daughter does not have ADHD and all of her behavior, social, school, everything will improve once we get her seizures under control.

So what does this all mean?

- What type of seizures does she have? There isn’t anything on the diagnostics paperwork that says exactly what form of epilepsy she has.

- With these types of seizures, what exactly am I suppose to be looking for? I know that she stares, but is there anything else?

- How long before I will see an improvement? And what improvement am I looking for? I mean behavior isn’t going to change overnight, right?

I know I’ll have more questions, but I’m just so lost….