chmmr
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Hi guys,
Here's the update on my dd. We saw the pediatric neurologist last friday (i had emailed them in june with the videos and updates about the two complex partials she had while awake and they were originally going to see her in November when they came to town for their outreach clinic but they wound up calling us and telling us they bumped her to the August clinic instead (they only come here every 3 months for 3 days, otherwise we have a 5 hour drive to see them). We haven't seen her for about 2.5 years, and the last time she did, she took my daughter off her meds (she was a year old), and had decided she wasn't having seizures.
Anyways she examined my daughter and was very happy with her exam, and didn't find any deficits or red flags. She read my print outs about the episodes (i had them all neatly listed with time, date, situation, and what happened). She agreed that the two episodes my pediatrician told me were complex partials, were likely seizures , and feels that she is also having episodes when she is sick too. We discussed putting her on meds again but she and i both agree that our episodes aren't frequent enough right now to have the risk of side effects be worth it. She did really push the idea of putting her on clobazam for a few days at a time when sick so she doesn't have issues (i'm not entirely clear on why-i guess having her on the meds for a few days would decrease the possibility of her having seen or unseen seizure activity, and prevent any possible damage? ). I said that i didn't really think we needed it now, but even though the neuro said she was ok with that initially she then really kind of pushed the issue so i agreed to take the prescription. (on a related note, i hate that i have to split a tablet into 3/4 in order to get the right dose. ugh.) Anyways long story short, we did finally get heard by the neuro (yay!) and i really felt like we had a productive visit. She said she feels like whatever it is my dd has, she will grow out of, but in the meantime we will treat her with meds when ill, and she wants to be notified of more seizure activity, and/or prolnged seizures so she can reasess if necessary.
Here's the update on my dd. We saw the pediatric neurologist last friday (i had emailed them in june with the videos and updates about the two complex partials she had while awake and they were originally going to see her in November when they came to town for their outreach clinic but they wound up calling us and telling us they bumped her to the August clinic instead (they only come here every 3 months for 3 days, otherwise we have a 5 hour drive to see them). We haven't seen her for about 2.5 years, and the last time she did, she took my daughter off her meds (she was a year old), and had decided she wasn't having seizures.
Anyways she examined my daughter and was very happy with her exam, and didn't find any deficits or red flags. She read my print outs about the episodes (i had them all neatly listed with time, date, situation, and what happened). She agreed that the two episodes my pediatrician told me were complex partials, were likely seizures , and feels that she is also having episodes when she is sick too. We discussed putting her on meds again but she and i both agree that our episodes aren't frequent enough right now to have the risk of side effects be worth it. She did really push the idea of putting her on clobazam for a few days at a time when sick so she doesn't have issues (i'm not entirely clear on why-i guess having her on the meds for a few days would decrease the possibility of her having seen or unseen seizure activity, and prevent any possible damage? ). I said that i didn't really think we needed it now, but even though the neuro said she was ok with that initially she then really kind of pushed the issue so i agreed to take the prescription. (on a related note, i hate that i have to split a tablet into 3/4 in order to get the right dose. ugh.) Anyways long story short, we did finally get heard by the neuro (yay!) and i really felt like we had a productive visit. She said she feels like whatever it is my dd has, she will grow out of, but in the meantime we will treat her with meds when ill, and she wants to be notified of more seizure activity, and/or prolnged seizures so she can reasess if necessary.
