1) The EEG demonstrated that Sophie's seizures have transitioned from Absence to Focal (stemming from one or two spots on the brain rather than all over and a different level of electrical spike from my understanding). These are only happening when she sleeps, but it is unclear if she might be having them steadily throughout the night or just randomly here or there.
2) Having Absence Seizures puts her at a much higher risk for having a Tonic Clonic (Grand Mal or Big, Scary Seizure). We should have an emergency medicine on hand for if this should happen, which has now been prescribed. Probably something we should have known. We were warned again not to let her swim alone or bathe alone just in case.
3) The Neuro Psych evaluation is way overdue. She was surprised that there is not already an IEP in place, and does not believe that a 504 plan will provide sufficient adaptation. She is hopeful that then Neuro Psych assessment will come with IEP suggestions that can be sent directly to the school. I have to admit I was overwhelmed when she asked if Sophie was "still in a standard classroom".
4) Sophie was overdue for having her Depakote levels checked and should also be having blood counts done. This led to a trip to the lab last Saturday for four vials of blood to be drawn (the phlebotomist actually verified that she could take all the blood required based on Sophie's weight). Sophie cried some, but it was worth it for the McD's hash-browns she earned as a reward!
5) We cannot even begin to consider weaning her off the Depakote until she is seizure free for two years. This news did burst our bubble because we've been having her see a Chiropractor with hope that it would help with the Epilepsy and that perhaps at some point we could lower her medication dose. However, no regrets on the Chiro because her immune system has been SO much better this year than last. She has yet to be sent home from school and her asthma is much better controlled--both of these have been huge steps forward.
Since the appointment, the results of the blood work have come back. Her Depakote levels were therapeutic which was good to hear, but her platelets are low. Apparently this is a common side effect of Depakote (which perhaps had not been monitored by Sophie's previous neurologist), so although she's still having seizure activity while sleeping, we are lowering her Depakote dose in the evening. She is now getting 250 in the morning and 250 in the evening, 125 mg less than before. We have two weeks on this new dose to monitor her for seizure activity and then redo the labs to look for improvement.
In the mean time her Neuro Psych eval is scheduled for early November and the school observations should be taking place in the next week. I'll challenge myself to update as things develop. Our next major step will be an overnight EEG at Lurie's in Chicago but that might not be until December or January as we work at taking things one step at a time. Thanks for your support and care.
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