We got a phone call from Connor's neurologist today. Apparently he doesn't agree with the statement made by the "Hallway Team" yesterday that Connor is maxed out on his medications. So he upped Connor's Trileptal again relatively substantially. We haven't seen any side effects thus far, which is a good thing. They'll check his blood levels when we go in next Friday to make sure that they aren't overloading his one remaining kidney. We'd like to keep that working well, thank you very much. Hopefully this will do the trick. Finally.
It's about time for me to schedule his next round of appointments-- I was waiting for school to end so that he didn't end up missing a lot of it. For the yearly appointments it's not that big of a deal if we hold off until the summer to go. So I'll be making appointments with urology (they see him because there is no pediatric nephrology clinic at the on-post hospital), nutrition, GI, craniofacial, the developmental clinic, audiology, and the dentist.
Fun times.
~Jess
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5 years ago
5 comments:
E's big appointments are all scheduled for next month, so I can definitely empathize! He has to be put under for his annual MRI and it's awful.
I hope the neurologist is correct that this does the trick!! Thinking about you guys.
Good news on the medication- here's to no more seizures (all fingers and toes crossed for you guys over here)!
I'm also praying that your annual appointments go very smoothly (and quickly)!
And some parents wonder what they'll do all summer! ;D
We had a similar thing happen with our daughter. She started to have some new seizure activity back in October - we ended up in the ER. We were told she was at her limit on her Keppra and we were given Depakote. She did NOT react well to Depakote, so we made another appt with the neuro to discuss weaning her. While we were there, we found out that she had plenty of room to move up on her Keppra. So we were giving her a new med that did not agree with her all for nothing! We ended up weaning her and increasing her Keppra and she has been fine ever since. So frustrating!
I am really hoping this new med change does the trick for Connor!
Dawn
good luck with the medications!
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