Minnesota or Bust

So we haven't seen any seizures since starting the clonazepam on the 24th. We were back in the ER on Sunday because Oliver had a fever of 102 and we had to follow our standard protocol of blood culture, cbc to check his absolute neutrophil count, and possible iv or shot of antibiotic. Jason spent the 7 hours there with Oliver while I put Tobin to bed and caught up on laundry. Sad that it's become a little routine. The good news is there isn't a bacterial infection and it's likely just a virus. He is now fever free and still has a bit of diarrhea but seems ok otherwise. I , unfortunately, caught the same bug and was super sick yesterday and still feel "off" today. Hopefully it passes quickly for all of us.

Interestingly enough, Oliver's ANC (Absolute neutrophil count) was 1192. anything above 1500 is normal. 1000-1500 is mildly neutropenic, 500-1000 is moderately neutropenic, and anything under 500 is severely neutropenic. Oliver has been in the severe category with counts under 300 for the past 2 months. Not sure if the increased count was due to the virus and his body fighting the infection or if his neutropenia is cyclical or if it's actually on its way back up. We have a hematology follow up tomorrow so they will likely do another CBC to see. if it's still up tomorrow and then up again in another week or so , I am going to ask the neuro to reconsider doing a short course of ACTH as long as his levels stay up while in the hospital. Would love it if the counts would go up long enough for us to take the opportunity to try a treatment that might clear his hypsarrthmia.

I got a voicemail today from the mayo clinic and they have us scheduled for Aug 16-18th! Finally, something to look forward to. I am very excited to have the chance to sit and talk with this dr who knows so much more about CDG and IS than anyone else we've met! Waiting on a call back from the neuro's office about the Clonazepam as they gave us a 30 days supply but never specified if he was to take the full course or if we need to gradually wean him down before stopping (or if they intend to stop)?

That's about all the news. We had a nice weekend before the ER visit. Spent Sat at a bbq at the neighbors and Tobin had a blast playing with his buddies. Sunday before the fever hit we went to the Morton Arboretum and Tobin got to catch tadpoles, play in the stream, and walk in a netted cage in the tree tops!