Today is epilepsy awareness day.
Tonight we had Addysons quarterly appointment with her pediatrician. We go in every few months so we can catch up face to face on what’s been going on. This has been working well. It helps for him to see her often and it helps us to voice our thoughts/concerns and he gives us his thoughts. Today’s went well. We went over the list specialist by specialist.
Pulmonology: recent appointment went well. Stay on current asthma protocol
Eye dr: High eye pressure- keep monitoring
Neurogenetics; mito work up- yes our pediatrician agrees we should do this (we have our big appointment with the mito team in June)
Neurology: keep 24hr eeg for next week. Then we will go from there. For now stay on keppra. If eeg shows seizing a lot then discuss next steps
Cardiology: pediatrician agrees with pots diagnosis. He said we need to keep a cardiology for her entire life. He said this is going to be an ongoing issue and he isn’t surprised we are struggling to really find a good approach. He’s hoping he can help us and that the autonomic dysfunction dr at chop will help on the 24th.
Rheumatology: we see them Wednesday. Fingers crossed we can keep everything as is
Gi: we see our motility specialist Wednesday. Address the reoccurring sibo and how we are using the flagyl protocol and on the two weeks off we are having symptoms so might need a different approach. Pediatrician doesn’t like being on antibiotics so much but is leaving the call up to our specialist.
Psychology and psychiatry: keep up with what we are doing.
School: this was a rough subject. Addyson works so hard at school but her grades take the hit due to all her missed time at school. While the school board approved more home teaching it hasn’t started yet. It starts next week. We hope that helps but we are expecting that more may still be needed. He had a difficult conversation about it. I told him we will see how much we can catch her up between now and June but it’s hard when the appointments aren’t really going to ever lessen.