Today we had AADP. We saw cardiology, neurology, rheumatology, psychology, gastroenterology and her complex care doctor.
Overall the appointments went well. Addysons stable!!!
Rheumatology did explain that Addyson being on cholocine suppresses her immune system. They have her marked as immunosuppressed. She is not to receive any live vaccines or to be around anyone who receives a live vaccine for a few days.
Immunocompromised or immunosuppressed means having a weakened immune system. Immunocompromised patients have a reduced ability to fight infections and other diseases. This may be caused by certain diseases or conditions, such as AIDS, cancer, diabetes, malnutrition, and certain genetic disorders.
Her potassium, renal function and sodium all looked good this time so the florinef and pedialyte overnight is working!!!!
Her neurologist said they are scheduling a brain mri and we will repeat overnight eeg sometime soon. We discussed her adnfle (epilepsy). She said that Addyson is the first Child to have the chrnb2 gene mixed up in the way that hers is. She said usually the whole gene is missing. Addysin has the gene but it’s out of order and she has the abnormal eeg showing frontal lobe seizures and clinical symptoms of adnfle. She said if another kid is found with the same mix up then it will be become a named gene variant. We discussed the epilepsy driving rules in md. You have to by law be seizure free for 3 months however most Neurologist want 6 months.
Gi said we are good to go for her surgical procedure on Wednesday. She does have some irregularity where she had her bowel resection a few years ago but hopefully Wednesday will show that the bowel there is ok.
Beaming with hope 