Had another apnea/seizure episode again Sunday afternoon; back in hospital 'til late yesterday. She's now outpatient again for next few days to get 4 treatments of heme and we'll see where that takes us. I was encouraged to read Mira's story in APF newsletter--seems my daughter will have to also get 4 days heme treatment once a month for a while. This up and down stuff is almost too much for a 12-yr-old--or her 51 year old mother--to bear! The once a week glucose and/or heme just wasn't enough for her. But we had to try to see what might work. She's now up to seizing for 45 mins-2 hrs! When she started 18 months ago, it was 15-45 seconds each time. What a long road it has been.
I would appreciate any input you might want to give to the APF article. I'm hoping that I can get a draft by the end of this week. Are you a member yet of APF? If so, consider also submitting your daughter's AIP story to the web site. Actually, that is where I learned so much information about this disorder. I've read every single one of the stories, and am amazed at what people have lived with--sometimes for their entire lives!!
Do you have an email that I can send you a draft when it's done?