Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Hypoxia/muscle weakness/seizure actvity

MamaGould Message
6 Mar 2009, 05:06 PM

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?
lyndawillis Message
8 Mar 2009, 01:11 AM

Ditto on the neurologist and on the oxygen during the seizure. We are very fortunate in that we have a team of doctors including her neurologist and hematologist that have treated prophyria before. So it has become a lot easier. I don't even ask aboiut the oxygen anymore; I just put it on her even though her sat levels say she is fine. My daughter is getting heme every week to see if we can get her stabilized. She starts with abdominal pain, her abdomine gets the color of ripe plums (I know AIP is not supposed to have skin involvement but her's to quote her hematologist obviously did not read the textbook), the she will start having seizures. Her seizures last from 30 seconds to two minutes and are focal or temporal lobe. She takes Pamalor which has helped. Be very careful with the Ativan; it made my daughter worse after the first time they gave it to her. My daughter also sweats the porphyrins; bright purple red. The article is a great idea. If you want to collaborate or discuss, I would be happy to send Mira at the APF my contact information,
lyndawillis Message
11 Mar 2009, 02:25 PM

We are back in the hospital as well. Major episode yesterday. Weekly is not working here either so will talk to Dr. about your approach. Will anyboy ever run an efficient emergency department? My email is Will try to remember to join APF today. It keeps getting lost in everything else.