My story - from Lynn
Katie was 8 years old and had been diagnosed with asthma since 5 years old. My youngest daughter, Sara, had been very ill with asthma for her first 2 years of life. Sara spent her first Christmas in the hospital and her whole first year on a monitor. So when Katie developed asthma, I felt I had a handle on it. She responded so quickly to the albuterol inhaler that we were fooled as to how ill she was. She used her inhaler perhaps 3 times a week and up to a couple of times a day. I always told her doctor how often she was using it and we got follow-up care as we were told. We were in control, I thought. Little did I know how sick she was! Dec. 11, 1996 she stopped breathing at school and had mouth-to-mouth recuscitation for a minute and a half before recovering, the ambulance finding her oxygen level at 80%, and being taken to the hospital. They thought we had over-reacted and only kept her overnight because I said I would not take her home! The next day we went home. I made an appointment (on my own) to take her to an asthma specialist on Jan. 3 where he added another medicine and had us begin peak flow monitoring. Her primary care doctor had never mentioned this to us! Her peak flows went from 250 to 50 and up and down all over the scale!! The specialist said she must have poor technique as she would be VERY sick if she was really 50. WELL - - on Jan. 6,
I called him as she had not been doing a lot better. She had been wheezing in school and had used her nebulizer. When she went to see him, her lungs were clear, peak flow was great, and PFT's were normal. He wanted to hear her wheeze so I took her outside to run. She proceeded to come in and go into a full cardiorespiratory arrest for 7 to 8 minutes!! I have never seen anyone turn that color of blue-purple and I hope I never do again!! It was horrifying!! She spent 2 weeks at Children's Hospital in Boston. They diagnosed Sudden Onset Asthma (the name also given to Sudden Asphyxic Asthma), changed her meds, sent us home with a battery-operated nebulizer and an oxygen tank. What they didn't do is help me deal with the horror and scare. I did not know how to react to the fear every time I had to leave Katie somewhere. I was always afraid she would die when I wasn't there. I hope to meet others through this site so I can share our experiences and learn from others. I'd be happy to correspond with anyone with a similar experience. Much of the information I have found on this has been of autopsies of children who did not survive. Is there anyone out there who has also survived? Please write to me! Lynn (amkasada@hotmail.com)
