Annie's Pneumonia Scare

The last couple days of our Aicardi Syndrome Conference trip, Annie had about 4 grand mal seizures, which was partly expected since she had been off schedule with her sleep, feeds, and meds.  None of the seizures required our emergency Diastat, but they did cause her to bite her lips, tongue, and cheeks pretty badly.  Sure enough, a couple days later she developed several canker sores on her lips, tongue, and cheek--one almost the size of a dime!  Whenever she even has just one canker she starts drooling profusely, but that would be an understatement to describe the amount of drool Annie started producing this last week.  We continually kept a trough bib on her with a rag in the pouch, and a cloth bib on top of that to prevent the drool from running under the vinyl pouch bib.  We had to change the cloth bib about every 5-10 minutes when it would become fully saturated--to the point that it would drip across the floor when we took it off her to put in the laundry room.  We also had to dump out the bib pouch in the sink several times a day and replace the rag in the pouch.  I also used our suction machine on her about every 1-2 hours to help clear the fluid, and she could only tolerate lying and sleeping on her side to avoid choking and gagging on her pooling secretions.

All of that really is just a minor inconvenience, but the real issues were the pain she experienced the first several days with her cankers and the weakened cough she developed considering her high risk of aspiration pneumonia.  If she (or we) accidentally bumped her cheek or lip or one of her cankers, it would startle her so badly that it would put her into a seizure and she would cry inconsolably from the pain.  Most kids could use ora-gel or zylocane to numb cankers, but because of Annie's weak swallow and risk of aspiration, we can't use any numbing agents in her mouth.  We also couldn't give her any of our hard-core pain killers like Lortab because of the heavy sedation it causes--she wouldn't be able to tolerate all her secretions if she was so heavily sedated, thus increasing her risk of aspiration pneumonia.

After a few days the pain (and the related seizures) began to go away.  But Annie was still drooling profusely, but started having more difficulty tolerating all the secretions.  Her normally strong cough weakened dramatically and became very unproductive, and she started having pain with each cough.  I began using the suction machine more frequently to clear her throat of secretions and phlegm and grew more and more worried that she had or was going to aspirate and get pneumonia.  After battling all this for about a week, she woke up with a fever and I finally decided to take her to the doctor.  He said her lungs sounded rather clear, but he could hear a lot of reflected noise from the congestion in her throat that she is unable to clear.  He said she didn't have pneumonia, but thought she might develop it very quickly, so he put her on 2 powerful antibiotics. 

I know that sounds like overkill or paranoia to treat something that she supposedly doesn't have, but the number one cause of death in children with Aicardi Syndrome is pneumonia.  Once Annie develops pneumonia, she could go downhill very quickly.  So to be safe, we picked up the antibiotics the next morning.  However, Annie turned a corner in the night and actually woke up vocalizing instead of coughing.  Later that day her cough became productive and she was able to start clearing her own secretions.  It was amazing to see her turn around so quickly.  Because of the terrible side effects of these powerful antibiotics, we decided to put them on hold to see if she'd make a full recovery on her own.  She is continuing to do well now and just recently started only needing a few cloth bibs each day.  I am SO grateful that she has recovered and is getting back to her normal self.  This has been quite the scare this week since Annie has always had such a strong cough which has prevented her from ever getting pneumonia.  So to see that strong cough disappear and to hear her almost drowning in her own phlegm and secretions and to be so close to possibly getting aspiration pneumonia was rather scary.  We are so blessed that she was able to avoid serious illness. Oh how we love our sweet Annie!