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Jan 19, 2018 Latest post:
Mar 5, 2018
Beau started not being able to eat during the evening on Monday Jan 15th. He was having trouble latching and taking a bottle. On Tuesday morning I took him to the pediatrician who examined him and saw a lot of mucus and saliva pooling in his throat. At this point Beau was still his usual smiling and cute self. The doctor assumed this was a virus and told me to keep a close watch on him for the next 24-48 hours. He continued to not eat that day so I was putting drops of milk in his mouth every hour and watching for wet diapers thinking he had a sore throat. He slept a lot Tues night which was abnormal and I noticed when he cried it was very soft and weak and he had a loud gurgle in his throat. By Wednesday morning I was very worried at how weak he was and called the pediatrician again. By the time we got to the office they took one look at him and said he had to go to the ER. Luckily their office is 2 min from Bryn Mawr hospital so rather then wait for an ambulance I drove while a nurse sat in the back of the car with Beau. He stopped breathing on the way to the hospital and the nurse ran him inside. By this point he was gray and floppy. They were able to stabilize him and get him breathing on a c-pap machine. His pediatrician came to the hospital and was the first one who suggested a diagnosis of Infant Botulism. A few hours later we were transferred to the PICU at Dupont.
At Dupont they confirmed the clinical diagnosis of Infant Botulism (the actual lab confirmation takes over a week). We had to put Beau on a ventilator that night because by this point he had paralysis over his whole body and lost the ability to swallow and gag and they wanted to protect his airway. We got approval that night for BabyBIG (botulism immune globulin) the only drug available to treat infant botulism. It was flown in over night and we administered it on Thursday at 3pm. BabyBIG is not a cure, but it stops the toxin in its tracks and will allow Beau's body to heal itself.
Every one is asking how he got this.. the spores are actually very prevalent in the soil in PA. Our doctor believes that when a baby contracts it in the winter it is likely after it snows and plows go through and disrupt some grass, mud etc.. which puts the spores in the air which babies then breathe in. We will never really know exactly when and where he contracted it though.
The typical full recovery time for an IB baby is about 6 weeks. We will be using this site to update everyone on Beau's progress.