19 June 2012 Part 1 of this topic addressed the frequency of pneumonia or lung infection episodes among individuals with MECP2 Duplication Syndrome and Part2 addressed the severity of these episodes. Part 3 discusses treatments.
Question 6 asked “ Has your child/family member ever had any of the following treatments or interventions for pneumonia or a lung infection? Please check all that apply and use the comment box to list any others. “ Information was provided by 88 respondents as shown in the graph below.
Either oral or injectable antibiotics were used in virtually all cases. A few respondents did not indicate either of these antibiotic option, but some of these indicted that antibiotics were used in responses to other questions. This may reflect that antibiotics introduced through an IV or gastric tube were not captured by this question.
Oxygen, nebulizers, and IV fluids were also frequently reported. Chest physio was also reported by 67% of respondents. Vibration and cough assist devices were reported lest frequently. French language respondents appeared less likely to report chest physio and more likely to report the use of cough assist and vibration devices.
Results indicated that 30 individuals (34.1%) were put on respirators and 9 (10.2%) had tracheostomies as part of their treatment. As seen in the chart below, most individuals required more than 10 days of antibiotic, required a second antibiotic or both.
Overall, the responses suggested that many cases of pneumonia in this population were difficult to treat.









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