Cystic Fibrosis Forum (EXP)

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    CF toddler diagnosed with Eosinophilic esophagitis

    My son is 3 years old, weighs 13 kilos and is 94 cm (about 14BMI). Since his infancy we were frustrated with his lack of appetite and knew he was not getting enough calories (about 900 calories per day). We agreed to the G-tube and he had the surgery on October 5 2009. A few days before the...
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    The Vest Frequency & Pressure for children

    Hello, My 2.5 year old son has been using the Hillrom brand Vest since September '08 at a Frequency of 12 and a Pressure of 3. His weight is 12.3 kilos (about 27.5 lbs) and height is 90 centimeters (about 3 feet). How and when did your or your child's vest frequency & pressure increase? I...
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    To: Parents of CF babies under 6 months of age

    Hello everyone! My son is 4-months old with the following mutations of CF: 1525-1G>A and W496X. I understand that this does not necessarily help with the prognosis so I have no questions to that end but would like to know the experinces of other babies with CF. He takes enzymes (Creon 5 max 10...
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    Air Travel

    Hello everyone! I thought this forum to be appropriate to ask about air travel because individuals who love to ski, surf, and more probably have to travel by air at one point or another to get to the best spots! My son is 4-months old with the following mutations of CF: 1525-1G>A and W496X. I...
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