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Cystic Fibrosis Message Board


Cystic Fibrosis Board Index


There's a fair amount of stuff you have to do with a child who has CF, but it becomes routine. People with CF usually need digestive enzymes to help them digest fats and protein -- otherwise they have loose, sometimes foul smelling, greasy stools. Before each meal, we sprinkle the contents of a couple of the capsules on applesauce and then feed him. CFers also need about 1/3 more calories than normal kids -- so whole milk, we add butter and oil to his food. He can eat whatever he wants to keep his weight up.

As far as treatments -- ds is 22 months old and we've been doing manual chest physiotherapy (CPT) since he was about a week old. We do this at least 3 times a day. Before work, after work and before bed. We do a nebulizer treatment while patting/thumping him on the back, chest and sides. WHen he's a little bit older, we'll get a vest, so we can plug him in and he can do treatments while watching tv. Because ds cultured a couple of things, he also has a nebulizer antibiotic treatment twice a day, every other month. We do this after his CPT and he usually dozes or watches videos.

He takes vitamins, an antibiotic and biles salts (actigall) several times a day.

We send him to day care. He keeps us busy 'cuz he's a busy toddler and his treatments keep us busy, but we've got it down to a routine. Our most important goal is to keep his lungs healthy. Keep him healthy.

I would suggest genetic testing to identify which genes he has. Max has two copies of delta f 508 -- which is classic CF. I would also recommend going to a cf clinic or cf doctor. Someone who is familiar with treating a child with CF so you get the best possible treatment options for your child.





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