When do the real problems begin?

Question

My child is 2 years old, has pancreatic insufficiency and no real problems with its lungs. Most days I even forget that it has CF, since the medication and physiotherapy have become a routine. At some point, though, this changes. Which age is this? Better yet, what are the stages of the evolution of CF according to the age and growth of a child with CF? I know that each child is unique, but certainly there must be a guide, this for infants, that for toddlers, this for children etc.

Answer

Dear friend,

in general, many factors play a role that influence the course of the illness of Cf in the individual persons. Those are genetic factors on the one hand: the kind of mutations sombody has influences for example the pancreatic function (if the patient will be pancreatic sufficient or insufficient) and some mutations are associated with milder or more severe lung disease in general. However, there are many epigenetic and environmental factors, that influence the course of CF and especilly the lung function, so that it is impossible, to predict the indivdual course of the illness to a child with CF, even if both mutations are known. Therefore it is of major importance to adhere to the systematic physiotherapy program and the medication in a routine way and to continue visiting the CF Center as scheduled and follow the instructions and treatment provided by the Center. By this, it is possible to keep lung function on a good level for a very long (unpredictable) timespan and if lung function and supply with pancreatic enzymes are optimized, it can be expected that the child thrives and growths normally.

Yours friendly,
Dr. Stavros Doudounakis and Dr. Daniela d'Alquen

24.11.2011