Adolescence

Question

Dear experts,
our son suffers from CF, a benign course, is of normal height and weight. Since he has been 14 years old, he slighted his therapy more and more, in the meantime he is 21 years old and is fortunately still quite fit, FEV1 about 80%, in spite of zero therapy and zero sports. Even so he visits his routine investigations (he takes enzymes, vitamins only sporadically). Can we hope that this runs still under "delayed puberty"? We are asking ouselves if this would change ever....

Answer

Dear questioner,
for sure you are not alone with your worries about a chronic ill child, for whom regular therapy seems to be a foreign word at the moment.
Frequently parents of pubertating children report worriedly that their children are interested in all other things, but not in the duties at home, in school or especially not in the therapy.
For sure you have made an effort for years to keep up the recommended therapy and with that accepted personal restrictions? And since the beginning of puberty your son has suddenly the "I don't want to"- phase and wants to decide himself about his own body. Wants to decide himself, if, when and how much therapy he wants to do.
Actually a phase of life and a process of development which is experienced by everybody when he becomes an adult. A real normal trial of separation of your son if there were not the justified fear, that by neglection of the therapy a worsening of the health state could happen.
You as parents are in a dilemma. On the one hand an adult person has to have his personal responsibility, his independence, on the other hand it is probably not easy to stand if you have to watch passively how your son neglects his therapy.
What can you as parents do about the therpeutical fatigue of your in the meanwhile adult son?
Probably you tell your son that you are worried about his health state and that you think his condition might worsen due to the neglected therapy.
Often it is recommendable, to ask the doctor in charge for his help. A long-term therapy for the daily routine is hard to maintain if based solely on following instructions ("take your tablets", "inhale now"). If it has not happend yet, your son should be involved actively in the planning of the therapy by the doctor, that means that he should be advised in such a way, that he also can make his own therapuetical decisions and like that probably his whish to decide more himself can be followed better. By this his interests should not stay disregarded, in the first row his medical situation has to be taken into account for sure. What about the knowledge of your son concerning his illness? Probably one has to act here? Explain if necessary again in detail, why which therapeutical measures are necessary. Knowledge that you as parents acquired over years, is probably not present in such an extent in your son.
Often we recommend, to discuss a personal therapeutical plan with the patient, which they are then willing to follow (backup resp. inclusion of doctors in charge) and talk also about possible consequences in case of not-following the plan (e.g. necessary antibiotic therapy, clinical admission in case of worsening). If that will have the desired effect on your son, I cannot tell you. Due to the few information you gave, my advice can only be of a general nature. A lot of questions arise to me, e.g.: does your son have a profession? What about the compatibility of profession and therapy there? How does it influence each other? Does he still live at home? What are his plans for the future?
As you realize, there are many possible answers to many questions. But in order to make it meaningfully, it would probably be advisable, to get in contact to us or the possiblities of advice near your home (e.g. CF-center), in order to be able to give you more targeted advice. You find us in the internet under www.muko.info (Germany).
I whish you much force in the companionship of your son in this difficult but rather also normal phase. Probably the confidence in him is worth it?!
Yours Nathalie Pichler
Mukoviszidose e.V.

02.02.2011