My son Eric age 13 (will be 14 May 4) has been definant about taking his medicne for the last year but the last few months have been crazy. His last appt to the cf doctor was Sept 13. We go back to the dr on Dec 13. A little bit background may help. He was diagnosed at age 9 almost 10. He has been hospitalized 4 times since then. He has been diagnosed twice with pseudomonas and once with msra.He was listed as failure to thrive this time last year. We had a feeding tube put in place in Jan. He has(had) gained 16 lbs last visit. The docotrs were bragging on him for his weight gain. They told him his functions were down a little from a few missed treatment but if he stayed on top of them he could get them back up. Three weeks after being home he has given us even a really hard time. For the last month we can't get him to do his night time feedings, refuses to take his medicines, and refuses to take his breathing treatments. For two weeks we fought about it consistentaly with no change. I am tired of fighting. I have two other children and I was staying stressed. I hate to say it I just give up on fighting with him. He now does nothing. He should have completed his tobi two and half weeks ago. I by no means have giving up on him (even thought right now I feel like a failure). I am dreading what the doctors are going to say. I know he is not going to gain weight like he should be and his pfts are going to be down. I guess this is really just a way for me to vent. The doctors have told him what is going to happen and seem as though he doesn't care. I feel so lost and confused about cf. We live in a small city and no one around here has or knows anything about cf. I am glad I can atleast have a place to vent. We have offered rewards and everything with no avail. I am not sure what to do. I just hope that things change soon for his health and my sainty.
Thanks for letting me vent.
Thanks for letting me vent.