I have been researching information on CF and was wondering if it's possible to have the disease without the normally associated GI problems. My 19 mo old nephew has been sickly from almost the day he was born with recurring ear and bronchial infections, RSV, and pneumonia. Although he doesn't seem to cough up mucus, his chest is almost always congested and he breathes with a wheeze/rumble sound and vibration. His pediatrician has had him on almost constant antibiotics and nebulizing steroid treatments with only short term improvement. Although CF doesn't run in our family, I think it should be looked into. The pedi has poo-poo'd an inquiry saying Cole would have GI problems and diahrea (CFF says stools are usually "bulky") if he had CF. They are now trying to get my nephew well enough to put tubes in his ears and his pedi thinks this will cure all. The problem is that when they get him well enough via antibiotics and steroids, then they can't seem to schedule him in for 1-2 weeks. By then he has regressed back to his congestive pulmonary condition and they won't do the surgery. What's the relationship between his ears and his lungs? Your archives mention bronchiectasis. Is this common in kids without CF? Or, as the pedi has also suggested, could this be the beginnings of childhood "asthma" (doesn't run in our family but both parents have allergies)? I think my sister needs to press her pedi regarding the whole pulmonary and/or CF problem (and get a pedi who'll be a true advocate for Cole's health). Am I an overbearing aunt or does my sister need a kick in the butt?
Cystic fibrosis (CF) is a genetic disease of the exocrine glands affecting the gastrointestinal and respiratory systems. It is possible to have CF without having gastrointestinal (GI) problems. A child may have CF even though it
I certainly don't think you are being overbearing. I have limited experience with CF as I work with adults. I teach critical care for adults as well, so my neonate/pediatric experience is little. What I do know is that I agree with you in that I don't think it is out of the question to have your nephew tested for CF. I am guessing that your sister is a little more passive then you are? I, too, am aggressive when it comes to quality care and taking care of loved ones. Maybe you should seek out another physician who will be more kin to your suggestions or testing requests.
As for your question about bronchiectasis. I would be hesitant to think that this would be the issue. Generally, bronchiectasis may be something we would see in patients with a history of CF, or chronic lung disease, someone older than 19 months. There are also GI issues that you had mentioned. It doesn't sound as if your nephew is presenting with those specific to CF, although increased frequency is one of those manifestations. The recurrent pneumonias is a "red flag" but again, your poor little nephew may just be a sickly baby! A sweat test is the current standard in CF testing to define if one has CF, that I am aware of. The Nat'l Jewish Center nurse that hosts this forum will certainly have much more info on this as well as CF in general. I am sorry to hear of your nephews short but troubling history. I certainly wish him well. Good luck and keep us posted if you wish.
I agree with you that there are mild SYMPTOMS of CF and these progressive complications associated with CF will vary widely from patient to patient. Playing devil's advocate, I would be hesitant to call CF mild in any form. Recent progress in CF research is making a big difference in the lives of those who suffer this disease. The nurse that hosts this forum, I'm sure, is an excellent resource to acknowledge such advancements and improvements in care. I look forward to hearing more about the above individual as well. Take care...
I agree with the others. You're doing the right thing in pushing your sister to get better answers and help for the baby.
Call the LUNG LINE nurse, at 1-800-222-LUNG(5864) between 8am & 4:30pm, Colorado time, Mon-Fri, to get names of good docs in your area, who trained at Nat'l Jewish.
Such doctors may include pediatric pulmonlogists (lung docs), allergists (could refer you to pulmo's, etc.), pediatric gastro-enterologists (in case the baby has Pediatric GERD, alone, or in addition to other problems), etc.
Where are you, and what's your email? Perhaps people could recommend docs they know are good, in your area.
Also, ask a LUNG LINE nurse if she can recommend a good doc in the North Dallas area to you. Call the LUNG LINE at 1-800-222-LUNG(5864), and then press "5" to speak with a lung line nurse. Call Friday, between 8am & 4:30pm Colorado time.
Ask the LUNG LINE nurse for advice, too!
Sincerely, Concerned lady
ALTHOUGH YOU MAY NOT SEE CF IN YOUR FAMILY, CF IS A RECESSIVE TRAIT AND COULD BE PASSED ON FROM GENERATION TO GENERATION WITHOU SHOWING ITSELF. IT IS MORE COMMON IN CAUCASIANS. THE PROBLEM WITH CF IS THAT THE LUNG SECRETE TONS OF MUCUS, AND PATIENT BECOME HOSPITALIZED FOR IT MANY TIMES A YEAR FOR INFECTIONS.
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