Son's continuing issues

[ziggygirlkcz]

My son is four years old.  He seems to stay sick.  It started from the night he was born.  He had breathing issues, we were told he had to much build up in his lungs and he was unable to breath.  He seems to have stayed sick ever since.  He had recurring ear infections and has had two sets of tubes.  He has had his adenoids removed.  He was tongue tied at birth and had issues with his teeth not developing fully before they cut through.  He had issues while he was on the bottle with the formula coming out of his nose.  I of course thought some of his issues were with symptoms of cleft palate.  ENT assures me there is no problem there.  Since his adenoidectomy, it seems as if his problems have worsened.  He gets very congested, runny nose, runny eyes, horrible cough, and wheezing every couple of months.  He gets a couple rounds of antibiotics and it seems to clear up.  The antibiotic is on top of pulmecort, albuterol, singulair, and nasonex that he takes regularly.  He has been tested for cystic fibrosis with sweat test results of 29 and 47.  Docs assure me that he does not have CF.  He has been diagnosed with asthma.  And now they are telling me he has reflux.  I have a hard time with this diagnosis because an antibiotic would not clear up reflux.  Antibiotics, i thought, treated infections.  I'm at a loss and have no clue where to go from here.  I am not satisfied with the diagnosis of reflux and feel the doctors are missing something.  Anybody have any similar issues?  Any help or advice would be wonderful!!!!

[5parkerfamily]

Untreated silent reflux can cause asthma like symptoms, such as coughing, wheezing, shortness of breath.  Sometimes, not always, symptoms of reflux are worse at night.  Reflux cannot be controlled by anything but reflux meds (zantac, prevecid, prilosec) and diet (foods low in acid). Have they tested him for allergies?  If they suspect reflux he needs to see a pediatric gastroenterologist.  There are several tests they can do to rule out reflux.  Which left untreated can continue to cause problems that asthma medications cannot control.  It sounds like he needs to see a pediatric pulmonologist, has he had any chest xrays?  There are other medications besides pulmicort they can try, so whoever is handling his symptoms, isn't really handling.  
So to recap:
see a ped gi to rule out reflux
see a ped allergist to rule out allegies
see a ped pulm to confirm asthma

[Margie44]

Not a doctor but have a lot of ENT issues within my family.  It sounds like your son is missing clear cut offs or walls between all the working parts.  I can understand why you think he has a cleft palette.  The only thing I can really recommend is that you pick the best hospital in the nation you can get your son to and do it.  Look for the highest recommended doctor(s) and get him there.  Don't stop with the opinions.  You'll get very frustrated because the next doctor will want to see all of the history and paperwork on your son that other doctors have documented.  If the new doctor is bad, he/she will just agree with the previous doctor.  If you find the right specialist, he/she will thoroughly evaluate your son no matter what.  Insurance may not pay to have some tests done again.  And, some doctors may recommend not doing tests redundantly so as to not overexpose your son to xrays, etc.  Just be sure to accept that this will take time and patience and a lot of hard work on your part until the right answes come about.  I'm not sure how the new healthcare reform will impact your situation.  Over-crowding in specialist offices?  Or, more experience because there are more cases to work on?
Good luck.  I'll be thinking of you both.