could this be asthma doing this

[momtofourboys]

I have a 4 year old son, who has a very lengthy history  I really don't believe that asthma is doing this to him. here is a quick history of what he has had done and what is going on..
he was born with a large VSD  at 5 weeks was on a vent. for 11 days with the RSV (the extubated on day 9, but had to re intubate. at  just over 2 months he went into heart failure. 3 just over 3 months had his heartsugery, not onlly did he have a Large VSD he had a small ASD, and a PDA which were taken caer of. he developed MRSA after the surgery. has had 2 bouts of pneumonia had RSV again at age 2  1/2 years requiruing 5 days in the hospital.
Currently he does have asthma, (take xopenex and pulmocort) he has (they say it is all small) a right bundle branch block, right vent. outflow tract obstruction, PFO, mild pulmonary stenosis, a "mild" pectus, can get tachy. and rapid breathing all of the, worse when he walks. many time he does turn blue when running. he can speak more then 3-4 words sometimes without turnong grey (these are all when he is not sick) complains of chest pain and "feeling his heart". he has had a brohncoscopy and that was clear. his cardiologist is saying it is his asthma, and the pulmonologist is saying no.
he takes a deep breath into a spiromometer and but the time his speech therapist counts 1,2,3,4 he is out of breath. (she isn't counting too slowly really fast actually) When Cree Cree gets sick we try to get him to come around with his "extra" dose of ashtma meds but the only thing that helps is the oxygen.  to me it seems like he is getting worse instead of better like they said he should. he was about 6 months old when some of these symptoms started and his Nurse had him seen by pulmonologist
I am not sure what to thikn other then the fact is I would love him to breath normal. no he doesn't pass out with these symptoms, I know when to stop him and he has learned. there was a time when he ran around his PCP office and he saw how tired he got.

Michelle

[National Jewish Health]

Yours is a most difficult task and we wish you good luck.  Your son may have asthma, but clearly asthma cannot account for all that you describe, especially his "turning blue" called cyanosis, when running.  This latter would require either a cardiac shunt from right to left or other lung disease superimposed on his asthma.

It appears that some of his problems have been resolved, in whole or part, including his congenital heart disease.

You have described wheezing.  If his pulmonologist does not believe that he has asthma, to what does he/she attribute the wheezing?  There are more than a few conditions that can mimic asthma, including large blood vessel aberrations, and these should be considered.

The complexity of his medical conditions demands great expertise of those who care for him.  It would be very reasonable for you to request second opinions at a children's or university hospital, with physicians with much experience in congenital heart and lung disease.

[momtofourboys]

he also has been tested for allergies and they came back negative. he has no cold symptoms, execpt when he is sick
michelle

[momtofourboys]

I also forgot to mention that they say he is too young for a pulmonary function test.
he doesn't cough at night or for that matter during the day time maybe once in a blue moon.
michelle