Please Help-Frustrated Mother of young boy

[bens_mom]

HI, my son (4 years old)  has been coughing for a very long time with no answers from his doctors.  His first xray in November of 2007 showed Atalectasis.  Docs sent him home saying he had Croup and that atalectasis would clear up.  Still coughing all these months, new pediatrician was diagnosed with Asthma in December. His asthma is also exercise induced. Saw pulmonologist and gave him Flow Vent and Albuterol inhalers , along with Decadron when the flare ups occurred and Croup.  Saw another new doctor because son was not getting better.  Same peds office new doctor but was really ill...lots of phlegm etc, she gave him a Zpak + nebulizer with Albuterol solution.  We did that nothing changed.  Sent him for second xray, which showed atalectasis and pneumonia altho the report didnt say any pneumonia, just atalectasis.  Treated him with 10 days Augmentin and Pedia Pred.  Cough cleared up, No sickness either.  6 days after antibiotics , breathing tx's and pedia pred finished, cough returns with fever.  Had chest CT and doc says Atalectasis caused by Asthma.  (I dont have this report in hand but will have exact report then).  Could this be RMLS?  Oh also this doctor while she was treating my son with this last treatement also thinks my son has PRADER WILLI syndrome.  My son is 87lbs and 4 feet tall...but he is only 4 years old.  He was born a preemie by c-section.  He was 36 weeks when he was born.  Anyway I asked what that was and she told me to Google it that her partner came up with it.  I am dealing with not so very good health care where I live and am probably going to head to Seattle for the Childrens' hospital there if I can find a decent pulmonologist.  I am N. West Montana.  I do however also have family in Chicago and can travel there as well if anyone knows of a children's pulmonologist there.  My issues are I am not getting anything in concrete here. I am getting partial diagnosis of asthma,  If my child has asthma, why wasnt he returned to the original meds of Flow Vent medications after the  pneumonia cleared?  He was taking Flow Vent 2 x a day and Albuterol inhaler 4x a day during a flare up. The kicker in all this is it all started in July of 2007 after a bout of Croup.  He recovered from that but after that every time he got a cold he would cough till he vomited.  And in November he was never able to recover from it.  He literally coughed from November till March.  Everytime the coughs would get bad is when he would vomit.  He actually figured out a way to cough without it hurting him so much.  He was given Tylenol w/codeine to stop the spasming on several occasions.  I am so frustrated.  I am in the process of searching for a pulmonologist.  IF anyone can shed any kind of light on this subject I would be so grateful.  I feel I have been shuffled around with no one really knowing what is going on with my son and I hope that we dont have any kind of permanent damage being mis diagnosed with any of this.  If anyone would like further info because you might have an answer for me please email me at ***@****.  PLEASE HELP THIS FRUSTRATED MOM IN GETTING SOME ANSWERS.

[bens_mom]

Thanks Sunny.  Its another long night tonite.  Poor little guy is coughing horribly while he is sleeping.  Nothing is helping him.  NOTHING.  I am waiting to give him another breathing TX in 2.5 hours.  I am in the process of looking for a doctor at Seattle Childrens right now.  I have friends out there that I can stay with.  I will let them re-xray him, test him for allergies if need be , do another CT , what ever it takes.  WE have DOUBLE COVERAGE on our son so get him care isnt the problem, its good care I am looking for.

[Sunny602]

Wow, your son is a big boy! Does he have other symptoms of prader willi such as low muscle tone, hunger, etc? If I am not mistaken, Prader Willi kids have problems with feeding when they are infants, even have a tough time gaining weight until they get into toddlerhood then the weight takes off...your son has laryngomalacia maybe this is associated with that. He could easily have reflux which would explain his asthma symptoms too...
I agree that you need to find a good doctor that will look at the whole picture..sometimes they have tunnel vision and don't look beyond the borders. I will keep you in my thoughts...Sunny

[bens_mom]

No he hasnt complained of that at all.  When he was an infant we had him on Zantac for his first year and half due to reflux.  My son also has Laryngomalacia...which is floppy epiglottis and for almost his first year of life he had Stridor.  Would any of that have anything to do with this?  I am afraid they are not looking at the entire picture.  My son's entire chart.  We moved to a new state before he turned 1, then I have switched 2 peds.  Its crazy.  He is coughing his little heart out right now and there is nothing I can do for him I am so angry.  

I also live on a well which we have a lot of iron in.  I have bottled drinking water here so he doesnt drink the well stuff.  We have a water cooler with bottled water on top.  I will get a copy of the CT report tomorrow AM and will post with more info as I get it.  I am sorry for my earlier post. Its a mess...

[envirocauses]

Does he ever complain of something being stuck in his throat ...like something is in it?  The chronic cough and be from GERD/reflux.  Children can vomit after they cough so much from it and I had a similiar situation.  We were on well water with contaminents and that is possible the cause for the GERD at the young age.  They had an endoscopy to see this after other things ruled out.