Hi I'm new here but really need some advice/opinions about my son. A little background.....I have 3 children a 5.5 yr. old son, 2 yr. old daughter and 7 mo. old son with no known family history of CF. Okay so my 7 month old son, Davis, has had respiratory issues since 2 months of age. He was born in August and started having problems the first of November and was started on albuterol nebulizer treatments PRN and towards the end of the month Pulmicort treatments BID neither of which helped at that time. Since then it's been a continuous cycle of congestion, cough, wheezing, stridor, and respiratory distress. He has been hospitalized twice once in December for 11 days and once in March for 5. The first admitting diagnosis was "pneumonia" though most all the Dr's said it looked like an atypical pneumonia. He was deep suctioned several times every day had round the clock breathing treatments was put on O2 at one time due to a drop in O2 sats and had several different tests done including a CT of the chest, a swallow study, an Upper GI barium study, Xrays, 2 sweat tests (both with insufficient sweat). And after all that was D/C home in not a whole lot better condition than when admitted he just wasn't really responding to too much other than the deep suctioning. I mean some times the breathing treatments would seem to help but not as well as they probably should. Anyway they took him off all scheduled breathing treatments and were just told to give them to him PRN. After that things seemed to get better for a few weeks the symptoms weren't totally gone but were much better. He saw the pulmonogist and he has us do an echocardiogram b/c apparently an xray showed him having a "prominent pulomonary artery" and he wanted to rule out a few things and it came back okay basically and he also had a 3rd sweat test which was also insufficient. The pulmonologist basically said we are trying to rule out things and at this point it could be CF, RAD (asthma) or just benign wheezing of infancy. He had us continue with the PRN nebs and didn't really change anything. All was about the same except for occasional trips to his Pedi where he was put on oral steroids for wheezing and his skin issues (he has BAD eczema). About a month ago he was restarted on Pulmicort BID with Xopenex PRN and also started on Singulair once a day. Those seemed to be working pretty good but then he got worse again and was hospitalized at the beginning of March b/c of respiratory distress all the same symptoms: wheezing, retracting, tachypnea, dehydration, congestion etc. but this time he was diagnosed with metapneumovirus from the virus panels they ran. He was released after 5 days had a 4th sweat test done still insufficient and they FINALLY did a genetic screen which ended up coming back normal. He's been pretty good since then up until this week when he got an ear infection and is now starting to get congested worse and is coughing more.
He's due to see his pulmonogist again on Friday the 10th and is scheduled for yet another sweat test =(. The dr. basically said they would continue doing the sweat test until they get a result. I'm about dying in this limbo with no real answers. I feel like I'm in some Dr office or hospital every week. Both me and my husband work but he's not in daycare, my MIL watches him and I'm a nurse...I actually work for his pediatrician. And like I said earlier he rarely goes a day without having a little episode of congestion or wheezing, he has really bad eczema, and horrible smelling stools. He's currently on Similac Alimentum which I know will make stools alot smellier but until December he was breastfeed and still had stinky poos. His stools are mostly always like a dark green color and loose but he's had an occasional more formed yellow grayish stool and he normally has 3 BMs a day....somedays more somedays maybe 2.
I know that's a LONG read but I'm stressing out SO much. My oldest 2 haven't had problems like this at all. My oldest had a 2-3 week stint on nebs at around 9 months of age and has a fairly chronic cough I think due to allergies but that's it. This is all new, foreign territory for us. There's no family history of CF that we know of and no major problems with asthma. Just a big history of food and environmental allergies. Basically I'm just wondering if I'm being too paranoid and nitpicking everything or if this sounds like it could very well be CF. From what I've read and what the Dr in the hospital said the genetic testing can miss alot so just b/c it came back normal doesn't rule it out completely? And what are your opinions about the repeat sweat tests? This boy just DOES NOT sweat....it's insane!! We wrap him up like an eskimo in the dead of winter and still nothing. Any tips to maybe help him sweat more? Any advice/opinions are more than appreciated! Thanks for reading all that jumbled mess....I hope it all made sense.
He's due to see his pulmonogist again on Friday the 10th and is scheduled for yet another sweat test =(. The dr. basically said they would continue doing the sweat test until they get a result. I'm about dying in this limbo with no real answers. I feel like I'm in some Dr office or hospital every week. Both me and my husband work but he's not in daycare, my MIL watches him and I'm a nurse...I actually work for his pediatrician. And like I said earlier he rarely goes a day without having a little episode of congestion or wheezing, he has really bad eczema, and horrible smelling stools. He's currently on Similac Alimentum which I know will make stools alot smellier but until December he was breastfeed and still had stinky poos. His stools are mostly always like a dark green color and loose but he's had an occasional more formed yellow grayish stool and he normally has 3 BMs a day....somedays more somedays maybe 2.
I know that's a LONG read but I'm stressing out SO much. My oldest 2 haven't had problems like this at all. My oldest had a 2-3 week stint on nebs at around 9 months of age and has a fairly chronic cough I think due to allergies but that's it. This is all new, foreign territory for us. There's no family history of CF that we know of and no major problems with asthma. Just a big history of food and environmental allergies. Basically I'm just wondering if I'm being too paranoid and nitpicking everything or if this sounds like it could very well be CF. From what I've read and what the Dr in the hospital said the genetic testing can miss alot so just b/c it came back normal doesn't rule it out completely? And what are your opinions about the repeat sweat tests? This boy just DOES NOT sweat....it's insane!! We wrap him up like an eskimo in the dead of winter and still nothing. Any tips to maybe help him sweat more? Any advice/opinions are more than appreciated! Thanks for reading all that jumbled mess....I hope it all made sense.