Need some Advice~

anonymous

New member
My youngest son, who is now 10 months old, has been sick off and on for several months now (actually since September). We have been in the hosptial with him twice over a two month time frame (in Oct and Dec). The pediatrician who was in charge of his care in the beginning stated that "it is just the weather". The first time he was hospitalized was for a viral infection (that they could never figure out what it was) and the second time was for RSV (confirmed, test was performed). We have been on the nebulizer(breathing issues, such as wheezing, panting, chest congestion, etc..X-rays were fine) and--Pulmicort and Xopenex--since October and we have been back and forth to the doctors office since the hospitalizations. I got fed up last week. The doctor had him on an antibotic (Omnicef) for twenty days and another refill at the pharmacy to pick up when he is finished with that antibotic, not to mention a fever for six days. I know that cannot be good. He has not had symptoms of any other condition ear, nose, throat is clear...but he has had diarrhea for longer than a week which may had been caused by the antibotic but he has been off of it for a week and still has diarrhea. I cannot really described the stool, his always has an odor. He also has not been eating good. Well, I decided to seek another pediatrician's advice and met with them last week. She mentioned Cystic Fibrosis but could be anything, he is in the 10% for growth but still a petite thing. Well, to make a long story short, she referred us to a Pediatric Pulmonologist for testing. The Pulmonologist also stated Cystic Fibrosis or childhood ashtma, etc...So we took the following test at the hospital: Barium Swallow, lab test...IGA, IGM, IGE, and IGG and then they took blood to be sent to Utah for the Genetic mutation for cystic fibrosis--32 mutations (from reading i assume this is the genetic test). We have not received the results yet because they stated it could take up to two weeks, but what do you all think? I have no idea if my husband or I are carriers. This does not run in my family. I have a daughter who is five and a son who is three and they are both failure to thrive but other than that, perfectly healthy. I was worried because the pulmonologist did not do a sweat test just blood test, will that still give me good results? Or~do you think this is just him getting over RSV and maybe a common cold too? Or is it just the weather? So many questions, just a very concerned mother seeking answers. The pulmonologist seemed to think that there is something there which caused the RSV. Just to let you know~he also had an infection at birth that they could not determine which required him to have antibotics in the level 2 nursery. Help!!!!! One more question if someone can help, his chest congestion and wheezing does not happen every day, just every now and then. Should I be concerned or am i over reacting?
 

anonymous

New member
My youngest son, who is now 10 months old, has been sick off and on for several months now (actually since September). We have been in the hosptial with him twice over a two month time frame (in Oct and Dec). The pediatrician who was in charge of his care in the beginning stated that "it is just the weather". The first time he was hospitalized was for a viral infection (that they could never figure out what it was) and the second time was for RSV (confirmed, test was performed). We have been on the nebulizer(breathing issues, such as wheezing, panting, chest congestion, etc..X-rays were fine) and--Pulmicort and Xopenex--since October and we have been back and forth to the doctors office since the hospitalizations. I got fed up last week. The doctor had him on an antibotic (Omnicef) for twenty days and another refill at the pharmacy to pick up when he is finished with that antibotic, not to mention a fever for six days. I know that cannot be good. He has not had symptoms of any other condition ear, nose, throat is clear...but he has had diarrhea for longer than a week which may had been caused by the antibotic but he has been off of it for a week and still has diarrhea. I cannot really described the stool, his always has an odor. He also has not been eating good. Well, I decided to seek another pediatrician's advice and met with them last week. She mentioned Cystic Fibrosis but could be anything, he is in the 10% for growth but still a petite thing. Well, to make a long story short, she referred us to a Pediatric Pulmonologist for testing. The Pulmonologist also stated Cystic Fibrosis or childhood ashtma, etc...So we took the following test at the hospital: Barium Swallow, lab test...IGA, IGM, IGE, and IGG and then they took blood to be sent to Utah for the Genetic mutation for cystic fibrosis--32 mutations (from reading i assume this is the genetic test). We have not received the results yet because they stated it could take up to two weeks, but what do you all think? I have no idea if my husband or I are carriers. This does not run in my family. I have a daughter who is five and a son who is three and they are both failure to thrive but other than that, perfectly healthy. I was worried because the pulmonologist did not do a sweat test just blood test, will that still give me good results? Or~do you think this is just him getting over RSV and maybe a common cold too? Or is it just the weather? So many questions, just a very concerned mother seeking answers. The pulmonologist seemed to think that there is something there which caused the RSV. Just to let you know~he also had an infection at birth that they could not determine which required him to have antibotics in the level 2 nursery. Help!!!!! One more question if someone can help, his chest congestion and wheezing does not happen every day, just every now and then. Should I be concerned or am i over reacting?
 

debs2girls

New member
I just wrote out this long thing telling you all about it....and lost the stupid thing...so now I will paraphase.

Does your son's skin taste salty? You should get a dx from the blood work, but only if he has two common mutations as that test is not comprehensive enough to cover all the possible mutations...which is where we are with my daughter....the grey area...

I hope you get a dx one way or the other very quickly...it is not the end of the world if he does indeed have cf....good luck to you both..
Debbie
 

debs2girls

New member
I just wrote out this long thing telling you all about it....and lost the stupid thing...so now I will paraphase.

Does your son's skin taste salty? You should get a dx from the blood work, but only if he has two common mutations as that test is not comprehensive enough to cover all the possible mutations...which is where we are with my daughter....the grey area...

I hope you get a dx one way or the other very quickly...it is not the end of the world if he does indeed have cf....good luck to you both..
Debbie
 

anonymous

New member
Yes, that is the thing that bothers me...his skin does taste salty. I bathed him then I tasted his skin and to me, it still taste salty. Maybe it is because he sweats alot. You know, I am just so anxious. It is not the end of the world, but I am so worried.
 

anonymous

New member
Yes, that is the thing that bothers me...his skin does taste salty. I bathed him then I tasted his skin and to me, it still taste salty. Maybe it is because he sweats alot. You know, I am just so anxious. It is not the end of the world, but I am so worried.
 

eli

New member
I don't think you are over concerned, its normal for a mother to worry about her chn. Especially if you suspect something is wrong.
As for the blood tests, they should give a good result for CF as long as that's what their concern is(it needs to be a genetic test, not normal blood test). Those results will take about 2-3wks.

CF didn't run in my family either, but my daughter was diagnosed with it and we just had to deal with whatever came our way. My daughter doesn't have chest congestion and/or wheezing every day either. She has only had it once so far and she is 14months old.

Don't stress and just wait for the results, it might not be anything to be concerned about.

Take care and keep us posted!
Eli
 

eli

New member
I don't think you are over concerned, its normal for a mother to worry about her chn. Especially if you suspect something is wrong.
As for the blood tests, they should give a good result for CF as long as that's what their concern is(it needs to be a genetic test, not normal blood test). Those results will take about 2-3wks.

CF didn't run in my family either, but my daughter was diagnosed with it and we just had to deal with whatever came our way. My daughter doesn't have chest congestion and/or wheezing every day either. She has only had it once so far and she is 14months old.

Don't stress and just wait for the results, it might not be anything to be concerned about.

Take care and keep us posted!
Eli
 
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