Does this sound like CF

[WorriedParent]

My son is almost three years old. He has had about 4-5 bouts with sinus/colds/bronchitis/other a year. Usually the Dr gives him steriods or antibiotics + nebulizor and it clears within a week. The Dr. became concerned because of his wheezing, this is the third time this year he has had wheezing. Generally everytime he gets sick he has a bout of wheezing. When he was a year old he had RSV, which we always have attributed the wheezing to. The Dr. sent us to a lung specialist at the Childrens Hospital today because of the frequency. The lung Dr said that it was probably acid reflux, but wants to do a sweat test to rule out CF. My son is also very low on the growth charts (5%), but my wifes family is very petite. He doesnt present with any other symptoms (no irregular stools,no salty skin, etc). I know it is very difficult to diagnose based on symptoms alone, but I wanted to get a feel for if this sounds like something more serious then the Dr made it seem. I should also add that when he does get sick he doesnt have frequent coughing. The two times he had bronchitis he had frequent coughing, but outside of those two episodes its generally just the wheezing.

Any thoughts are greatly appreciated!

 

[WorriedParent]

My son is almost three years old. He has had about 4-5 bouts with sinus/colds/bronchitis/other a year. Usually the Dr gives him steriods or antibiotics + nebulizor and it clears within a week. The Dr. became concerned because of his wheezing, this is the third time this year he has had wheezing. Generally everytime he gets sick he has a bout of wheezing. When he was a year old he had RSV, which we always have attributed the wheezing to. The Dr. sent us to a lung specialist at the Childrens Hospital today because of the frequency. The lung Dr said that it was probably acid reflux, but wants to do a sweat test to rule out CF. My son is also very low on the growth charts (5%), but my wifes family is very petite. He doesnt present with any other symptoms (no irregular stools,no salty skin, etc). I know it is very difficult to diagnose based on symptoms alone, but I wanted to get a feel for if this sounds like something more serious then the Dr made it seem. I should also add that when he does get sick he doesnt have frequent coughing. The two times he had bronchitis he had frequent coughing, but outside of those two episodes its generally just the wheezing.

Any thoughts are greatly appreciated!

 

[Julie7]

I always think more information is better. Though I would disagree that a sweat test rules out CF. there are plenty of people on these boards who had normal sweat tests but in fact have CF. not trying to be an alarmist but you can also request full genetic sequencing. If you search this site for genetics, you will find lots of helpful info. While full genetic sequencing also cannot definitely rule out CF either, I would feel more confident as a parent that my child did not have CF with no findings on genetics vs normal sweat test. With 4+ bouts of lung issues per year, hopefully you have a good Pulmonologist. And surely others will ask if your hospital is CF accredited. If so, look up their scores to ensure they know what they are doing. For ex) some CF centers see about 100 patients vs 500. The hospital that sees 500+ has much better scores and ability to recognize CF or atypical CF.
Wish you the best.

 

[Julie7]

I always think more information is better. Though I would disagree that a sweat test rules out CF. there are plenty of people on these boards who had normal sweat tests but in fact have CF. not trying to be an alarmist but you can also request full genetic sequencing. If you search this site for genetics, you will find lots of helpful info. While full genetic sequencing also cannot definitely rule out CF either, I would feel more confident as a parent that my child did not have CF with no findings on genetics vs normal sweat test. With 4+ bouts of lung issues per year, hopefully you have a good Pulmonologist. And surely others will ask if your hospital is CF accredited. If so, look up their scores to ensure they know what they are doing. For ex) some CF centers see about 100 patients vs 500. The hospital that sees 500+ has much better scores and ability to recognize CF or atypical CF.
Wish you the best.

 

[WorriedParent]

Thank you for your quick response. Is there a way to check their scores online? They are CF accredited, and just from general reviews they are one of the better children hospitals in the area. This is our first time with a well visit to the Pulmonologist. The last time we were there was when they diagnosed him with RSV after the local hospital said it was pneumonia. Overall we have been very happy with the level of care, but of course the more specialized the better! I know we won't know for sure until we have the right test done, but of course I wont sleep much between now and then... I am also curious about his lack of coughing, have others been diagnosed without really showing a persistent cough?

 

[WorriedParent]

Thank you for your quick response. Is there a way to check their scores online? They are CF accredited, and just from general reviews they are one of the better children hospitals in the area. This is our first time with a well visit to the Pulmonologist. The last time we were there was when they diagnosed him with RSV after the local hospital said it was pneumonia. Overall we have been very happy with the level of care, but of course the more specialized the better! I know we won't know for sure until we have the right test done, but of course I wont sleep much between now and then... I am also curious about his lack of coughing, have others been diagnosed without really showing a persistent cough?

 

[Aboveallislove]

From everything you told said, I think they are just checking CF out to make sure they don't miss something but not that they think it is really that. My best friend's sister's kid had more bouts than you described, pneomnia, weight loss, etc. and doctor wanted to do sweat test. I was freaking out for her, but doctor told her he doubted it just wanted to make sure it wasn't CF. It wasn't. They got the annoids (sp?) out and no problem. . . . so while it could be CF (and if it is, WRITE BACK and we'll help you in the early days get a handle on things), I think that it is probably unlikely. Re the CF Centers, go here: http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
You can set up an account and then check out the Centers. but I think for now any place for sweat test that is accrediated CF center will do it and then most likely you won't have to deal with it again!! Praying for you all tonight as you worry and stress and for a good answer!

 

[Aboveallislove]

From everything you told said, I think they are just checking CF out to make sure they don't miss something but not that they think it is really that. My best friend's sister's kid had more bouts than you described, pneomnia, weight loss, etc. and doctor wanted to do sweat test. I was freaking out for her, but doctor told her he doubted it just wanted to make sure it wasn't CF. It wasn't. They got the annoids (sp?) out and no problem. . . . so while it could be CF (and if it is, WRITE BACK and we'll help you in the early days get a handle on things), I think that it is probably unlikely. Re the CF Centers, go here: http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
You can set up an account and then check out the Centers. but I think for now any place for sweat test that is accrediated CF center will do it and then most likely you won't have to deal with it again!! Praying for you all tonight as you worry and stress and for a good answer!

 

[WorriedParent]

Thank you for your response and prayers, they are really appreciated. I know that I tend to worry, especially when it comes to him, but from reading this community I know if it is this will be the first place I turn. Regardless I will be back with results and updates! I was doing some research on our hospital and it is ranked #1 in Pulmonary care for children in the area, which helps to know we are in good hands.

 

[WorriedParent]

Thank you for your response and prayers, they are really appreciated. I know that I tend to worry, especially when it comes to him, but from reading this community I know if it is this will be the first place I turn. Regardless I will be back with results and updates! I was doing some research on our hospital and it is ranked #1 in Pulmonary care for children in the area, which helps to know we are in good hands.

 

[Aboveallislove]

My son (who is about your son's age--just about 3) and I just finished prayers and he smiled and nodded agreement while we prayed for your son and you. The worry is horrible, but I truly think it is just them being careful. Hang in there and looking forward to an update.

 

[Aboveallislove]

My son (who is about your son's age--just about 3) and I just finished prayers and he smiled and nodded agreement while we prayed for your son and you. The worry is horrible, but I truly think it is just them being careful. Hang in there and looking forward to an update.

 

[Printer]

It is one thing for the hospital to be accredited, it is another thing for the Doctor that you see there to necessarly understand CF. Ask to see a CF SPECIALIST.

Bill

 

[Printer]

It is one thing for the hospital to be accredited, it is another thing for the Doctor that you see there to necessarly understand CF. Ask to see a CF SPECIALIST.

Bill

 

[Ratatosk]

DS' symptoms are mainly digestive. People wcf are born with normal lungs; however, it's a progressive disease and due to the extra thick mucus, infections, eventually the lungs will be affected.

He was diagnosed at about 7 days old via genetic blood testing, which tested for the most common mutations after the doctor in the NICU suspected CF due to a bowel obstruction caused by meconium illeus. A sweat test was done at 3 weeks, which was a normal 32.

A friend of mine's daughter with the same exact mutations, wasn't diagnosed until almost age 2. She had rsv, bronchiolitis a few times, failure to thrive but instead of very loose, malabsorbed stools -- she had constipation issues. Her mother was quite tiny, so the doctors weren't all that concerned with the FTT; however, their pediatrician decided to test for CF just to rule it out.

I would push for genetic testing, see a CF Specialist because even if it isn't CF, your child does have some health issues which should be addressed.

 

[Ratatosk]

DS' symptoms are mainly digestive. People wcf are born with normal lungs; however, it's a progressive disease and due to the extra thick mucus, infections, eventually the lungs will be affected.

He was diagnosed at about 7 days old via genetic blood testing, which tested for the most common mutations after the doctor in the NICU suspected CF due to a bowel obstruction caused by meconium illeus. A sweat test was done at 3 weeks, which was a normal 32.

A friend of mine's daughter with the same exact mutations, wasn't diagnosed until almost age 2. She had rsv, bronchiolitis a few times, failure to thrive but instead of very loose, malabsorbed stools -- she had constipation issues. Her mother was quite tiny, so the doctors weren't all that concerned with the FTT; however, their pediatrician decided to test for CF just to rule it out.

I would push for genetic testing, see a CF Specialist because even if it isn't CF, your child does have some health issues which should be addressed.

 

[Aidensmom]

While everyone is on the topic, I also have a child that is having some strange symptoms. So my son is 6 months old today, he was a perfectly healthy newborn. At 4 weeks old he starting having apnea spells and started catching one lower respiratory infection after the next! He was in the ICU a week with apnea spells, 3 weeks with RSV, 3 more times for a week at a time for wheezing and low oxygen levels. He has been on 4 rounds of prednisone, an albuterol inhaler, flovent inhaler and albuterol nebulizer since 6 weeks old. He also has acid reflux, an enlarged kidney, constipation regularly, and sweats horribly! He has had a lot of tests done that were negative, seen a lot of drs that just cant figure out whats wrong. The other day we were out of town and I had to take him to an emergency room because his breathing got so bad the inhaler wasn't working. The dr there suggested CF testing so they set it up for monday. I am just curious what everyone thinks of this? I am determined to find out whats wrong with my son, It's been a long 6 months with no answers and now I'm a nervous wreck! <img src="i/expressions/face-icon-small-sad.gif" border="0"> If anyone has ever heard of this or has any suggestions as to what this may be, please help! I'm desperate! Thank you