<SPAN class=postbody>Hi there, My daughter hasn't been diagnosed with CF so I hope you don't mind me posting here. I am very concerned that she is a sufferer of CF despite having a negative heel prick test. I will tell you a little history on her... She was born a healthy 8lb 10oz and thrived on breastmilk for the first 3 months - staying around the 50th - 75th percentile. By 16 weeks, she had dropped to the 25th and that decline has continued with her now being only about the 4th. She is 15 months old and weighs 17lb 2oz. She caught her first cold when she was 3 weeks old but has an older brother who had just started nursery at the time, so we expected her to pick up various germs. At 9 weeks old, she was hospitalised with bronchiolitis (negative RSV test) following a 2 day stay in hospital with me and her brother after he contracted severe croup, so I put it down to her picking up some nasty germs in the hospital (she was being breastfed so had to stay with us). 10 days after the bronichiolitis, she developed a chest infection and had her first course of antibiotics. At 6 months old, she once again contracted bronichiolitis and we ended up in hospital for 4 days with severe breathing difficulties. She had two bugs growing on her culture, was positive for RSV this time and was put on antibiotics, steroids and hourly nebulizer before switching to salbutamol inhaler. Ever since then, she has had an infection every 4 weeks. She was referred to hospital for her poor weight gain and although the Paediatrician wasn't concerned about her size (her brother started off life on the 50% percentile and steadily dropped to around the 9th), she did request to see her again in 3 months to monitor her chest and consider putting her on a becotide inhaler to try to prevent the frequency of these infections. After a bad infection last month, she was put on becotide a month before her appointment back at the hospital (which is tomorrow). Last week, she developed another horrendous infection requiring antibiotics and steroids as well as her inhaler. She finished her antibiotics yesterday and today, is crackly and wheezy again. We have been to the out of hours doctors and they haven't prescribed anything yet as they want the hospital to hear how she sounds when she is in the midst of an infection. From your experience with CF, am I right to be concerned or is this just asthma? I am going to request a sweat test tomorrow as I cannot get the thought out of my mind. This many infections is not normal in my eyes. Whilst I had childhood asthma, I did not suffer in this way. I know RSV can leave the lungs susceptible for up to 2 year afterwards (according to the Paediatrician at our first appointment) but this every month without fail is just ridiculous and I hate seeing my little girl so unwell all the time. I would be very grateful of any thoughts or advice you might have. Thanks</SPAN>
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Recurrent chest infections and poor weight gain in 1 yr old
- Thread starter donnaw27
- Start date
<SPAN class=postbody>Hi there, My daughter hasn't been diagnosed with CF so I hope you don't mind me posting here. I am very concerned that she is a sufferer of CF despite having a negative heel prick test. I will tell you a little history on her... She was born a healthy 8lb 10oz and thrived on breastmilk for the first 3 months - staying around the 50th - 75th percentile. By 16 weeks, she had dropped to the 25th and that decline has continued with her now being only about the 4th. She is 15 months old and weighs 17lb 2oz. She caught her first cold when she was 3 weeks old but has an older brother who had just started nursery at the time, so we expected her to pick up various germs. At 9 weeks old, she was hospitalised with bronchiolitis (negative RSV test) following a 2 day stay in hospital with me and her brother after he contracted severe croup, so I put it down to her picking up some nasty germs in the hospital (she was being breastfed so had to stay with us). 10 days after the bronichiolitis, she developed a chest infection and had her first course of antibiotics. At 6 months old, she once again contracted bronichiolitis and we ended up in hospital for 4 days with severe breathing difficulties. She had two bugs growing on her culture, was positive for RSV this time and was put on antibiotics, steroids and hourly nebulizer before switching to salbutamol inhaler. Ever since then, she has had an infection every 4 weeks. She was referred to hospital for her poor weight gain and although the Paediatrician wasn't concerned about her size (her brother started off life on the 50% percentile and steadily dropped to around the 9th), she did request to see her again in 3 months to monitor her chest and consider putting her on a becotide inhaler to try to prevent the frequency of these infections. After a bad infection last month, she was put on becotide a month before her appointment back at the hospital (which is tomorrow). Last week, she developed another horrendous infection requiring antibiotics and steroids as well as her inhaler. She finished her antibiotics yesterday and today, is crackly and wheezy again. We have been to the out of hours doctors and they haven't prescribed anything yet as they want the hospital to hear how she sounds when she is in the midst of an infection. From your experience with CF, am I right to be concerned or is this just asthma? I am going to request a sweat test tomorrow as I cannot get the thought out of my mind. This many infections is not normal in my eyes. Whilst I had childhood asthma, I did not suffer in this way. I know RSV can leave the lungs susceptible for up to 2 year afterwards (according to the Paediatrician at our first appointment) but this every month without fail is just ridiculous and I hate seeing my little girl so unwell all the time. I would be very grateful of any thoughts or advice you might have. Thanks</SPAN>
fallenarches
New member
I would ask to have her tested for CF but also ask to have her tested for immune deficiency. I would make sure they do the IgG subclass test for the immune testing, not just the IgG testing. What this test is for is to see if she has enough immunoglobulins to fight off infections. It is just a blood draw to run the tests. Our daughter was suspected of having CF but all tests came back negative. A woman I know suggested we have her tested for hypogammaglobulin anemia, which is one of the immune deficiency diseases. There is a similar forum for immune disorders http://idffriends.org/forum so you can look up information there too. Our DD is no where near as severe as your DD with the lung infections but she has had a history of bronchitis, pneumonia, many, many ear infections, strep throat, and most recently had sinus surgery to clear out her 90-100% blocked sinuses. It's been a long road. I hope you can get answers soon.
fallenarches
New member
I would ask to have her tested for CF but also ask to have her tested for immune deficiency. I would make sure they do the IgG subclass test for the immune testing, not just the IgG testing. What this test is for is to see if she has enough immunoglobulins to fight off infections. It is just a blood draw to run the tests. Our daughter was suspected of having CF but all tests came back negative. A woman I know suggested we have her tested for hypogammaglobulin anemia, which is one of the immune deficiency diseases. There is a similar forum for immune disorders http://idffriends.org/forum so you can look up information there too. Our DD is no where near as severe as your DD with the lung infections but she has had a history of bronchitis, pneumonia, many, many ear infections, strep throat, and most recently had sinus surgery to clear out her 90-100% blocked sinuses. It's been a long road. I hope you can get answers soon.
D
drdanika
Guest
According to the director at my daughter's clinic, there have been 5 or 6 false negatives in newborn screening nation wide since they started screening. Most are less common mutations, and thus less classic presentation. My daughter had an initial screening that was positive, followed by a second that was negative. Turns out 4 years later, after treating her for asthma, she does have pretty classic CF, with 2 fairly common mutations.
Her story with the chronic infections is simular to yours, but didn't really kick in until she was 3 adn half or so... she's aonly child, so it was really when she started pre-school that we started realizing there was something wrong.
What ever it may be, continue to advocate for your daughter, and hopefully they will get her case figured out soon.
best of luck
c
Her story with the chronic infections is simular to yours, but didn't really kick in until she was 3 adn half or so... she's aonly child, so it was really when she started pre-school that we started realizing there was something wrong.
What ever it may be, continue to advocate for your daughter, and hopefully they will get her case figured out soon.
best of luck
c
D
drdanika
Guest
According to the director at my daughter's clinic, there have been 5 or 6 false negatives in newborn screening nation wide since they started screening. Most are less common mutations, and thus less classic presentation. My daughter had an initial screening that was positive, followed by a second that was negative. Turns out 4 years later, after treating her for asthma, she does have pretty classic CF, with 2 fairly common mutations.
Her story with the chronic infections is simular to yours, but didn't really kick in until she was 3 adn half or so... she's aonly child, so it was really when she started pre-school that we started realizing there was something wrong.
What ever it may be, continue to advocate for your daughter, and hopefully they will get her case figured out soon.
best of luck
c
Her story with the chronic infections is simular to yours, but didn't really kick in until she was 3 adn half or so... she's aonly child, so it was really when she started pre-school that we started realizing there was something wrong.
What ever it may be, continue to advocate for your daughter, and hopefully they will get her case figured out soon.
best of luck
c
M
Mommafirst
Guest
Hi, I think you have legitimate reason to push for CF testing. While it is possible that its not CF, there are enough symptoms present to keep pushing. Mom instinct is amazing and clearly you know that you need to push forward. Best of luck and let us know how the testing turns up.
M
Mommafirst
Guest
Hi, I think you have legitimate reason to push for CF testing. While it is possible that its not CF, there are enough symptoms present to keep pushing. Mom instinct is amazing and clearly you know that you need to push forward. Best of luck and let us know how the testing turns up.
Thanks for your replies. My daughter had the sweat test carried out today, which came back with a level of 33. This, coupled with the negative newborn screening, makes CF very unlikely. She has also had bloods taken to have her immune function tested - we have got to wait for those results.
Thanks for your replies. My daughter had the sweat test carried out today, which came back with a level of 33. This, coupled with the negative newborn screening, makes CF very unlikely. She has also had bloods taken to have her immune function tested - we have got to wait for those results.
I think that you have more than sufficent reason to change Doctors. What is more inportant is that you contact the closest APPROVED CF CENTER. Even if your childdoes not have CF but ESPECIALLY if she does, all of these lung infections are doing PERMANENT damage to her lungs. Most local Doctors don't have a clue about CF, get her to an APPROVED CLINIC ASAP. Bill
I think that you have more than sufficent reason to change Doctors. What is more inportant is that you contact the closest APPROVED CF CENTER. Even if your childdoes not have CF but ESPECIALLY if she does, all of these lung infections are doing PERMANENT damage to her lungs. Most local Doctors don't have a clue about CF, get her to an APPROVED CLINIC ASAP. Bill