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Criteria for Atypical Cystic Fibrosis Diagnosis

 
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Beccamom



Joined: 16 Jun 2011
Posts: 8

PostPosted: Thu Jun 16, 2011 3:10 am    Post subject: Criteria for Atypical Cystic Fibrosis Diagnosis Reply with quote

My 11 year old has been tested for so many things to explain her chronic cough that lasted from Sep to May stopped for 2 weeks and then returned this past week. She has failure to thrive. She was previously diagnosed with asthma for 10 of her 11 years, but after she spent another Christmas in the ER we went for a second opinion for pulmonology. This doctor was convinced my DD had Atypical Cystic Fibrosis from her symptoms and genetics G542X mutation 7T/9T variants and two polymorphisms. This doctor wanted to refer to a Cf specialist, but we decided to switch back to the orginal hospital since it ranked much higher on the CF foundation website. After the first Nasal Potential Difference test my daughter was diagnosed with Cystic Fibrosis. Two days later she ended up admitted to the hospital and began IV antibiotics and manuel Chest Physical Therapy. Then the next attending pulmonologit took over and took her off the IV antibiotics because she had the flu. She had cultured that her lungs were colonized with staph a the week before which was why her assigned pulmonologist began the IV antibiotics. We continued chest PT after the leaving the hospital and her cough became less and less productive and less frequent. She had 2 weeks with no cough other than during chest PT. Then she has a seocnd NPD test because the doctor felt the first may have been inaccurate since she was so sick so soon after the test. The second NPD had her at an 11% on a number where 10% or less is consistent with CF. Now her CF diagnosis was overturned. The pulmonologist told me that the fact that my daughter felt chest PT worked was in her head. She began it in the hospital when she started to feel better. So when she did not ask for Chest PT one morning I did not suggest it and she swam for 10 minutes then sat on the side of our pool watching her friends swim while she coughed. She requested Chest PT consistently for hte next week until Sautrday approached again. I again did not mention it. She skipped the whole weekend and by SUnday night her cough was so bad when she showered that strangers at my in-laws house who were outside could here her cough from a shower upstairs and asked if she was OK. So I took her back to her pediatrician and he confirmed she has a mucus cough and suggested restarting the chest PT and taking Mucinix. I skipped the Musinex and restarted chest PT and her cough is much better although not gone. Primary Ciliary Dyskinesia has been suggested, but she has few sinus infections just all respiratory infections so the pulmonologist thinks it is unlikely. She will have bronchoscopy late summer when it can be arranged with an endcscopy. I would do anything for my daughter and recently had to quit my job because I ran out of vacation days to use to take her to her doctor appointments and stay home when she is sick. I just want the right diagnosis so a treatment plan can start. Any advice would be appreciated. I see you have 3 of 4 kids diagnosed with Atypical CF.
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Mom to 11 year old DD with chronic bonchitis other diagnosis unclear
Mom to 9 year old a lot less complicated
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momof4



Joined: 29 Mar 2011
Posts: 24

PostPosted: Sat Jun 18, 2011 8:02 pm    Post subject: Atypical CF Reply with quote

Purchase IMO she has it!!!! I am so sorry you are going through this HELL. I have read every journal I can to educate myself and it sounds like she is the perfect fit for Atypical CF. I only say Atypical because of the genetics certainly not because of the symptoms! I am working with the CFF to raise awareness of Atypical CF for moms like you. The problem is that many many doctors are not educated about it yet so tons of people go undiagnosed and suffer. I plan on changing that! Keep your chin up and don't stop fighting.

If you are unable to get a Vest machine use a flutter or acapella to do chest pt.(go to amazon through connections4life they sell them there) Both of them work really really well. Also encourage as much running, swimming and trampoline jumping because that will clear things out. Don't give up and try not to get discouraged. I found a fantastic Dr. who specializes in Atypical CF and any info she gives me I will share here.. Hang in there!!
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Single mom to 4 kids, 3 with a chronic illness. Survivor of death of a sister and of bestfriend.
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Mak-enna9



Joined: 24 Oct 2016
Posts: 1

PostPosted: Wed Oct 26, 2016 4:41 am    Post subject: Reply with quote

No doubt, kids are more prone to cold and cough than adults and itís better to take proper ENT care advise for them. Last month, my son suffered with fever and cold. Took medication from family doctor and got over with it quickly.
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