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Cystic Fibrosis Message Board


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Ditto on the genetic testing. DS had his at a CFF accredditted facility and it was a normal 32; however, a local doctor suspected CF and had ordered genetic testing and it showed CF.

Based on symptoms, sounds a LOT like CF, which can present itself in very different ways -- failure to thrive, sinus issues, loose stools... I've been corresponding with another parent, whose son was being treated for an immune disorder -- they FINALLY got amplified genetic testing done and it showed he had CF, a rare mutation.
Thank you both so much for your responses. Ratatosk, was the other parent's child diagnosised with the auto-immune disorder? My son has elevated white blood cells in his intestines and chronic inflamation, but not the flat villi they look for with celiac's disease so unless he starts getting better on the diet she is not sure that CD is the answer. I guess I should just push for the test or the biopsy in september.
Thank you both again!
I'm not sure what he was diagnosed with -- he was undergoing some sort of infusions every few weeks for an immune disorder, had issues with malabsorption, sinus infections, because of steroids he's got blood sugar issues and his vitamin levels very low, including iron.

He's also cultured mrsa and pseudomonas.





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