New here.. anyone else have a cf child?
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April 9th, 2009, 09:35 AM
Join Date: Aug 2005
HI! Congrats on your pregnancy!
We're about to start all the testing for CF with Milo. He has other issues that could account for most of his problems that seem to be CF-related, but he has had the same cough/cold since November. In January, he tested positive for RSV and had bronchiolitis, but he hasn't gotten better. He has been in and out of the hospital and in Special Care for it. I guess that Russell-Silver Syndrome (which Milo has) and CF are on the same long arm of chromosome 7. We just got all of this info yesterday. I've thought about it several times, and I've been surprised that the docs haven't mentioned it. The pulmonologist gave Milo more antibiotics, more steroids, and changed his rescue nebulizer, but nothing is improving. RSS kids have notoriously low muscle tone and have a terrible time coughing productively, so we're just hoping that this is the problem!
BTW, RSS comes with most of the same issues that CF does, so there's huge overlap there! FTT, pale, poor immune system, poor feeding, digestive issues, etc.
I hope that you find lots of support here!
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