susancollins Posted December 17, 2012 Share Posted December 17, 2012 He had three vials of blood drawn today at the doctors office. We will know about the blood work results on Wednesday. I called the birth center this morning and they said that he did have a PKU and it all came by negative. So he can't have cystic fibrosis which is a major major Praise to GOD!! The doctor was really nice and had a great bedside manor at the peds office He had several coughing fits and she could see the mucous that was coming up. She said she thought it could be sarcodosis which my mom has and it is genetic and an immune deficience. She also said that it could be allergies she order a immungloben (sp?) and allergy test via bloodwork. . She did orders for an x-ray and Grayson was referred to Wake Radiology for his x-ray. He had such a hardtime getting his x-ray it looks like some medivial contrapation. I had to hold his hands upright and all he did was cry calling mama. She had to do the x-rays twice because he started turning around. I am going to lay down for a nap with him. I will update when I know more. Here is a photo of as we are going home from the doctor. Quote Link to comment Share on other sites More sharing options...
newlifemom Posted December 17, 2012 Share Posted December 17, 2012 Glad you were able to have your concerns heard. Praying for quick and simple [relatively at least] answers. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted December 17, 2012 Share Posted December 17, 2012 I am so glad that you were able to have him seen and that they took you seriously. Praying for a "good" diagnosis on Wed.- something that will help Grayson have a much better time than he's been having. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted December 18, 2012 Share Posted December 18, 2012 I am so glad that you were able to have him seen and that they took you seriously. Praying for a "good" diagnosis on Wed.- something that will help Grayson have a much better time than he's been having. :iagree: :grouphug: Quote Link to comment Share on other sites More sharing options...
Guest submarines Posted December 18, 2012 Share Posted December 18, 2012 Thanks for the update. It seems that your doctor is finally taking you seriously. PKU tests for phenylketonuria, not cystic fibrosis, though. These are different conditions, as far as I understand. Quote Link to comment Share on other sites More sharing options...
JenC3 Posted December 18, 2012 Share Posted December 18, 2012 No, PKU tests for a variety of things. It does vary from state to state, but I think Susan is NC which tests for CF. Now sometimes the tests are faulty:( Quote Link to comment Share on other sites More sharing options...
mumto2 Posted December 18, 2012 Share Posted December 18, 2012 :grouphug: Glad the Doctor listened to your concerns. Quote Link to comment Share on other sites More sharing options...
besroma Posted December 18, 2012 Share Posted December 18, 2012 I hope you get some answers soon! Quote Link to comment Share on other sites More sharing options...
swellmomma Posted December 18, 2012 Share Posted December 18, 2012 I am glad the dr said he did not have CF. I didn't know the PKU test could screen that, I thought it was only the sweat test that could for sure. I am praying you get some answers on wed when the results come in. Those xray contraptions for babies look so uncomfortable. Will you get the results from the xrays on wed too? Quote Link to comment Share on other sites More sharing options...
Guest submarines Posted December 18, 2012 Share Posted December 18, 2012 No, PKU tests for a variety of things. It does vary from state to state, but I think Susan is NC which tests for CF. Now sometimes the tests are faulty:( "PKU" is an abbreviation for PhenylKetonUria, which a specific condition, different from CF. You probably mean that the general newborn screening in her state includes screening for a variety of conditions, including PKU and CF. Quote Link to comment Share on other sites More sharing options...
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