Help! I need a diagnosis-

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bluewriter

Guest
Okay, Arkansas Childrens now says they will do another sweat test while they do the CT scan but I need to be aware that it might not work under sedation while she is NPO because of decreased secretions. And they will add an ACE level to the blood testing. And they will send her genetic mutation analysis to Embry for gene sequencing. And they have given a referral to Immunology at the Childrens hospital as well. They believe she needs a repeat CT because they don't understand why her chest xrays are getting worse but nothing is showing up on the CT scan and they think maybe contrast will help. I'm getting what we need with the sweat test, gene sequencing, immunology referral, and ACE test so I feel stuck about the CT. They said they believe the risk is worth the benefit. I also asked twice about the sputum but they said they want the CT first. Her PCP says if we do everything they want and still hit a brick wall or if they completely stop working with us again that she'll refer us out of state. I recorded all conversations just in case. When we get down there, which I guess we have to do now, on the 21st, (I hope they aren't lying about anything this time), then we'll talk again about correcting for incorrect record until that is fixed. Thanks again to everyone.
 
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bluewriter

Guest
I am happy about the gene sequencing and repeat sweat test :)
And I am happy that the nurse said that the doctor doesn't just think but KNOWS something is going on with her and will hard to figure it out
I'm glad because last year they said she had habit cough which was insultingly wrong so I'm glad they are at least finally taking her seriously
I still don't love the care there and wish we were somewhere else and have trust issues with them, but a start is a start and something is something and we should get an answer to the CF question this way I pray
 
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2roses

New member
Good news, bluewriter. You are making progress. Don't want to pile on as you have so much on your plate, but pleeeeeeeeeeeease get your daughter (and you) to counseling. Regardless of the dx, you are dealing with chronic disease and need professional support, including addressing the assault your daughter experienced. It will help all of your coping skils given the enormous stress you are under ... your whole family.

Good luck to you. Keep us posted.
 
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bluewriter

Guest
2roses, thank you for your support. My daughter has been in counseling since the assault and I am in counseling also. Thanks again for your continued support. Our next appt is the 21st for the CT scan, repeat sweat test, ACE test and a couple more genetic tests. We have an appt in Feb. for an immunologist.
 
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bluewriter

Guest
Here is the update and then I guess we won't be using this site anymore. Thank you to all of you who have been helpful and non-judgemental. My daughter's gene sequencing came back negative for CF and her second sweat test was 33 (also negative as you know). So CF has now been completely ruled out. They said her CT with contrast was negative for anything new as well. So we still don't know what is causing her symptoms as she still has cough, clubbing, and abnormal xrays but at least one major thing has been ruled out. We still have yet to see a gastroenterologist and an immunologist, so maybe something down the road if she can tolerate. I wish she didn't have to go through anymore. She has a lot of green mucus (a lot) with a little blood that comes out when she goes #2. Don't know if this is related. Anyway, thank you again. As she doesn't have CF, I'll leave you all to support those who do. Bless you.
 
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