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Old 05-10-2005, 08:21 PM   #1
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Question to byhope1113

you answered my thread about my mucousy daughter. I was wondering, did you find that the asthma meds actually cleared the mucous up?


My daughter(5) got a 48 on her cf test. I am going to try to get them to genetic test. It is quite hard in British columbia because our doctors are paid through the government and so you don't always have a say as to what they will or will not do.i.e. we do not pay directly to the doctor.

What do they tell you the prognosis is on this morphism and what is the treatment?

 
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Old 05-12-2005, 07:56 AM   #2
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Re: to byhope1113

Sorry it took me so long to get back to you. Really I think think the asthma meds just help her breath better and stops her coughing. All the sinus infections and ear infections definately trigger her asthma though. If I remember correctly the Atrovent (which is one of the asthma meds) does help to dry up fluid. At times the doctors have put her on an Atrovent nose spray too to help dry up the mucous but you only supposed to do that for about two weeks at a time. It helps then but it always comes back when we stop using it. They have her on Rhinocort to help with the mucous. She is also on Zyrtec, Singular and Sudofed three times a day. The doctors REALLY STRESS sinus washing. Personally I hate it. My daughter obviously throws a FIT everytime I try it. The doctors say keep doing it anyway.

At this point I really don't think there is more they can do for the M470V than what we are doing now. But they really have just begun to do studies on this polymorphism. I actually just lost our CF/Pulmonary specialist because she just moved to Nebraska. The lady was GREAT. When she left she had me sign authorizations for two doctors one who specializes in genetics, Dr. Garry Cutting at John Hopkins and the other was an ENT in Nebraska who is beginning to study this M470V polymorphism. I'm in Texas by the way.

By the way what is the normal range for the sweat test? Is the 48 even close to the CF level? If it is then I'd definately push for the genetic test. By the way on our form for genetic testing the doctor marked that she wanted the test for CF and also the test for any polymorphisms. Another words it's two different things they test from the same sample, but if you don't ask for the polymorphism test they might not do it.

I know I felt better after I learned about the M470V even though I couldn't do a whole lot more than I'm doing now. At least it explained a few things. I now understand that there is a reason why she has so many problems with her ears, nose and sinuses. I have found that most doctors don't have a clue what M470V polymorphism is though, I think I just got lucky that our CF/Pulmonary Specialist had a degree in genetics at was interested in the M470V long before we came along. She just knew enough about it to recognize the symptoms. Her name is Dr. Bettina Hilman.

Hope this helps

Last edited by BYHOPE1113; 05-18-2005 at 10:52 AM.

 
Old 05-12-2005, 09:48 AM   #3
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Re: to byhope1113

If the sweat test is below 30 you definitelydon't have cf. If it is above 60 you do. and so she is borderline. She had many ear infections during her first two years and tubes, but so far so good. she is mucousy only in her chest (mid lobe on right).

Her brother (who I am sure has whatever she has) also has an extensive history with tubes, sinus, chronic croup, rsv, pneumonia, reflux.(he's six).

She has been on pulmicort neb for 7 days now and no improvement.

ps Her brother has been on Nasonex for at least 7 days, What is the max that he should be on this for at a time do you think?

 
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