Me again with more questions

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babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 12/25/2007 11:52 AM (GMT -7)   
My son is 5 now and was tested in the hospital for CF when he was born because his father and I both carry a different CF gene.  The geneticist pretty much said that David should be in the clear but there is different variants that the test does not pick up...
 
Anyway I am concerned and have been because he has a continuous cough now and they have decided it may be asthma and the pediatrician pretty much ignores my concerns about that CF issue... if he was tested when he was born will this rule it out completely or can he develop it later in life.  He is ALWAYS sick, underweight but still tall, either has a cough/cold/congestion or stomach issues... Had to go into the hospital for the stomach issues because he got so dehydrated this was a couple years ago...
 
I guess I am just worried but I wonder how much these CF genes play a role in not only his asthma but mine aswell... Is there more in depth genetic testing that includes all variants?  Would it be worth having him blood tested or should that initial sweat test be enough? 
 
Medications for the cough... singulair... isn't controlling the issue and they want to start him on inhalers.  Why won't they at least answer my question or acknowledge I even asked it?  Am I just crazy and looking into this too deeply?
 
btw:  I asked hospital while I was there what his results were and no one seemed to know what I was talking about so my pediatrician called hospital and they even said they couldn't find results but it was probably negative... I think this is where my real worries lie is was the test even done if no one can show proof that it ever was?
 
Just concerned.
 
 
dx: Rheumatoid Arthritis.  Duration: 10yrs. Dx'ed 2006.  Asthma, hypertension, hypothyroid
 
Meds: Methotrexate 25mg wkly, Arava 20mg, Rituxan infusion, Folic Acid, Fish Oils, Advil, Advair 250/50, Diovan HCT 160mg/25mg QD, Women's One a Day, tylenol PRN.
 
 


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 12/26/2007 4:18 AM (GMT -7)   
Hi there,
I would be concerned too, probably negative isn't a good enough answer.
CF is a very serious illness, and they should not be playing with your sons life with probably's or maybe's. You need a definate answer.
There is no way you can develop CF, it is always there, in your gene's.
The test when he was born may have just been a guthrie heel prick test, which are now given too all new-born babies now (in the UK anyway, not sure about elsewere.) I remember reading somewhere, they are about 95% accurate, but can give false results.
Nothing more can be done I don't believe, other than just outright demanding that your son is tested, and if your paediatrician won't do it, then you're going too have too find one that will. A sweat test usually gives accurate results.
Also a genetic test will be much more accurate now than 5 year's ago, as they can test for a lots more mutations now.

Obviously there are a lot of symptoms too CF, and your son might not have it, as it could just be a few other illnesses put together. But, it's defintely better too be on the safe side. Unfortunately demanding you are taken seriously is the only way. It's horrible that it has too be like that though.

Keep us updated with how things are going, and in the mean time, I will try and find out if there is anything extra you can do too get your son tested.
Gem
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